Six Months or Less

Stress and Decisions

2010-04-26T23:16:00.000-05:00

I'm two months over due for my 6 month check up. At first it was a miscalculation. My life has become... complicated. Now that I know that I am over due, I still have not made an appointment.

I have good reason. I don't like my doctor. The alternative in this small town is even worse, that guy is... well, not suited to my personality. With my doctor, he does all the tests, then sends me 2 hours away to the Mayo Clinic to have them redo all the tests he just did. It is traumatic, time consuming, and exhausting.

I'm also a little scared. My life is exceedingly stressful. Just two minutes ago, I accidentally posted a private message on this blog that was a good indicator of where my stress is coming from. Luckily I deleted it in time, because it isn's something I can really share with the world.

Today I noticed a patch of skin that peeled off at my scalp. It is pink and burns. I've had irregular periods for the last two months. This is a sure sign of stress... but considering my health history, it could be sign of something more. I am fairly certain that it is all stress related... but what if it isn't. It is a viscous cycle that I know going to the doctor will sort out.

I just can't do it. I deal with with the added stress of waiting for test results, procedures, and the god awful conversation that I'm sure I'll have to have with my doctor. I wish I could tell him to be silent and just not say a word. It would make things easier.

Most of the time I'm pretty positive, but this week has been a struggle... being Monday, i hope that it isn't a harbinger of more trials to come.

I keep telling myself, maybe next week.

I really need to receive some massage.

Imagine my surprise...

2010-03-10T16:52:00.000-06:00

A lot has happened in the last couple of years. I am thankfully cancer free as of this moment and fully enjoying my massage career.

I decided to take some steps to find out whether the steps I was taking to further my business were working. I decided to use google analytics to see where traffic was coming from for my website. Imagine my surprise when I found quite a bit of traffic coming from this blog!

I have neglected this blog horribly. I gave myself plenty of reasons. I have other blogs, I have more clients, I don't work in hospice, I don't have cancer anymore.

What I do still have is a fear of death.

I know that the increase in stress in my life has amped my reaction to little things. Thinking about my parents, or the wrinkles around my eyes, or the fact that I don't have children only feeds the fire.

My experiences with hospice have given me the language to understand and explain the process. Close friends find it easy to talk to me about their dying family members, and my family shares openly their feelings about what they want after they are gone.

Yet, there is this terror inside that is at its core, primal. We live in an age of reason, and we can use all the logic we have to explain it away, but it can not take away this instinct.

Through my journey of late I've come to terms with some aspects of my personal faith, but that doesn't quell the uneasy feelings I have either. It provides no answer to the unanswerable, and I don't think that it supposed to.

On the days that I have a good handle on this, I revel in the mysterious nature of our world. I feel that some questions are not meant to be answered. In fact, I think that the answer is really within us, but we are not able to translate it into our limited language of culture and society. It just is, and we should accept that.

On the other days I busy myself with the daily tasks of being, healing, and moving forward.

Moving forward with my career as a massage therapist has been more than I could have ever hoped for. I hope that if you have found this blog you will not be dismayed by my current lack of posts. I have a feeling I will be back when the moment is right. The archives are full of stories dealing with death, massage, and care-giving, please read them and share your thoughts on them. If you are a massage therapist looking for information or advice, I am more than willing to share information. My business site is listed to the side, and I have a massage therapy blog as well.

Yuck

2009-04-13T17:26:00.004-05:00

I don't know how many ways I can describe the awfulness of an endo-cervical cutterage without scaring readers away. It hurts. They don't give you pain killers until after. And it makes me cry from the pit of my soul.

I was under the impression that I would have a brief exam by the Gyno and then consult with the surgeon afterward. Luckily for me my doc here at home did not send the slides from my last exam, I got to have everything redone by the docs at the Mayo in Rochester. Pap, Colposcopy, and ECC... all while be observed by the hottest doctor I have ever seen.

This Gyno was good. She obviously wasn't going to be taking any risks, or wasting my time with multiple appointments. I have much more confidence in her, than my home doc. Her Eastern European accent was easy enough to understand for the most part, and I really think that she has a good head on her shoulders. It just seemed with me, she was a little distracted.

By the time she had arrived in the exam room, I had been waiting for at least a half hour with no pants on. I had to sneak out at one point with a sheet wrapped around me looking for a bathroom, and when I got back, there was still no sign of her. When she did arrive she was with a tall man in a suit and a name tag. She introduced herself and then him as Dr. Whatisname and then continued with the exam. I looked at his name tag and it said he was a maxiofacial doctor, which I understand to be an oral surgeon.

I understand that Mayo is a teaching hospital, but I didn't understand why the guy that does root canals was observing my baby canal. I also couldn't help but notice he was one of the most attractive men I've ever seen in person. Did it help with the exam, not really. Considering the Gyno was talking to him the whole time, and having him 'take a look for himself' the torturous exam took twice as long as normal. He was respectful and all that, and was lucky I guess to observe an 'unsatifactory coloposcopy', but give a girl a break here.

So, as for cancer again, I don't know, but it's not looking too great. Waiting back for word from their results. There was a missed call on my phone today from a number from Rochester, but no message. Hard to say what that means.

Here's hopin.

Next Step

2009-03-24T12:46:00.005-05:00

I have my next appointment set up for April 6th. I am both nervous and non committal. There is only the appointments to see an OB/GYN for more poking and prodding and then the consulting with the surgeon.

I've come to understand that I'm supposed to feel used to this by now. In many ways I do. This is just another step in the process. I have done this step several times. I'm mostly expecting to not find out any information at all. Just more 'we don't know'.

I try not to get mad at the medical community. The impression that doctors know more than they do is the fault of the patient as much as the rules of society. I'm consulting them for their opinion. In the end it is always my choice towards the action.

I discussed with my parents that if they have nothing definitive to give me, I'm not going to undergo any surgery. That decision has given me some peace.

Waiting

2009-03-04T16:38:00.002-06:00

Waiting seems to be a theme in my life right now. Maybe I should embrace this as my opportunity for enlightenment on the subject. Tracked the doctor down after his vacation and he's passing the towel over to the 'expert' at the Mayo Clinic. I have to wait to get into to see her, though. So I'm not sure when it will be that I'll get more information.

I'm going to concentrate on being in perfect health.

Vacation

2009-02-20T14:54:00.002-06:00

The problem with doctoring in the winter in the north is that it is so freaking cold that everyone leaves in February. It is nearly impossible to get anything done quickly in February if it involves someone going on vacation.

One month later, I have finally the results from the last procedure (after my doc returned from vacation)... and they are indicative of more waiting. Good news: No sign of cancer. Annoying News: Have to travel to see specialist to determine next step since everything is not hunky dory. Even more annoying news: Have to wait for local doc to contact specialist doc and wait for the Mayo Clinic to contact me about an appointment. So, you know. That will be weeks from now.

Good thing I'm not dying. ;)

Naming this Blog

2009-02-11T10:14:00.002-06:00

I'm having trouble with this blog as of late. I started it talking about working with Hospice because it was such a profound experience. Now it seems to be a place to talk about my horrible doctor visits and being treated for Cancer that I may or may not have.

I decided several months ago that I couldn't hold it in anymore, because it was eating me alive. I had only told a few friends, and hadn't even told my best friends that it had possibly come back. My parents, sisters, and boyfriend were the only ones that knew anything about it. So I spilled my guts, and I feel better.

I don't want to talk about it so much any more. I mean, I will definitely keep people updated, but I certainly don't want to feed the ghouls so to speak. So what do I talk about then? The people that I massage? Professionalism and HIPPA prevent me from doing that. Things that are unimportant, like the hundreds of fake band names I come up with? People seem to like my writing, from what I gather (which is sometimes difficult to do).

So, I'm just going to say what I want. Right? Yes. Right. I'm in charge here. ;)

Speaking of Updates:
I have not heard word one from Doc. It's been nearly 3 weeks. What does this mean?
According to my sister, who is a newspaper reporter, my Doc is at a conference this week. I don't know how she knows this, but small towns can be creepy sometimes.

Maybe I'll Rename this blog The Rub Down.

I'm tired of worrying

2009-02-02T16:06:00.003-06:00

I am still waiting for the updated prognosis. However, I am tired of worrying about it. So I decided I'm not going to. I could waste my time, pre-worrying about something that I don't know the outcome of and make myself miserable, or I can enjoy each day I have. I think I'm going to vote for enjoyment.

Recluse

2009-01-27T18:06:00.002-06:00

I haven't been good myself. I have shut myself away from the world and anything that makes me have to answer questions or have conversations.

I am not dying, but I do not want to explain. My friends and family know better, however. They know that I am struggling with two many worries in my basket. They want to know why I haven't read their blogs, or updated them on my health. What exactly do those cryptic status statements on facebook mean, anyway?

Whether you have an abnormal pap smear, or cervical cancer, or just a regular check up... Pelvic exams are not fun. Up until this last year, they rated higher than rectal exams and enemas on my list of fun things to do, but that has quickly diminished. Since June, I have had 8 pelvic invasions of the medical variety. They have varied in complexity and pain, from the merely uncomfortable to the horrendously awful. Last week I experienced the most horrible of all procedures I have had to endure. It defied any strength of character that I possessed and sent me into hiding ever since.

Since my last pap came back with severe dysplasia (that's one step before cancer, as I understand it) after I had surgery to remove all hooglie googlie cells, the docs were not happy. They did another LEEP procedure, a difficult and uncomfortable procedure involving an electrified scalpel and local anesthesia. A procedure which I was doing okay with until they removed tissue from an area that had not been numbed. The results from that biopsy was... good. It was normal, with no abnormal cells and no cancer! Whoo hoo! *shaking head no* Not so says the doc, because the other test showed abnormal, so they have to be coming from somewhere. Somewhere deeper. Where we can't see. Enter in the Endocervical Extraction. I was warned that it would be uncomfortable but comforted by the fact that it would be quick. It only takes a second to feel the pain as the doctor blindly inserts, prods, and pulls out pieces of you, with out the benefit of painkillers.

I started crying. It took all I had not to throw up. When the nurse and doctor left the room, I just sat and stared at my feet. What am I doing? What I have I done? Why do I have to go through this?

Earlier in the summer, I breezed through these procedures with hardly a thought. I was still numb I guess. In shock over it all. I felt guilty that I had not suffered. Now each visit is excruciating, filled with nothing concrete and soul wrenching pain. Now I wait. Wait for news that i don't know what do with, how to feel about, or wish for. I wish for no cancer, but that will not preclude me from further surgery if there are abnormal cells.

This is what has been keeping me up nights, and avoiding my phone during the days. Today is a good day and I grow weary of hiding myself. Perhaps it is the warmer temperatures, finally above 10 degrees, and the sunshine. Maybe it is love and concern of my friends. Maybe I'm just weary of myself.

More waiting...

2009-01-16T10:21:00.002-06:00

I have mentioned a couple times in this blog that my mother has always advised against getting too attached to your plans. I am reminded of this advice on a constant basis lately.

In September, I underwent surgery to remove pieces of myself. Pieces of my physical body and my spiritual self. I tried to explain to my sister what it was like. The 'procedures' leading up to the surgery were worse than the surgery itself. I was awake for the procedures as they prodded around inside my cervix. My sister has two children, so I hoped that she would understand the profound connection that woman have to their reproductive abilities. My entire biological imperative; my purpose as a woman was being violated. I could feel pieces of my identity being pulled away from me bit by bit. I felt it in my very core, as if I was removing part of my soul.

I know intellectually that it had to be done. My life and my future chance at fulfilling my purpose depended on it. After the surgery, and the confidence of the surgeon left me feeling relieved. I had done the right thing for myself, my future, and I only need to take care of my health. Report for 3 month check ups for 2 years and avoid alcohol, cigarettes, and stress.

I had my first 3 month check up in December. My doctor called after the beginning of the year. I had resolved to let 2008 cast a pallor on my future. It had been a tough year, but I'm made of sterner stuff than that. Plus I had a new year in town, and it showed the shiny new gleam of promise. That gleam was tarnished after talking to my doctor about the pap results. Not only was there more dysplasia, it was severe... after less than 3 months. The doctor, surgeon, and I are still stunned.

I remind myself that this is what 3 month check ups are for. That this isn't as yet, a life or death situation. I am still crushed. I thought I it was over. I didn't know if my soul could handle another LEEP procedure. The electrified scalpel, the numbing injections, the florescent lights in my eyes, and that god awful green paint on the walls. Once again, it was awful, but I survived it. Now I just wait. Wait to see if more cancer was found within. Wait to see if my purpose is put further at risk. Wait to see the ultimate boundaries of my strength.

Taking it all in

2008-12-30T17:25:00.004-06:00

It has been since months since I was diagnosed with cancer. I have since been tested and prodded and surgically treated. I have had one follow up visit (still awaiting results)... but it is only now that I feel like I can talk, or even think about what happened. I don't have cancer anymore, I'm not sure I even did in the first place. It happened so fast and was so unexpected that it never registered that I had a life threatening illness.

I feel strange with my brush with cancer, it doesn't seem like it happened at all. It raises all sorts of questions of the 'why' variety. If there is a God, why scare the bejubus out of me, then make it seem like it never happened? I remember a lot of fear and denial and guilt. Isn't that interesting. Guilt over not have as bad of cancer as everybody else. "Please don't call me a survivor... I just had a wart removed, that's all." That's how it felt to me.

It started me thinking about hospice patients that are given a diagnosis of 6 months or less when they didn't know they were sick in the first place. When I worked with them, they seemed calm or sometimes in daze, not exactly sure of what to make of the situation. Shock I guess you would call it. Now I have experienced it first hand... if my diagnosis had been worse, and it took me 6 months to realize what was happening to me in the first place... where would I be?

Diagnosis

2008-12-22T14:45:00.007-06:00

It has been over a year since I've left hospice, but the affect on my life has not diminished.
*****

This summer I was diagnosed with cancer. I sat in silence and looked to my mother as the doctor said words that I knew I understood but did not make any sense. I could feel the oxygen burn in my nostrils as I inhaled. I felt the mental clicks of defense mechanisms. Stoic demeanor will surpass emotion. I stopped listening and nodded my head to make my exit that much sooner. There would be appointments. There would be MRI's, consultations, and discussions of risks and outcomes in the future, but at that moment I wanted to dissolve into oblivion.

*****

The experience of working with bodies both strong and frail have opened my eyes to miracle of life. As a species we are a grand experiment that seems on the verge of failing, yet pulls through at the very end. Our very fear of death has lead to a richness of life that can not compare to any other species, yet our lives are not complete without death. Is our fear the death itself, or the lack of knowing whether we'll be able to gloat to our friend that we did it! We got to the finish line with all goals accomplished.

I fear the darkness. I fear the silence. I fear the cold of the earth and loss of inner burning of my soul.

Another Cycle

2008-02-05T21:05:00.000-06:00

I found out recently that two of my hospice clients that were released from hospice, had returned and subsequently passed away. I talked about these two quite often, and if not in my blog, in my mind and heart.

I saw E. for almost two years, before they decided to release her from hospice. She is the one that scared me the most. It seems funny to be scared of a 90 year old woman confined to her bed, and her own head. She didn't talk, she couldn't move herself, and she barely acknowledged your existence, but when she did, it got right to my core, right to my fears.

The fear that I would be alone dying, with no family to take care of me. I don't know if that was E.'s case, but situation always seemed to allude to that. In scary movies, you don't have to actually see the scary part to be scared. You infer things, you guess, and you imagine. A lot of the time, your imagination is a lot worse than what actually happened, and I think this could be true of many of our fears. To be well taken care of in a good nursing home, such as the one that E. lived in, is nothing to fear... but we do none the less.

The second person, D. was returned back home when her family was again able to take care of her after a family set back, and she died at home with her son there. She was also slipping into her own mind, slowly and would have soon needed much of the care that E. needed... but D. gave me hope. She was in a nursing home for several months, but she always seemed to have a smile on her face no matter where she was. I did not fear going to help her, and I was glad to hear she died at home.

I also hear that they have finally found a replacement for me 6 months after I left. I hope she is ready for what she is about to experience, I know I wasn't. I am happy for the clients to finally have the benefit of massage therapy once again at their disposal. I know that it made a huge impact on many of the clients I worked with.

I somehow feel that it is finally coming to an end, my experience with this particular hospice. I felt a little guilty leaving, when I knew that they would have trouble finding a replacement in this small community. I don't regret leaving, my business is doing very well and my stress level is much less. However, it's hard to give up touching peoples lives in such a profound way.

Good luck to the next in this cycle.

On the other side

2008-01-04T10:19:00.001-06:00

It's been an interesting journey as of late. This switching of lanes from caregiver to bereaved.

I've understood for a long time the process of grieving and the steps it takes. The actions, emotions, and habits of the mourning process. It's been all very intellectual up until this point.

I cried for my grandma for the first time on 12/30/07, a month and a half after her death. As I let go, I realized that I was actually crying for all the people in my family that have passed in the last 2.5 years (I think we were up to 5).

Suddenly my understanding of the behavior of caregivers of hospice patients seemed so much clearer. I had not realized how much I was holding back, or how much I was relying on the problems of my clients to distract me from my own mourning.

I have heard people saying about others "She's just not been the same since so and so died" and never really knew what to think about it. I have a better understanding of it today. I realized that I have not been 'the same' since that first death in our family.

I feel that I am profoundly lucky to have had the experience of massage therapy and hospice work to guide me through this personally difficult time.

-sigh-

We Gave Her Exactly What She Wanted

2007-11-18T21:39:00.001-06:00

I had a couple of things wrong in my last post. My grandfather died on the 21st, not the 20th, and my grandma was waiting, but not for that particular date.

She asked to have the door to her sick room left open because Daddy was going to come and get her, and he did that today.

She died the Sunday before Thanksgiving, just like he did, with her children and grand children surrounding her.

We held her hand, told her that we loved her, and that we were okay. She could go when she was ready.

After she passed, my aunt hugged one of my uncles and said "We did it" and started to cry.

Sleeping in Daddy's Room

2007-11-13T10:11:00.000-06:00

Grandma insists on calling everyone's father, "Daddy". She refers to her late husband as "Daddy" and she tells me to ask my "Daddy" things. It's Daddy this and Daddy that and for the longest time it really annoyed me. I don't ever remember referring to my father as anything other than Dad (or Old Fart if I'm giving him a hard time) after the age of 4 or 5.

When she was admitted to hospice, she asked for the nurse Daddy had before he died. A week or so ago she asked my uncle to move her bed into the room where Daddy died. My grandfather died on November 20, 2004 just days before Thanksgiving in his office that was converted into a sick room. When she requested this my mother and I looked at each other knowingly, but kept our mouths shut. I had suspected for a long time that my grandmother missed my grandfather much more than she let on, and that she had a bit of a romantic in her that she would never reveal.

This last weekend my father and I made another trip to see her, and she had declined significantly since I last saw her. My first reaction was a familiar one that I knew I had to squelch. It was fear. This time instead of letting others take charge and move in, I used my education as a Massage Therapist bolstered myself with it. I walked over to her and placed my hand gently on her head. I broke through my fear with the one thing I was confident of at that moment. I was skilled in providing appropriate touch, and I knew how to work with people who are dying. I wasn't scared off when the light touch produced pain. I lightened my touch to her comfort level. I asked her if I she wanted me to stop and she said no. Though there was pain, the touch felt so good to her.

The drive home wasn't nearly as silent as the last. There was much less denial, and more anger from my father, and of course, fear. For the first time I can remember my father admitted is worst fear. "I am so afraid of November 20th" he said to me. "Do you think she's waiting for that day to die?" I asked him, though I had been thinking that for weeks now. "Yes, I think that is what she wants".

You hear stories of people dying on the same day, or two days after their spouse unable to go on. Only time will tell if this will be true for Grandma. I hope she gets what she wants. There is something romantic about it, and in a way life affirming. If she can determine this last day, make her last wish come true before going on to the next world, exhibit this last bit of power, it would make me so happy. We are a stubborn lot, my family, and I would hate for any of us to let the world decide for us.

Much closer to home

2007-10-23T10:49:00.000-05:00

I had mentioned in an earlier post that my grandmother was dying and that she was admitted to hospice. This was about a year ago, and she pulled though and was doing great, until a month ago. She is back in hospice, with an even short life expectancy than before.

I went to see her on Sunday with my father and we chatted and cleaned her house for her and visited with the other relatives that were there. I gave her a back and leg massage in her chair and she really enjoyed it. I felt good about being able to do something besides just sit there and be the granddaughter amongst the hubbub of visitors.

Kneeling down by her chair, rubbing her legs, my grandmother started talking to me as an adult, something she rarely does, even though I'm 32 years old. She normally tells me to 'go ask your daddy' things, instead of asking me what I think. This day she told me that she "wasn't faking this, as some of them think" and I let her talk. I did what I always did working with hospice patients, I let it be their time and let them have what they needed.

I left feeling drained and depressed. This is much different. Providing care for your own grandmother, and not someone elses. When I worked in Hopsice there is that magic thing called "boundries" and the knowledge that your responsibilites lasted the hour a week you were in the home. With this I took home much more information that I wanted about my aunts and uncles, about my cousins, about who is being nice, and who is being mean. I just don't want to know.

I rode home with my father, an hour drive, in a pseudo silence. A silence about what we had just expierenced. He is greatful for my help with the massage and my calm demenor during the visit. There is enough arguing and crying and flitting about these days.

Lessons Learned

2007-09-24T00:18:00.001-05:00

It's been almost a month since I've left the hospice program.

I still scan the obituaries to see who has passed away, and whether or not I knew them. This last week one of my clients that I had been seeing for over six months finally passed away. I was surprised at first, but in the end I was glad that she is finally at rest.

A few weeks before I left, I had a new client who was recently diagnosed with terminal cancer. We bonded right away and I was able to give her her first massage ever. She was very excited about it and couldn't wait to brag to her daughters about her massages. I've heard through the rumor mill that she really misses me and the massages I gave her. It was when I heard that she missed me that I had the first pang of loss about leaving my clients. I wanted to say, I'll see her anyway! I'll go over there on my own! But I can't do that. With all the laws and ethics and liability I can't just go over and give this woman what she needs... though in doing it, it would be giving me somthing that I need, too.

I went into the job hoping to squash my fear of death and the unknown. That didn't happen exactly. I learned to face towards death and not close my eyes, but the fear is still there. I learned more about love and families than I ever thought I would. I learned to tell people how you feel and to let go of material things because they aren't worth fight over in the end. I learned about the letting go, but I haven't learned how to achieve it yet, and there is still fear.

I believe this is still progress and I hope that it will help me in my next challenge-- deal with the death of my grandmother who collapsed today and left the hospital with a prognosis of three weeks to live.

Anticipation

2007-08-29T15:59:00.001-05:00

Tomorrow is my last day of hospice.

It will be a good day.

The two people I see are the most recent clients, and they are great clients. Both had never received massage before and one took a little convincing, but they both really enjoy it.

Hopefully, all will go as planned... but as I've said before... don't count on your day going as planned in Hospice, they never do.

The First Day of School

2007-08-18T21:11:00.001-05:00

I am feeling the anxiety pains of leaving a job I helped to create.

I knew that when I left they would have trouble replacing me because of the qualifications required for the job. It's not that I'm extra qualified in the world of massage therapy. It's more that for this region I have the papers that say I know stuff. Hospitals like papers that say you know stuff. There are a few of us over here in the sticks, but not many. And of us, there are fewer who are up for the challenge of working with the terminally ill.

I helped start and develop the MT portion of the hospice program here and I am worried that it will suffer with my absence. Part of the reason I needed to leave was the amount of work it took to start this program and grow my private practice at the same time. It takes constant attention outside of the actual massages I give. I needed to be there continually educated my coworkers and clients and remind everyone what I needed to happen to make this program work. This is fine if you can dedicate all your time to this process. I was doing this very thing for my private practice and being a constant representative for two causes can be overwhelming.

I am worried that when they find my replacement it will be months after my last day and the momentum of what I helped start will have waned. I worry. I feel like a mother sending her child to preschool. Will it be okay alone for a while, without me to nurture it?

I have to have faith that it will survive and grow to be a better program. I am of course sad that it wasn't me to make it great, but I did help get the thing off the ground.

I can't forget my other child, the business that I started and is in desparate need of my attention. There are something there that I have neglected and need attending before they go awry.

Time to let go...

Enormous Guilt

2007-08-03T22:35:00.000-05:00

I heard a phrase last week and it all became clear. Compassion fatigue.

I had a fantastic experience visiting Chicago taking a class on improving my clinical outcome with head and neck pain. It was fun, educational, and it reminded me how much I love practicing massage therapy. I like working with people and making their lives a little better. I like seeing the improvement in their range of motion and out look on their day.

In order attend this class, I had to take two days off of work. When I returned one of my clients had passed away. I was crushed. I felt enormously guilty for not being able to see him one more time before he passed. I took a deep breath and let the guilt pass and then turned in my resignation.

It seems I'm not able to seperate this emotions from this job from affecting my life outside of the job. There are enough things that make us feel bad and decided four years ago when I began this career path that I was never going to feel bad about going to work again. I am not the right person for this job, and for this I am sad, but not devastated as I thought I would be.

I have learned a tremendous amount about the value of positive touch and the dying process. I will never regret taking this job, but I do not believe I will regret leaving it either. I do not ever want to have my passion become a burden, the minute it does, I will have to stop doing it because I am of no value to my clients if I do not love what I am doing.

I am hopeful that the therapist that replaces me will have this passion and bring what is needed to this position. I am excited about the chance I know have to dedicate more time to my private practice. To be reinvigorated by my recent educational travels and channel that energy and excitement to benefit my clients.

I think I may keep this blog going for a little while as I still have a month left of the job and I am sure with the stress of the job off, I will possibly come to some more conclusions about this experience.

I encourage all massage therapist with intrest in hospice massage to explore the possibilities in your area. It is definitely worth your time. A life lesson to say the least.

Two Years Already?

2007-07-12T10:57:00.000-05:00

It seems like I was just making posts last week about how I've been doing massage for hospice clients for a year, and now it's almost to the two year mark.

I expected this job to be more than a job in a lot of ways. When you sign up to bring comfort to the dying, you think to yourself "This is going be a an amazing, scary, fullfilling, life changing job". You pat yourself on the back for having the cahoonies to take the job in the first place. You feel good about the recognition you recieve from your peers, friends, and community. In a lot of ways the job is like how I expected to be. Some of the most common things I hear are "I could never do this", "It's so great that YOU are doing this for people who really need this", etc...

It didn't go to my head too much though, because I still had my mother, who is a hospice nurse, to give me some doses of reality. My sister said something to the effect "This is the last job I would expect YOU to take" and she was right, this position was a bit of stretch for my personality. The reality of the position, is while you are helping people while on visits, the times you are in the office are very much like any other job. There are co workers who don't shut up while you are trying to document your visits, nurses who still don't write a referral for MT correctly, state inspectors you have to perform for, and paperwork that boggles the mind.

The funny thing is, I have a much less glamorous job as a Chiropractic Assistant that seems less like a job than this one does. That was not what I expected when I signed up to "change peoples lives"

I've come to conclusion that this is a very worthwhile, fulfilling, giving thing to do as a massage therapist. It is definetely something that we need to see more of in hospice programs across the nation. When I graduated from massage school, I was asked to give the speech for my class during the ceremony. I gave a nervous speech on Passion for what we do... I felt that passion that day and I feel it for my private practice, but I don't feel it doing thing work for hospice anymore. People in hospice deserve that passion. I see it in the nurses and aides that work with them, I see it in the clergy and social worker that visit them, but I don't feel it in me and I think that is wrong.

I am thinking about leaving hospice, but I want the person who replaces me to be committed and passionate about what they are taking on. This has been a difficult realization for me to accept. It's nice to be thought of as an amazing person for working with dying people, but that's not the reason to do it.

I imagine it will take me several months to go through with this in the end. There are logistics and of course the aformentioned 'cahoonies' to give up in the middle of something that is going so well for the other people involved.

The First Has Left

2007-07-05T22:19:00.000-05:00

Today the first hospice client I ever treated was discharged from hospice. She had stabilized and even gained a pound of weight, so it was determined she no longer was in need of hospice services.

I have been wondering for so long what it would be like when I wouldn't have her on my schedule anymore. I have been seeing her once a week for two years. I honestly didn't think it would be because she was discharged, and it is almost a relief. I got out of having to deal with my first client pass away.

****

I've come to notice that a lot of people who are referred to hospice see it as the first step in a death sentence... and I guess I could see how they would feel that way, most of the time it is. Instead of taking advantage of hospice right away, they wait until the last minute when there is little time left for help to be given.

I guess I would be the same way. I would like to think that I'm enlightened and would face death without fear, but I know that isn't true. If there is one thing that this job has taught me, it's that watching other people die doesn't solve my issues. It's not the death of others that I fear, it is my own. That is something I still need to face on my own.

I pray for your hands

2007-06-27T11:58:00.001-05:00

I have been working for the last couple weeks with a man whose family is very happy with his hospice care. It took them a little while at first to adjust to the idea of their father dying and the influx of people visiting, nurses attending, and dad declining. They refused massage therapy at first, but then as things settled down, they decided to give it a try.

The second time I came, the daughter thanked me for my 'talent', happy that after I had been there the week before, her dad had slept four hours straight. While working with him yesterday, the client started coughing up flem (which he had been trying to do all day) and the daughter exclaimed "Could it be! Can massage do this for him!" As I wasn't pounding on his back and was keeping the work pretty light, I told her it was probably a coincidence. She kept calling my hands "miracle hands" and told me that they reminded her of her late sister's hands.

As I was leaving, the daughter was thanking me again and she told me that she "prayed for my talent" and that she was so thankful for my being there.

Maybe it's my midwestern upbringing, or my general lack of relgious particpation, but this effusive blessing and thanking was making me a little uncomfortable. I smiled and thanked her for the compliments and then continued with my day.

When it comes down it, I've had my share of blessings and prayers of thanks in my name. It is flattering and of course I like that I'm well regarded, but I don't like participating in other's religons. I don't mind people blessing me, but I think I would rather they didn't tell me.

The more I think it about it, I think it must be the midwestern upbringing.

The Ol' Switcheroo

2007-06-21T18:00:00.001-05:00

I guess I didn't realize how many times you get asked or told the same thing in this industry. It's kind of like being called "Shorty" when you're 6'10"... everyone thinks they are being funny.

For me, I get the "I was going to switch places with so and so and get his massage today!" and countless variations on that theme. The caregivers laugh and look to me and hope that I'll cave in and say "hop over to that couch and I'll massage you, too!" They know it won't happen, but you can tell that they hope one day they'll be wrong.

While, I never found those comments annoying, I did find them a bit baffling on how to respond... because my first thought is.. "Hop on to that couch and I'll give you a massage, too!" So instead, I laugh along with them and let the humor fill the room hopefully lightening their day a bit.

One of these days I want to find a way to bring massage to the caregivers of the dying as well. I think there may be an oppertunity for it to happen in the future, but as with everything in the health care industry, it's a logistical nightmare.

Until then, they'll have to resort to the Ol' switcheroo... though I haven't been fooled, yet.

Window of the Divine

2007-05-31T22:19:00.000-05:00

The sun shone in the window after a day of rain. The light gave vibrance to the vases of flowers, greeting cards and startched white linen sheets. No machines were beeping, no nurses were scurrying, and no one sat in the chair in the corner. Walking further into the room I saw her face turned toward the window awaiting the divine.

She used to be the hospice chaplin whose duty it was to bring spiritual guidance. I pictured her on the opposite side, sitting by the bed, holding the hand, watching the eyes of countless people looking in anticipation towards whatever it was that came next.

I held her hand softly and looked into her face. I could not help but wonder if her life as a pastor had prepared her for this moment. Would she get to go to the head of the line on at the gate?

Choices

2007-05-25T22:11:00.000-05:00

My boss stopped me in the hall to ask me a question. She said the foundation was looking for a way to do more for the hospice clients and their families. The idea was brought up to provide massage in some way for the primary care giver, and she wondered what I thought of this idea and if I could think of a way to implement it.

I'm initially excited by this idea. Admittedly, I am frustrated by my job right now and need some sort of change. The source of most of my frustration is that the three main clients that I see, don't talk. They barely acknowledge my existence. It's hard to convince yourself that they even know you are there and that they are benefiting for your service. In fact, one of them seems to wish I wasn't there, but she can't talk to tell me to buzz off, and she has such severe contractures that she can hardly move as it is. Although I give a lot of myself for this job without complaint, I am not completely selfless, I need to have some measure of progress.

In the last 6 months I have had these same three clients. There are no stories to tell about them because nothing changes, except maybe the room they are in or the color of the blanket on their bed. I have had new clients of course, but most of them have passed away with in a couple weeks, leaving me back with these three clients who are still with us despite the prediction that they would not be.

The thought of mixing the work with the caregivers seems like it would be a good way to bring some satisfaction to the job. I've been wanting to work with the caregivers since I started this job. They need massage just as much as the clients. I haven't figured out how it work, though. It would mean cutting back on my private practice, and I'm not willing to do that. So here I am left with a choice of being unhappy because one job is frusterating, or changing that job and being unhappy because I don't have time for my other clients.

I still have to think about this.

Several thoughts, really.

2007-05-03T18:04:00.000-05:00

In the last month or so, I've thought about quitting almost everyday. I don't like this feeling.

Often I feel like I don't know what I'm doing, but I know that isn't true. I also know that there is high turn around in this area because of the stress and 'emotional' toll it takes on a person. If I quit now, it will be because I couldn't hack it... I don't like this feeling either.

********
Meeting people who are dying is interesting because they are not the people they once were. Today I was at a client's room working with her, when I noticed a photo of her in better days was hanging on the wall. It was a professional portrait and she had her hair done up and make up on. Looking at my client on the bed, unable to speak, barely able to move, I barely saw the resemblance. That picture wasn't the person I knew and I felt a little distorted about the whole thing. For a brief moment, I was lost in my purpose.

********
I've been a terrible employee lately. I leave late, I hurry through things that can be hurried, I don't participate in office bru ha ha has (aka meetings, etc). I set my own schedule and am on call, so techinically I don't have to do any of these things, and I'm never really late... but I know that when I get in the car that I had really wanted to leave 10 minutes earlier. This is a pretty good sign that something needs to change with this job.

********
As I was massaging J today, he began to thank the lord for sending him comfort in his final days.

This job is hard.

2007-04-17T21:36:00.000-05:00

The truth is, this job is hard. It's really, really hard. It's not the skills or techniques that are difficult, but something more. It's getting to know families and then not being a part of their lives anymore. It's liking a client and hoping simultanously that they die soon so they can be free from pain, but hoping they don't so you can spend more time with them. It's recieving compliments for the work you do when you know that you are barely hanging in there. It's wishing that more people would accept hospice so you can keep your job and help others, but hoping you don't have new clients because your tired and don't know if you can handle another death this week or month.

This job is hard and it gets to me sometimes.

I had a 'scare' a week or so ago where I thought for sure my client was going to die soon. It freaked me out a little bit and I told a friend about it. He replied "Well, I hope your wrong". He was well meaning, I know, but it didn't sit well with me. It's a tricky line, hospice. I would not want to be in the kind of limbo that my current clients are in... they are waiting to die, not getting better, but not really getting worse either. I can't say they have a poor quality of life because they are very well cared for and surrounded by people that love them... but they are not participating in life either. They don't converse, they can't move themselves, they can't feed themselves. I don't wish them death, but I do wish them something better.

But these are not my family members, it is not my place to wish anything for them, and that makes this job hard.

2007-04-03T18:34:00.000-05:00

I saw D. today and asked her how she was doing. She answered me. Then I asked her another question and she answered that, too. When I started her massage she exclaimed in her Virginian accent, "My that just feels like there is ice in it!" when I applied the lotion.

D. hasn't spoken to me in months. She has barely uttered a coherent word, much less a sentence complete with southern drawl. I think she spoke to me more today, that she has the entire 9 months I've been seeing her. I told my mother what happened when I got home and she said "I hope you said your goodbyes to her before you left". I did.

My mom confirmed what I suspected. Often a person will seem to miraciously be better after a long time of illness, only to pass away soon after. It seems like it is the body's way of saying goodbye to everyone before it goes. I've never seen this happen before, and frankly I became a little nervous when D. started talking to me so clearly.

I very likey could be wrong. It could just be a fluke... but I don't know. When M. died, I was shocked and mad that I missed the signs when they were there in front of me. I think it would be better to prepare myself for the possibility of D. dying soon.

******

I've been writing this journal for awhile now in order to help figure out this job and death and living with these fears face to face. I wanted to extend an invitation to readers to ask questions or make comments about this journal. If there is something or some expierence you want to know more about, I would be happy to write about it if I can. Thanks!

Mantras

2007-03-19T11:03:00.000-05:00

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain. - Frank Herbert

How do we get through the day? We plan things. We say, Tomorrow I will do this. Next week this project is due" We think beyond our current moment or think of past moments and analyze them. Every once in a while Now catches up with us. We have stopped and the Now shows it's face and in that moment we recognize it. One of two things happen. We either exalt in inspiration or cower in fear.

We have our mantras, our Gods, our higher powers, our lucky charms to get us through those moments. When the moment has passed, we move forward, almost always forgetting about that profound moment, continuing in our pattern of past and future. Sometimes, when I am cowering in fear, repeating to myself "I must not fear, Fear is the mind killer..." it changes from the fear to the exhaltaion. I have a future to worry about and to plan for. I am what I create myself to be and I have the power to do it.

Two things happened this last week that lead to an experience of that nature. One event was very minor. It was an email quiz that asked "If you had one day to live, what would you do?" I couldn't answer it at first because I know what I day to live looks like and it doesn't leave a lot of options. I know this was a hypothetical question assuming that you could do anything you wanted, but I couldn't answer it that way. My 'now' was the truth of that situation and my fear was facing it. I must not fear... and the second truth of that matter is, I have many more days to live to that which I would want to do... "Tell them that I love them".

On the major side of things, my grandmother's health has improved enough, that she is no longer eligible for hospice. For the last 6 months I have been preparing for her death and impact on the family. I can't say how she feels about this, but I did try to imagine what it would be like. No longer will she go to bed at night wondering if she will wake up. She will have to start worrying about the future for a little while longer. It will be both exciting and frightening, I think.

I wonder if it is possible to live in the Now as an adult, or if it can only be these brief moments of fear and excitement. Does this change with the knowledge of dying?

Other Duties

2007-03-09T13:52:00.000-06:00

As part of duties for the hospital, I also provide staff chair massage and help out at hospital promotions. Since my hours are dependent on the number of clients, this is a good way to supplement hours.

On Monday, I am presenting Massage Therapy as a Career to high school students. The hospital wants me to focus on massage in the medical community, which I think is great. I'm excited about this because it is a change to explain that MT is much more than a vacation treat on a tropical isle.

I'm also exited that the hospital is sponsoring this. As a CAM (Complementary and Alternative Medicine) practice, massage is often disregarded by western medicine. As I have been researching this aspect of my presentation, there are lots of reasons presented why massage fell out of favor in the west.

I find it interesting that through out the world and history, massage has always been looked upon favorably. It seems that it only started to fall out of favor post WWII and we are still struggling for legitimacy today (although great improvements have been made).

Hippocrates, the same guy that gave western doctors their infamous oath, also stated "The Physician must be experienced in many things, but assuredly in rubbing..."

As I was reading, one of the theories for the disfavor, was not because the practice of massage did not work, but because cooler toys. Technology in medical devices and medications were making leaps and bounds and massage was just old fashion. The public was not exposed to massage as therapy, but only as way to vice in massage parlors.

I have to give my employers credit. They are small community hospital promoting another form of thought on health care. I hope I can inspire these kids to question the current health system.

It's simple, really.

2007-03-01T08:48:00.000-06:00

A good friend of mine said to me the other day "I haven't been up for reading it [this blog] lately. You have to be in the right state of mind". So I looked through my posts and realized, they are mostly heavy topics dealing with the emotional consequences of working with the dying. While those topics are what affects me the strongest, they are not the only ones that affect me.

It reminded me of when your best friend starts dating someone you haven't met. The stories that are told are the ones that are the most extreme... or make for the best story. How great they were on Valentine's day; how awful they were on their birthday, etc. How often do we talk about the every day things that make the relationship important?

The thing that has affected me the most recently has been quite simple. It hasn't been what the client has said, or the pain they are enduring. It has been what has been sitting on his bedside table. There are three containers carefully dividing the client's favorite candies. When I first saw the bright orange of the jellied orange wedges I smiled. There was something special about those candies. Next to the orange wedges were handmade nut rolls in a ziplock bag. They looked delicious. I couldn't stop smiling at the thought of the sweets on the bedside table.

When I was walking through the hospital later that week, I saw across the lobby into the gift shop. There was a rack of bagged candy and at the top were the orange wedges. My legs were on auto pilot and the next thing I knew I was handing over a $1.36 for the confection. The sweet citrusy scent brought that same smile back from the other day. Nostalgia... that's what it was. The simplicity of these candies reminded me of my grandparent's house. They had a special jar in the window that held butterscotches. The cellophane bag reminded me of the days when my parent's would give my sister and me their spare change and allow us to walk to 'the candy store', which was the convience store. They reminded me of some of the simple things that seem silly to talk about in comparison to 'the big things' in life, but they are the things that make the relationship important.

She gave me hug, I should have known then.

2007-02-21T19:41:00.000-06:00

I've been thinking about M. all day. When I saw her last week, she wasn't looking well at all. The visit was okay, but I really didn't feel good about it. I didn't feel like I was connecting with her like I usually did. She didn't always know where she was or who exactly I was, but she knew she liked me. M. gave me a hug good bye at the end of our last visit. I was a little surprised at the gesture because she had never done that previously. I had been under the impression that she didn't like hugs at all. Her son told me a story when I first starting seeing her about how she would maneuver across the room to avoid recieving a hug, and he was frankly surprised she was enjoying the massages I was giving her.

She passed away before I saw her again. I was surprised at first, but then when I remembered how my last visit went, I wasn't really that shocked at all. I was upset at first. I hadn't expected her to go this week. I was also upset that I didn't feel satisfied with my last visit. I could have done more, I SHOULD have done more. I was mentally waiting for certain things to happen that would clue me in that she was near her time, and I missed them. They were there, but I expected them to take another form.

I've been thinking about her all day.

What am I doing here? It doesn't matter.

2007-02-13T23:13:00.000-06:00

Some times we get so caught up in what we know, we forget what we were taught. Working in hospice has been like that for me. Everyday I wonder if I know what I'm doing, or if I'm doing it right, or if there isn't someone better suited for the job.

I decided to go back to the text books and review what I was taught. It was good to read what I already knew... I DO know what I'm doing. I was also good to be reminded of the things that I forgot. Not the the techinques or contraindications, but the purpose behind it. WHY was I doing this. It certainly wasn't because it was easy. I seem to remember telling people I wanted do something challenging (why did I ever want that!).

While re-examining my texts, I came across this:

"Relationships often revolve around what we do together, but when illness and death become a part of life, there must be a transition from "doing" to "being". ...Through massage we can simultaneously be "doing" while "being" with our friend, client, or family member." _ Gayle Mac Donald "Medicine Hands"

(The book goes into more detail, so if you're a massage therapist intrested in working with people with terminal illness, I highly recommend checking it out.)

In the end, it doesn't matter what I am doing. Not really. I've come up against this obstacle before and I have to keep reminding myself the other factors involved. The intent of my presence. The act of being there when others cannot bring themselves to be. I'm conditioned to produce a product with a tangible result. I do something really nifty with my hands and people heal and get up skipping and jumping. If only it really worked that way.

I know that there is a result from what I do, however I don't always get a clear answer to what it is. Some clients can't tell me, or they don't know how. Today I was lucky. My client is in a lot of pain on daily basis. He has three fentnyl dermal patches and morpine for breakthrough pain. As I massaged his shoulder, a constant area of pain, he sighed and said "that's better than any pain pill"

Damn' it feels good to be a massage therapist.

2007-01-26T18:47:00.000-06:00

As in life you never quite know what the next day will bring. For the last several months I have been working with the same few clients with out much change in their status (rate of decline) or in my massage plans. This week there were five new clients to be added to my list of visits. I didn't get to see all of them because some didn't make it until my scheduled visit, but it added a sense of choas and urgancy to my day that I found I had kind of missed. Things had been starting to feel a little ho-hum lately, and this boost in activity was welcome. (It coinsided with a successful marketing plan in my private practice that have left my arms a little sore and about ready to fall off!)

There is a certain excitement to new clients with illnesses that are fast moving. I only work two days a week, so sometimes I don't get to meet the clients, but when I do there is an feeling of action about the first visit. I wonder what I can do for the person and how much time they have left. Will I have enough time to make an impression on them and their family? Will I be able to ease their pain or suffering?

*****

As much as I would like to look at myself as a completely alutristic human being, I do have elements of pride that surface even in this profession. I work very hard to make the visit about the patient... but I'm proud of that fact too. One of the things that I've learned about myself after working hospice is that those all to human traits such as pride, anger, resentment, apathy are still present when your job is 'for the greater good'.

I don't think that is wrong, because we are human, after all. The skill comes in managing those reactions and emotions and choosing the right time and place to express them. Many people say to me (and my mother, a hospice nurse), "What you do is so great." which I usually translate to "I don't know if I could ever do that, thank you for doing it so I don't have to". There is a lot of beauty in working with people who are dying, but you see a lot of ugliness as well. Family squabbling, emotional distress, side affects of drugs or tumors... it's not pretty. Though it is easier to face other people's problems than your own. We leave these families and go back to our own with a new appreciation for what we have. The time we have on this Earth, the relationships that we've built and the love that we share.

*****

So, going into a new clients home and seeing the potential for influence on the last moments of their lives is exhilerating. If a family memeber sees me calm down their mother who's been agitated all day, I feel like I've earned my education. In truth it is mostly pride, and I try to keep it in check, but damn it feels great to be good at what I do.

Fatigue

2007-01-12T09:37:00.000-06:00

One of the benefits of hospice is that it relives the fatigue that often assails caregivers. Taking care of a dying family member is a lot of work. Especially when they can't eat, go to the restroom, take baths, get dressed, or medicate themselves.

Hospice supplies nurses, aides, and volunteers to help do all of that for you, so you can take care of the everyday things about life as well as spend quality time with your family member. It is really a great service.

Unfortunately the fatique hits the nurses, aides and therapists as well. Two of my clients have been with us over 6 months, and one just hit the year mark. Neither of them can care for themselves or can speak. I feel tired when I think about going out to see them. Each week they are they same, not worse, not better. When I am there I focus and bring my attention to the client and do my best job possible, but prior and post visit, I get tired. I find myself wishing for some sort of change so that my SOAP notes and weekly reports can have a little variety in them.

Another one of my clinets, one that has dementia, but is still fun to talk to (even if I have to negotiate the conversation through her perception that I'm a realtive, or that we are at a family reunion instead of a nursing home) just hit a turn in her health. I think she will be declining rapidly. It feels unfair that she is starting to decline and these other clients are not. I know it is selfish, because my real hangup is that they aren't as fun to visit as other clients.

I see the lovin' in my baby's eyes

2007-01-04T21:37:00.000-06:00

Driving through the snowcovered fields of Iowa and Minnesota, a song was playing as I returned from one of my visits. It was a song I'd heard before, but this time the chorus, caught my attention.

I see the lovin' in my baby's eyes...

I immediately thought of the client I had seen earlier and what I had seen in her eyes. Confusion, fear, nervousness, that's what I saw in her eyes. She doesn't know why I'm there, and she can't speak to ask. I have been telling her every week for the last year that I am there for her, to give her massage, comfort. Her look rarely changes.

I saw exhaustion in another client's eyes. They were haggard, as if she had been awake all night. Her eyes lit up briefly when she saw me, but she doesn't really know who I am. I bring light to her day, and I see it in her eyes. When, I leave, I notice they start to look tired again.

Another client's eyes were far away and seemed resigned. She has recently moved to the nursing home and I haven't seen her smile since.

All of these client's have dementia of some sort. Even though they couldn't tell you the year, or where they are, or even speak at all, you can see in their eyes, that deep down they know. They know and are waiting.

She's a city girl, she doen't know how to can.

2006-12-21T18:41:00.000-06:00

As I was walking past rooms in the nursing home, I heard an eldery guest of one of the residents state "Well, she's a city girl, she's doesn't know how to can". I can sympathize, I don't know how to can, either. It makes me feel a bit out of place.

I haven't written in a while for a couple of reasons. For several months the hospice census has remained low. I've had the same three clients with new clients here and there. However the new clients seemed to pass away with in a week or so of me seeing them. My job started to feel hohum and and writing about it seemed a chore.

I was thinking about that today when I decided I should probably write about that a bit anyway.

I got into this job knowing next to nothing about what it would entail. I was prepared for it to be emotionally gut wrenching and dishearting. I wasn't really prepared for it to be like other jobs... the kind that you sort of get into rut and find a little dull sometimes.

Sometimes I don't feel like I matter much to the department because I'm considered a non vital service. The type of massage I perform in hospice is vastly different from what I do in my private practice. On the technical side, I feel like I don't do anything at all. I know it's a lot about intent and what you are there to accomplish...which is providing positive touch, not releasing muscle contractures. Still, when the HHA are applying lotion after baths and then you come in to give a light massage which entails applying lotion... you start to feel redundent.

I have three new clients this week, so things are picking up. That means new people who I can interact with and affect positivly. Hopefully it will blow a little spark into the job and make me feel usuful again.

****

Could this happen to me?

2006-11-28T18:16:00.000-06:00

Last night I tossed and turned as thought about what my mother had told me the day before. My mind kept coming back to the situation and going over it my head, while my stomach churned with anxiety at the thought of dealing with it in the morning.

My mother had brought me news related to one of our clients, but it was not about her exactly. It was about her daughter-in-law, who was one of her care takers (along with her son). The DIL found out that she had metastic breast cancer this week and it was too late to operate. She is 40 years old with two school age children and a mother-in-law slowing dying in the back room. Her husband, the son, is due to leave for Iraq soon.

This affects my job only in that our client may be moved to a different care takers home, and that may be out of our range of visits. This is not what I was thinking about all night. What I was thinking about was the awful situation this family has been put in. If the treatment doesn't work, she may well end up being one of our hospice patients. Her mother-in-law may outlive her, because metastic breast cancer is nasty business. And all these thoughts bring up a strange fear in myself. For some reason I am nervous about seeing my client this week, though my client status has not changed.

I started thinking about why it is that Hospice hasn't been has hard as I thought it would be when I started the job. It occured to me that all these patients I see have accepted, more or less, that they are dying and they aren't going to make it. They are taking steps to ease into it, and hospice is one of those steps. It is easier to face death, when the person you are seeing is on the same page. Like it or not, it is also easier because my clients are all old (between 75-90). I expect people of that age to be dying.

This DIL is not one of my clients, but I do see her each week when I visit my client and all of a sudden the anxiety I've been expecting for the last year has popped up. There are some reasons that I suspect: She is closer to my age, she wasn't suspecting breast cancer (she was feeling tired, so everyone is in shock), and she hasn't accepted death yet. She is going to try and fight it; of course she is, and good for her... but what if she fails. What if I see her each week when I'm treating my client and she isn't getting better. What do I say to her? What can I do for her? What if she gets worse and her husband is sent to Iraq and is killed and her children become orphans? I can see myself looking away trying not to meet her eyes.

It's ridiculous how my mind can blow things out of proportion in this situation. How can I face my clients each week and not face her? I think the answer to this question lies in another question I ask... Could this happen to me? I've got a while before I grow old, I can face that. Surprised by a deadly cancer at young age... that could happen at any time and it scares the shit out me when I have to face it.

The anxiety before a situation is always worse than the situation itself. I will go and see my client and it will be fine. No one is looking for answers from me. I will do what I need to do, including a hug if she needs one. It is another step in facing this fear.

Foot in the mouth

2006-11-18T23:00:00.000-06:00

I feel like a complete idiot most of the time when I talk to family members.

******

The other day I was standing around the office waiting for a meeting to start and owing to the odd configuration of our offices this meant that I was standing in front of bookcase trying to look inconspicuous while skillfully staying out of the way of passers-by going through the narrow hallway. The bookcase was filled with a variety of books related to death and dying. I picked out a paperback with black cover and white text splayed across the front in a manner which can be easily summed up as 'early eighties'. The title escapes me now because it was so similar to every other book in the case. Believe me when I say it was along the lines of "Death and Dying: The Final Destination of The Journey" or something equally enlightening. The author's name was decidedly Germanic with plenty of umlauts as well. The perfect cover for someone who was trying to look engrossed in standing around doing nothing. That wasn't the only reason I picked that book to read. When I opened the cover, on the inside in pencil was a name. I blinked and read the name again and realized her family had probably donated the book as a gift after she'd passed away. It was from the library of one of my favorite clients.

The woman in the book related a story about a young doctor who admittedly had never seen a dead person before. She started to talk about how we avoid being around people who are dying because we don't know what to say. We feel stupid being encouraging, because we know they will soon die. This was as far as I got before the meeting started and I put the book back.

I forgot about the book and what I read for the rest of the afternoon. It is that way with meetings I think. They are like television a lot of time. Your brain turns off and runs on auto pilot and you forget about things for a while. I think it has something to do with the fluorescent lighting.

It came back to me when I remembered this weeks visits and remembered the colossal foot I inserted into my mouth more than once this week. A lot of time I don't see the family members while I see a client. They leave the room, or they are not there (because they are in a nursing home) in first place. This week I had two new clients that were imminent, so they were surrounded by family. My massage skills did not suffer, nor my interaction with the clients... but with the families I kind of bungled it. Things as simple as "Are you going to the parade this weekend?" were answered with a simple "No, I'll be here" and a look that says "with my DYING mother!"

Both clients have since passed away. This means I won't have to face the families and possibly embarrass myself again. I also won't be able to say something more appropriate. This is where I remembered the book. I still have no idea what to say to people. I think most people just want to have normal conversations, but I never know. I think I may have to inconspicuously meander by that bookshelf again to find that book. Maybe it will tell me what to say. I'll let you know if it does.

An Old Mansion

2006-11-10T10:58:00.000-06:00

There were problems with visiting N. from the beginning. When I was in the office earlier in the day I heard nurses complaining about arriving at the house and banging on the door with no one answering. I called the phone number given to me, it rang endlessly. The house was a old 19th century testament to what the street used to be... now it stood between a mechanic and a small town museum on the life of the pioneer.

I was given a cell phone number of the daughter, but there was still no answer. At least I was able to leave a message, this time. It was to be my first visit and I had not spoken to the family before hand, and this made me a bit apprehensive. I knocked at the old door.

The door was answered quickly by N's granddaughter and I was greeted pleasantly and led through doors that were locked behind me and through a dim hallway of musty archaic air.

It was N's birthday and there were visitors and cake being eaten around N's bed, which was placed in the middle of what could only be described as a parlor. Above the fireplace was an arrangement of arrowheads and several examples of antlers. Shelves of china and porcelain figurines were scattered about the room. N. sat on the edge of his bed toasting his 92 year with a cup of coffee that he was not going to let go of, massage or not.

N was not going to lay down or relinquish his cup of coffee, but he did agree to a back massage. In order to accomplish this feat, I chose the 'sit next you' method and found a spot next to N on the bed, using my inside hand to perform the massage and the outside hand to brace N's shoulder so I wouldn't push this fall leaf of a man off the bed. The most response I could get from him was a slight nod or shake of the head when asking yes or no questions, unless the lotion wasn't properly warmed. Then a dirty look and cry of disgust was passed my way.

The granddaughter told how N would refuse to lie down and would sleep sitting up on the edge of his bed. Through other nurses I gathered stories she told them as well. Cell phones did not work in the house, and sometimes the lights would flicker and the tv turn on and off by itself. One day the grandson saw a glowing light move about the room and they found N lying down with his arms in a protective posture over his face with one arm out. He was found this way more than once.

It could have been tricks of the light, or the actions of a man near death. Or, as his granddaughter speculated, it could be someone lingering waiting for N to joining them. His wife's ashes were in the cupboard next to him. If so her wait is over today.

That's Not The Way I Planned It

2006-10-25T22:35:00.000-05:00

"I haven't given you one of these yet, have I." a voice said behind me. It was more of a statement than a question. I turned to see a gray haired grandma handing me a piece of hand made room decor. She explained how she made it from a milk carton and punched holes in the side, where she crocheted a border from florescent orange yarn. "You just stick something in the middle and your done."

I thanked her, still slightly befuddled from being surprised by this gift, and she returned to her table to continue with her craft making.

That day was one of those days that just doesn't go as planned. My mother warned me about those kinds of days. "Don't get to attached to how you plan your day," she said, "things have a way of changing on you."

Isn't that the truth. A few weeks of routine will really lower your guard when things start to get exciting in this job. The day started with me getting an hour behind on my visits because one of my clients was getting her hair done when I arrived and it would have taken longer to leave and come back, rather than wait. The day ended with me leaving work 15 minutes early because my last client died before I got there.

I don't think I would have been prepared for that, had I been running on time. I haven't yet been present for a death, and sincerely hope that fate will steer me clear each time. That the family will decided I wasn't needed because the time was soon, or that they just don't make it until their next appointment. I want to be there for them for as long as they can benefit from massage. I want to comfort them; I want to comfort their family. I don't want to be holding their hand when they die.

I tell myself that I want the family to be the ones that are there for them in the last moments, and that is true. I don't admit to myself that I don't want to face that initial emotion. I don't want to see life leave someones face. I'm afraid I wouldn't know what to do.

*****

While driving between visits, there was a near accident between myself and a oncoming car. It was a small town with an uncontrolled intersection and they seemed to know where they were going. Only my unfamiliarity with the intersections in town slowed me down to look for the stop sign. I almost didn't stop, because I didn't have one, but I noticed just in time, they didn't either. At the speed they were going, I would have been seriously injured. My first concern when I imagined the accident was whether or not I would be able to use my phone to call the office and let them know what happened, and adjust my schedule accordingly. Then,"how would I work with broken bones", not once did I think about 'what if I had died?'. I try not to think about that when I'm driving.

Working with dying people is not the quite the same as facing death. I thought it would be when I started this job, but there is still that fine line. They are still alive when I see them. I'm not a nurse or medical professional, so my services are considered 'non-critical', which means if death is imminent, my services are cancelled most of the time. I've learned a lot about the act of dying, but I still have not faced my fear of death head on. I've only skirted around it, acting brave and seemingly unafraid.

Beyond your wall of misgivings

2006-10-19T16:01:00.000-05:00

I have found a release working with the dying. A release from my own strictures.

Meeting people is never easy. There are so many expectations and interpretations that are made. "What did he mean by that?" "So, does this mean she really likes that kind of music?" First meetings are guarded and veiled. Walls of doubt and misgiving need to be scaled. Most of the time our true selves don't come out until much later. I call this time of meeting people "The Assessment". Observations need to be made and calculated against risk factors. This can be done in a matter of seconds or maybe days... or for some people months. Weeks and weeks of trying to impress one another or leaving subtle clues of innuendo to who you really are in hopes that they pick up on it and translate your message. Your message of "I want to be your friend" or "Don't talk to me anymore".

The difference with my clients is two fold. I'm not there specifically to get to know them or be their friend. That is something that is a side effect of what I do, but it takes the pressure off. I don't need to worry about if they like me or not. The second is, they don't have that kind of time. If I want to interact with them on any kind of meaningful level, the walls have to come down. The ritual must be bypassed and being straight forward is the easiest way.

In recent months I have found it easier to get to the heart of the matter. I used to candy coat things and hope that I could avoid situations that are uncomfortable. I still hope I can avoid them, but if I can't it's been much easier to say what is on my mind.

There are still boundaries. Every new client is not my new best friend and I keep as much private information to myself as possible. My work with them is about their needs not mine and that's kind of a relief as well.

Taking this outside of work I feel that I waste a lot of time hiding myself from people that I want to know better. I read in the paper today that Stevie Wonder received a Lifetime Achievement Award from the National Civil Rights Museum and in part of his acceptance speech he said this "...Tomorrow is never promised to any of us. You must be the best you can be right now." I think that includes dispensing with pretense and falsity as well. A friend of mine will often say "Say what you mean, and mean what you say". This is key to presenting yourself honestly and truly.

How would things changed if we didn't feel that tomorrow was promised to us and we said what we meant?

How would we treat others, or present ourselves to others if we honestly considered that they might not be here tomorrow or next week.

I hope it would be with honesty, respect and integrity.

Knocking On Unknown Doors

2006-10-13T22:22:00.000-05:00

With each new client there is a new world upon which I enter. I start each visit with an address, phone number, name, and diagnosis. Each new client is a challenge, an unknown that I must face as I walk up to unfamiliar doors. Questions race through my mind as I wonder who will be waiting for me. Should I knock or walk in? Should I say the word 'dying'? Should I leave my shoes at the door? Will this be a well kept home? Will this be a 'dysfunctional' family?

Behind my uniform and name badge is someone who feels she doesn't quite know what she's doing. "All I do is rub their feet" I say. "How hard is that?" I remind myself that half the challenge, is the attempt at doing it. The willingness to go into a home filled with grief and attempt to do something that is frightening to most everyone. Massage with hospice patients is not difficult in terms of technique. It is the simplest form of massage. Much of what is difficult is the intent behind the motion. The putting your fears aside to alleviate the fears of others. To look family in the eye and say "If C is with us next week, I will be back" and not feel embarrassed about pointing out that I might not be back. To touch someone who is dying. To give to them what their family possibly cannot.

I do this each week with trepidation. I wonder will this be the last week I can face this, and by the end I say "No, it will not". I started this to challenge myself and beliefs and I'm not finished yet.

*****

The trepidation on the job is matched by a over-assurance off the job. When I am around others not involved in hospice, I feel like I am the keeper of sacred knowledge. My ego is kept in check with every hospice visit that follows and by my mother. My mother is sweet and unassuming in nature. She has been working with the elderly either in nursing homes or hospice for 35 years. My experience with this is nothing in comparison. I imagine that the novelty of newly acquired knowledge will temper itself and then I will see this all with less fear and cockiness and hopefully a higher level of understanding about life.

The days when ... are gone.

2006-10-10T22:44:00.000-05:00

Today I went to see my client in the Long Term Care Facility (a.k.a. Nursing Home) where she has lived for several years. As I was waiting for the elevator I noticed a board that listed the residents and what rooms they were in. It was a very nice wooden frame with each name printed on a golden plate. It looked very elegant, except for the half a dozen white print outs placed in their for the newer residents. I wondered, did they give up on having the names printed on the shiney metal plate, or are they just waiting for the order to come in and the white ones are just place holders. I wondered how long it took to get a name plate, and did people pass away before they arrived. Before I could ponder any more the elevator came and I was on my way to my visit.

After the visit, I bumped into one of the hospice nurses who was there to see a different client of ours that had denied massage therapy services. This client wasn't doing well, in fact, should could die tonight, if not tomorrow. I remembered her name was one of the names on the white strips of paper.

The elevator opened for my return to the main floor and it was filled with staff from another floor. They were talking work business and I followed the conversation only on the basic level. As they were exiting the elevator on the floor before my stop, I heard, "...the days when people are here for 15 years are gone. Now it's just rehabs and short terms..." and then doors closed. At first I thought she was talking about employees working for 15 years or more at the same place, but quickly realized she was talking about the residents. She sounded a little wistful for the old days. I imagined she missed getting to know residents and their families over a long period of time.

As I exited the elevator I pondered why this was happening to the nursing homes, and it didn't take long for me to cite hospice programs as a reason. Of course hospice had an influence! Hopsice programs were making it possible for families to care for their loved ones at home for as long as possible. They weren't shipped off at the first sign of trouble, instead we were helping them until their illnesses required the care of a 24 hour nursing solution. To me this meant more families are taking care of each other and more people were dying at home among their families and comforting surroundings.

Maybe hospice can't take all the credit or blame, as it may be, but we can hope that we are doing some good and that it is starting show up in the larger picture.

Remembering whose death it is

2006-10-02T10:21:00.000-05:00

It doesn't always take 6 months or less. Sometimes it takes longer.

It sounds great that they are living longer than expected, but I should not forget that in that amount of time, they have still been slowly dying. The difference is that you don't notice the change from day to day, or week to week. It's a lot slower. You have to look from month to month.

Next month it will be 1 year for E.

E. used to follow me with her eyes. She would grumble if my hands were cold (a consequence of traveling from home to home in the winter). Then about 3 months ago, she would just open her eyes and then go back to sleep. This last week she didn't even do that, she just remained asleep.

One of her caretakers asked me if I had noticed any change in her status. I told her about the sleeping through the visits and the very minor changes, but had to admit, I hadn't seen much change. She asked me, "Don't you just wish sometimes that she could just 'go' and have it over with?" The caretaker said this with sympathy for E. Feeling that month after month of mostly sleeping and not being aware of your surroundings had to be a tedious, agonizing way to die.

Is it? I don't know. As far as we know, E. isn't in any pain. Maybe she is dreaming an endless dream, interuppted only by her Nurse cares for the day. Maybe the goings on around her add a backdrop to her mental weavings. Maybe it is all black and there is nothing. There is no way to know at this point.

When it takes along time to die, it's easy to forget whose death it is. The family and friends start to feel the ancipation of the end wear on them. It is exhuasting to wait and watch, and there is this cycle of emotion that you keep going through. Happiness that you have a few more momements, despair because those moments aren't with the 'person you knew before', exhaustion from waiting and anticipating and planning, and guilt for wishing it could be over with already.

I hope for E.'s sake that her life is not the tedious, angonizing death that it is for the observer picturing what it might be like. I hope that if death is what she wants, it comes to her soon, for her sake.

There were tears

2006-09-19T10:04:00.000-05:00

My shift ended with grandma crying and me leaving for a better time promised in the city.

As a family we had decided to help her clean her house once a month, from top to bottom. We washed windows, curtains, walls. Dusted knick knacks, photos and shelves. Some of us were there at 8 am ready to tackle at least 2 years of dust in the living room and most likely a decades worth up stairs.

I was nervous about this day because there are a lot of us, and we're known for stubborness and possibily being a little surly at times. Promises were made to 'not fight' for grandmas sake. But as promises to not fight usually go between siblings, they are well intentioned and almost impossible to keep.

I have to admit I was having good time for most of the morning. I got stuck with cleaning blinds and dusting knick knacks, but it was a lot better than what my aunt was doing... steam cleaning the bathroom wall. My mother was in her element. That bit of craziness that had come over her when we first heard the news about my grandma's health had passed.

It started to go a bit down hill after I recieved a phone call from my hospice job that one of our clients had died. The nurse just automatically called my cell phone, even though it was saturday. It normally would not have been a problem, but it brought into focus why I was cleaning my grandma's house for her... because she couldn't do it herself... because she's dying.

Around lunch time, other family members arrived, and we early birds were proud of our progress and revved up on a cleaning roll. It all seemed so lighthearted and easy, until my newly arrived aunt stormed out of the room with barely a word, and my other aunt giving her the finger behind her back. Looking out the window my aunt was crying in my grandmother's lap. Sobbing. Distraught.

Sigh. How easy it had seemed at 8:30 that morning. I didn't get to give my leave to my grandmother because when I went to find her, she was in the middle of storming off to her room crying and asked to be left alone. Every door to the house was blocked by two or three people crying or consoling or trying to figure out what exactly was going on. I consulted my father briefly about some directions, took a circuitous route out tof the house and left them to their tears as I sped away through the river valley and over the hills looking for the way out.

Drama and Rejection

2006-09-17T23:28:00.000-05:00

Thursday I was summarily rejected without second thought. I called B. to schedule her massage and her daughter answered the phone. She had just gotten in the Saturday before from Colorado to stay with her mother, so I explained who I was and I barely had time to finish before she just said, "No. Oh No, we're beyond that at this point," quite matter-of-factly. "Thanks for calling though!" she added. I spoke with her a little more but the whole time was fighting the feeling of utmost rejection.

She hadn't even considered what I offered for her mother. She did say she was sorry, but today wasn't a good day. She just blew me off like kitchen help. "No carrots today!" I was taking this way to personally.

****

Lately I've been feeling superflous. The clients I have currently have been hanging on quite a bit longer than their families expected and they are getting tired. They are tired of all the people in their homes every day of the week. They are tired of rearranging thier lives to take care of a dying family memeber. I see doubt in their eyes when i arrive as to what the point of my being there is. Just another person traipsing through their home.

With B. I felt a purpose with each vist. She enjoyed my company. She saw the value in my sometimes undervalued career. She seemed to know why I gave up a career in design for massage thearpy. Her daughter saw me as something extra and unneeded.

***

I knew there was some stigma attached to being a massage therapist. The most commonly asked questions are not: How can massage help me? or What is a massage like?

They are: "What if they have a hairy back or are disgustingly fat?" or "So, are you like that girl on seinfeld (or like phoebe on Friends)"?

Not only do I have to educate the community, the health industry, and my clients on the value of massage. I have to convince my friends and family I'm not a flake or a sitcom charecter. That I didn't sell myself short and waste my intelligence on something so servile.

I'm a lousy designer, but when it comes to massage I have a gift and passion that has allowed me to tackle challenges that I ran away from my entire life. How can I be selling myself short when it has given me strength face towards my fears... I may still sheild my eyes from fear, but I'm willing face it and hope it passes over me.

Traveling down memory lane

2006-09-11T22:45:00.000-05:00

Every street has a memory.

When you grow up in a town you remember when you wiped out on the sand patch while riding bikes over on 3rd street. You remember hiding behind the old train bridge smoking your third cigarette and finally 'doing it right'. You remember that day it rained so hard walking home from school that everything inside your bookbag got wet, too.

Memories of the streets and houses pile up and give you that feeling of your 'hometown'. You have a history with the place. It gives you an anchor and it helps define what you think of home. As you get older you still make memories of the road, but they are clouded by the ones from childhood.

I didn't grow up in this town. My memories are clear about each street. This house is where M. lived, she died of stomach cancer. If you keep going down this road and turn right, you'll be at J. house. He was momentarily distracted from his pain with back rub.

I travel each street of this town towards life and death. The houses permanent markers in my mind for each one of them.

I may forget their names, or diseases.

I won't recognize their family.

But the street will be there, and house I will remember.

I will know that I touched, literally and/or figuratively- the people who lived inside.

It's kind of a morbid trip through town these days as each month adds more streets and houses.

I don't feel haunted, or spooked or sad really.

I feel connected to the history of the town in a way. Less as a participant and more as an observer.

I'm unsure of how I feel about all this.

1 Year Anniversary

2006-08-30T17:12:00.000-05:00

I've worked for the Hospice for a year now.

I'm surprised I made it a year. Every two months I told myself I was going to quit as soon as an opportunity presented itself. But then it seemed I would get the hang of things and it wouldn't be so bad, much like the first year of any job I suppose. I'm glad to have that first one under the belt.

The job is still tough, but I was reminded yesterday why have been sticking it out:

When I arrived to see M. yesterday, two people where in her room with her. I introduced myself and told them I was there to give M. a massage. The woman sitting on the bed replied with "oh can I be next?" in that joking fashion that I encounter often. Before I get a chance to answer, M. practically yells "Yes! It's only your feet it doesn't take that long. You should do it!" As she's doing this she's kicking off her slippers to get ready for her massage. Chuckling as they walked out the door, we assure M. that nobody else needs a massage today.

After the massage I go out to meet the folks that were in her room. I find out that the woman was M's daughter, so I fill her in on m's status. The daughter is surprised that her mom is so accepting of massage. Not just accepting, but excited to the point of kicking off her slippers. She tells me that she's never been one to like hugs or touch. When her son who was away for 6 months at a time, would return home, she would be sure to move to the other side of the table so he couldn't give her a hug. She was so happy that M. was accepting and enjoying the massage and improving her quality of life.

There are so many things about people's lives that we don't know. In the short time that I get to know these people, I've barely scratched the surface of their life experience. Yet, I am told I profoundly affect the last few weeks or months their loved ones lives.

It's for these reasons that I put up with the things that I don't like about the job.

This is what I was waiting for

2006-08-23T22:46:00.000-05:00

The reason I started this journal was to explore my expierence with hospice as a massage therapist. I wanted to know if I could hack it. So far every aspect of this job has been a challenge. I have to work with a huge hosptial system, I have to be evaluated by the Department of Health, I have to document everything I do and say. I have to work with people I like and don't like and they are ALL dying. Some of them painfully, some quickly, some gracefully and some slowly.

It's been hard. It's been frusterating. Mind numbing and scream inducing. It's been rewarding, too. I've learned to talk to people I don't know. I've been a comfort to family members and clients who are in pain. It's all very overwhelmingly good and hard at the same time.

My grandmother was admitted to the hospice in her town today.

I didn't think I would be tested in my hospice journey in this way. This is what this journal for, however. To talk about this expierence. This last week has been tough, as every client is a grandmother in my eyes and I leave exhausted.

I will get through it and it will be fine.

Kindred Spirit

2006-08-17T22:30:00.000-05:00

De ja vue doesn't describe the experience I had today. I met who I wanted to be in 30 years.

I heard it in her voice when I spoke to her on the phone.

I felt it the moment I drove up to her house, but I passed it off. She had a beautiful house built in a style I liked.

I resisted it when I walked into her house and loved everything I saw. I chided myself for admiring someone else's objects. I was here to see her, not her furniture. I closed my mental eye to the things around me, but I wanted to touch everything.

I knew when I saw her. I don't know how to explain the feeling I got... it was more of an understanding. I knew. I knew what? I don't know, but I understood that the essence of this person I was looking at, was at a level I hope I achieve. I tried to describe the meeting to a friend and he suggested the term kindred spirit.

Kindred Spirit? I feel presumptuous at thinking this about her.

This meeting made me unbelievably sad. For she won't be here much longer and I've only just met her. Is meeting her enough?

On the verge

2006-08-14T22:21:00.000-05:00

It has only been a week since we found out my grandmother's cancer is not treatable. We found out that it will probably be fast. That the cancer has spread through out her body.

I haven't slept much since. I spend half the night composing a meaningful eulogy for her funeral, and the other half realizing I don't know my grandma as much as I thought I did. She has almost 50 grandchildren who have lived in the same town as her, and who have visited her more often, and who know her better than I. This is when I start to cry.

What's bothering more than my grandmother's illness, is my mother's inability to handle the news. This isn't her mother that's dying, it's my father's. She's also a hospice nurse and has worked with the elderly and dying for 35 years. She is freaking out. I don't think I've ever seen my mother this worked up. She was more composed when her mother died, than she is now.

I think she is less worried about grandma's illness and impending death than she is the aftermath. My dad comes from a large family, and there will be... squabbling. It won't be pretty, but I don't think it will be the end of the world, either. But the anticipation of it is stressful.

As a daughter, I don't know how to help my mother. As a newly trained hospice employee, I don't know how to help the expierenced nurse.

I don't know what to do.

The other side of the picture

2006-08-08T22:02:00.000-05:00

My grandmother doesn't like having her picture taken anymore. In the past, she would just laugh it off, or tell us to take a picture of someone else, but she would relent in the end. Not so anymore.

Yesterday came the news that the malignant melanoma had reoccurred after last years surgery. After researching it a bit I learned that a return of this sort of cancer is usually untreatable.

I have gotten the feeling sometimes that my grandmother has been waiting to join my grandfather who passed away a year and half ago. I wonder how this news will affect her. Is this what she was waiting for? Did she know all along? Is she relieved to finally know? I don't have these answers yet. I don't know if I'll get them. My work in hospice has not prepared me for this side of the picture. The side of the family member.

I want to tell her 'Good Luck'. Good luck with your death and in your afterlife. Good luck and don't be scared.

I writing about this here because I am hoping that my grandmother will utilize a hospice in her town. I'm hoping that my experience with hospice will help me. And I think she has 6 months or less.

Saying Hello to Strangers

2006-08-03T16:17:00.000-05:00

I walked into the hospital room of my next client.

I have done this time and time again. I smell the cleaning agents used on the equiptment and the bleach on the sheets. I notice the harsh whiteness of the light, and the frail body encapsulated by the large hospital bed. If you close your eyes and listen, you can hear the fear on the edge of people's voices.

Death is coming soon, and they don't know what he looks like. They are waiting for a stranger to appear at their arm to lead them away to a different place, and yet they've always been told not to talk to strangers.

Sometimes the client is ready for this meeting, but the family is not. They stand blocking the door keeping a lookout for anyone suspicious. They know, deep down, they'll never stop him from arriving, but they remain vigilant.

Sometimes the family has accepted this visit from death, but do so with such remorse and bitterness you can taste it in the air. It's sour and unpleasant. As a caregiver, you feel out of place. The family looks at you closely, just to make sure you aren't the awaited stranger, and is disappointed that you only offer comfort and not absolution.

Sometimes... This time, a banquet is waiting. Death is welcomed with open arms by all. The families leave the light on for him, and welcome all that enter that room. The client smiles at you, shakes your hand, and the light in their eye betrays their failing body. They know there is nothing to fear. They feel lucky they get the pleasure of one last (or a first) massage before they go. Their presence takes over the sterile room, and walking in is like walking into a haven. Your skin warms to the sunlight streaming in, and your ears open to the sound of laughter and joy. You leaving wondering if that client refreshed your soul more than you relieved their pain. It leaves you pondering, hoping, wishing that you will die with the grace and beauty that you were privileged to witness on this day.

It's all I think about.

2006-08-02T12:04:00.000-05:00

When you go to see a shrink they ask you 'Do you think about death, often?"

I do.

I think about it everyday.

It comes with the job, of course. I'm constantly wondering who will be 'with us' on each given day. I hold their hand when they ask me "how will I know it's time?" I hope that their deaths are peaceful and they are surrounded by loved ones. I think about how I can make things easier for them, more comfortable, less painful. All of this is what I expected from my job in hospice.

What I did not expect was the proliferiation into my daily life the topic of death would become.

I watch as family members struggle over living wills and I wonder "Do my parents have a living will?" It's just a passing thought at first, but I can't forget about it. I'm constantly reminded by my job and it's my duty as a daughter to make sure I know what my parents want when they die. Finally, I ask my mom if she has one. She doesn't! She's a hospice nurse and she doesn't have a living will! Oh man. This worries me. I expected my Dad not to have one, because he avoids the topic as much as he can, but my mom?

Every time my mother weezes from her damaged lungs (second hand smoke from her parents), every time she has to stop walking outside because the humidity makes her short of breath, every time she asks us to stop making her laugh because it's hard for her to breath, I wonder "when will it be too much" She has told me in person what she wants, but I have two sisters who weren't there when she said it. She needs to write it down.

___

I have been thinking about my friends and families earthy exits to the point that I need a break from thinking in general. I force myself not to think about it and instead my mind wanders to myself.

I'm 30 and single. I have never told anybody what I want to happen. I have a list of people living all over the country that need to be informed, but who is to know how to contact them? I've considered making a list and putting on my computer of what to do in the event of my death. It makes me feel a little off, though. How do you call up your friends and say, "If I die will you make sure this happens? Oh, and do you want to go out Friday night?"
__

So, I've become obsessesed with thoughts of death. How people might die, what will happen when they do and how they will notify the right people. I'm glad that I haven't ignored this topic until my death bed, but at the same time I'd like to think about something else for a while. Like shoes, or chocolate or boys.

Some good has come out of all this talk of death. I do know what song my mom wants played at her funeral.. in fact she wants a mix cd illustrating the times of her life musically. It made me smile to know this about my mother.

Walking in

2006-07-27T18:16:00.000-05:00

As I was riding up to the North Woods, my sister turns and says to me, "So, how's it going with hospice? Is it hard?" I looked at her and thought amused "Don't you read my blog? It's all in there." but instead answered her questions as completely as I could. She seemed interested in the answers, but she kept shaking her head in wonderment. "It's just that of all of us... I never imagined you working for hospice." It's at this point I ask her why she hasn't been reading my blog...

She was right. I'm the last person anyone would have expected to be doing this out of the three of us. I have been afraid of nursing homes all my life. My mother had worked in them for as long as I could remember. She liked working in nursing homes with the residents. All I saw was smelly, crazies in wheelchairs who mumbled things at you when you walked by. I couldn't stand to walk into any of the places and always thought my mother a better, stronger person because she could.

That feeling hadn't changed when I joined the hospice team. I knew with hospice that I would spend a lot of time in the client's home, so I thought that I would be able to handle it. I didn't realize how much time I would be spending in nursing homes. My attitude towards the homes has changed since I was young. I no longer see them as awful places, but I still don't like going in.

I almost always drive slower when I'm on my way to the home, and almost always have the urge to call in sick as I walk up to the door. I keep telling myself why I am there as I open the door and make my way to the residents room. Once I am there, everything is fine. I'm not scared of the "old people" so much anymore.

This job isn't easy for me. Every part of it is a challenge. Overcoming fears and misconceptions and honing my massage skills, not to mention dealing with exacting medical standards of the hospital. This is one of those jobs I know is good for me, and I already know that I'm a better massage therapist because of it.

I hope one day the job will become easier, but I'm not holding out any hope for me getting over that initial walking into a nursing home.

Favorites

2006-07-19T22:39:00.000-05:00

My sisters both accuse me of being my father's favorite child. (How is this a fault of mine, I don't know. This seems to be a choice he would have made, not me.) I never tried to be a favorite, and I honestly don't think my father had one. I do seem to remember being a favorite of various teachers throughout school, and I don't remember doing anything to achieve that status, except maybe doing the homework on time.

I think it's interesting that 'being favored' had such negative feelings attached to it. There was something wrong with it or it was the favored persons fault, and not the favorer. Which is why I vowed at age 10 to never to have any type favorite. I would be fair minded and see everything for it's individual beauty and value.

Why then, do I keep having favorites among my hospice clients. I suppose it's just as it was when I was young, I didn't try to like one person more than the other, I just did. I didn't want to have favorites, or to really like my hospice clients because I didn't want it to be too hard for me when the died. The truth of the matter is, I am helping to take care of someone at a very intimate time in their life. They are preparing for the end of it and to some that means embracing everyone around them, including me. For others it means, shutting out everyone one who is not essential...like me. How could I not embrace back those who share their last moments with me. Is it so wrong to briefly love a near stranger back at time so short and dear to them?

One of my first favorites, J., always brought a smile to my face with the way his eyes lit up when he saw me. Another was always concerned with me working too hard, and another held me close and told me I was his guardian angel mere days before he died.

There is a fluidity to these favorites, one passes away and another client starts to warm up to me, or we have a moment that gives us that moment of understanding. I don't choose them, they choose me I think.

Is really a favorite, or some sort of intimacy that breaks down our decades of protective walls and borders. The time of those walls has passed for the dying and being let in can feel like you've been favored, chosen, or become a friend of sorts.

I hope I can honor that giving of spirit that those certain clients feel they can share with me, and I will think of them as favorites, without shame.

With the slightest of touch...

2006-07-12T15:32:00.000-05:00

Merely a month or so after I started working for hospice, I had my first "what I am I doing here" visit. The gentleman I was to see that day lived out in the country, past a lake, curving around the fields, and down a long gravel driveway. It took me close to 40 minutes to get there from town. I was always nervous visiting him because the first time I was supposed to see him I was two hours late.

Arriving that late was certainly a blow to my confidence, but it wasn't really my fault. The directions I received were atrocious, he lived out in the middle of nowhere, my cell phone didn't get any reception to call for directions, and it was winter so the roads weren't that great either... None the less, I felt a certain amount of guilt showing up that late, and I never quite shook it everytime I drove out there.

A few weeks into the visits, C. told me he wasn't feeling that great ever since he fell the day before. {REDFLAG} "fell, when and how did you fall..." {I tell myself not to freak out, but I am not a nurse and I know this is a serious thing. These are the kind of things that we are supposed to look for and try to prevent. This man was in his 70's and living by himself on a farm in the middle of nowhere. } He continues to tell me what happened and do what I'm supposed to do, call the office. The nurse that answered was in a meeting and told me to help him make an appointment to see his dr. So that's what I did. The appointment was made for the next day and a ride arranged. I finished with my visit and left.

The next week, his daughter had come to stay with him and stood and stared at me the whole time I worked with her father. It wasn't that she didn't trust me, but more that she didn't know what I was there for at first. C. Complained of neck pain and wanted me to work it harder. I knew I wasn't supposed work deeply with the elderly, so I did my best to make his neck feel better with out using too much pressure... but I started to doubt. This woman was watching every move I made, I still wasn't sure I did the right thing about the fall, and I still felt like I had screwed up with this gentleman from day 1.

All my fears were realized the next day when I was called by the director of the Hospice department. "C. has a hairline fracture in his neck. What happened with him at your visit" {ALARM! What! I worked on a man with a broken neck! Or worse, I'm the one who broke it! Oh god o God o GOD}

"Well, I massaged his shoulders..." I told her about the visit and I told her what I did after he reported the fall and that the nurse had told me to do. " I see. I will have to talk to the Dr and the Nurse about this further, but I don't think you should see him until further notice" {Oh god oh god oh god}

I lived in panic for two days. My mother, a hospice nurse, told me I did nothing wrong, and that it was most likely a pathological fracture (a break that just occurs on it's own due to illness. Often happens when cancer reaches the bones)..

..but still... what the hell was I doing here.

The reports came back and it was show it was not my fault. It was like my mother said. I did everything right (mostly). I should have gotten him to the dr sooner, but I was following the nurses direction (as I am supposed to) and the fracture was due to the cancer reaching his bones, which we were unaware of a the time. I was given advice on how to massage in that situation and continued on with my job.

That situation was very freakish. I think had I not doubted myself from the very beginning, I would have made better decisions, but that's only conjecture. I have found that you usually don't have clue what you would do in any traumatic situation until it actually occurs.

It gives me the shivers sometimes to think about how I thought I had broken a mans neck with the slightest of touch, but in the end, it was a part of my education. The kind you only get by doing and that can never be learned completely by reading it in a book or blog or what have you.

The Power of Perception

2006-07-07T13:44:00.000-05:00

M. has cancer. They almost all have cancer of some sort. She had just gotten back from a long stay at the hospital and she and her family had decided to stop all treatment and enter hospice. She was weak, she could barely walk. She used a walker to get a around her condo in a house coat, because it took a lot of energy to get dressed, so she saved her energy and only got dressed when she needed to.

I started working with her legs and feet intially because she didn't like that they had gotten swollen with her long stay in the hospital. I told her I would do what I could, knowing full well that the swelling in the legs is a hard thing to reduce at this stage.

Two to three weeks later, the swelling in her legs and feet had noticably gone down and she thanked me. I was frankly surprised, but I knew massage could help, so accepted the thanks gracefully. A few weeks later, M. was walking around with out her walker and only usuing the furniture for support when needed. She was energtic and feeling very well, not to mentioned dressed when I arrived. She attributed this renewed energy and ability to walk to the massage. I smiled and thanked her for her confidence in me, but assured her it was her hard work that brought her to this point, not just the massage.

After a couple months I notice M. is out visiting friends more often and leading an active live. It wouldn't seem that she was part of a hospice program. At the end of the 6 months I arrive for a visit and M. is beaming. "I've got some good news and some bad news!" she says. "I just heard from the doctor, my cancer is in remission!" This is great news. It is rare that I get to see a client get better. "The bad news is, I won't be in hospice anymore, so I won't be able to get your massages! I know that it was your massages that helped turn things around!"

I thought about that. Of course I told her that massage wasn't the only thing that was working in her favor, but later I got to thinking about people perceptions. I thought about all those placebo tests and 'postive thinking'. This woman feels strongly that my work helped to heal her, at least into a remission. I know this is not biologically possible for massage on it's own to stop a cancer growth.. but her perception is different.

It got me to thinking about how other things in life don't really work if you don't believe in them either. I'm starting to wonder how much the medicine, therapy, doctors visits, etc play a role in healing and how much of it is your brain or just luck. Either way, M. is living up the days she has been granted and thanking me for the oppertunity.

The polite thing to do would be say "Your Welcome" so.. "Your welcome, M. I did my best and was happy to help you."

Small Towns and Childhood Mysteries

2006-07-07T13:31:00.000-05:00

Two thoughts:

My first private client in this town died yesterday. I am glad. E. was in terrible pain even though we did what we (hospice) could to help her. Curiously, besides the day I was stuck to near tears by working with her, I am handling like I handle the deaths of my other clients. I think that is probably good.

Besides, a new patient was added to my roster. His wife is one of my clients. I guess I've lived here long enough where this is going to start happening more regularly.

*******

I guess growing up I heard the word cancer and never new what it meant. I knew that it meant you were eventually going to die. I knew that it usually started in one area and sometimes went someplace else. It was so mysterious and the implied meaning that it was terrible way to die was only explained by the sigh, nods and silence after someone said the word.

I know a lot more about cancer now. I know about the cellular process involved in mutations and 'mets' and some other biology stuff. Knowing that stuff doesn't really help though... All it tells you is what happened. It doesn't tell you 'about' it.

What I've learned from hospice is that cancer is painful, and the treatment the clients received before entering hospice were as bad as the disease. That people can live with this pain for years or they wake up one day after living in what they thought was a reasonably healthy body with a stomach ache and find that their body is riddled with cancer and subsequently die a week later.

How do you prepare people for that? You could live 5 more years or a week? There's not any way to know, really.

Some people just never wake up.

2006-07-06T18:21:00.000-05:00

Yesterday, my cousin died. This is the first family death after starting work with hospice.

Of course the situation is completely different than a hospice related death. My cousin died suddenly for no appearant cause. My uncle is guessing sleep apniea, but I don't think they know for sure. The way I recieved the news was a bit of shock as well, because I haven't spoken to my uncle in two years, and that was at funeral of my grandmother, so there wasn't really 'talking' going on then, either. I didn't know who it was when he called.

I get calls telling me that someone died all the time. I got one this morning in fact. It's kind of like getting call that says, you can come in late to work today. It sounds odd and cold, and while your sad, you also know that your visit schedule has just changed and you need to make adjustments.

So when I took the call about his death, my first reaction was to make a note of it and say "okay, thanks for letting me know". It took me a second to realized this was more than that and then I completely flustered. I remembered to ask when the services were, but not where. And I didn't even think about getting a phone number encase there was questions.

I'm strangely sad and not sad about the situation. I can't say that I was close to my cousin, but that shouldn't matter. Maybe working with hospice has given me tools to handle personal dealths as well as those related to my profession. Maybe I'm cold and heartless... but I doubt it.

The Audience

2006-07-03T15:14:00.000-05:00

When I walked into E's home, it was filled with children. Her eldest daughter was there with E's grandchildren and they were preparing their lunch of brats and potato chips. I smiled and walked around the scooter that was deposited on the floor and headed back to E's room.

E was sleeping through my work with her today, so I didn't get to talk to her very much. I like to talk to the clients while I'm there and learn a little bit about their history. I find that it usually is a good distraction for them, and it sometimes ends in laughter, which we all know is the best medicine.

I was having a little bit of a frustrating day today and was disappointed that she wasn't able to respond, but I tried not to let the time be about me, and stay focused on her care. As I was working I heard the mother say to the children, "why don't you go in with the massage therapist and watch her" My first thought was "are you kidding! I'm trying to work in here!" and then I heard the mother say "she can show you how to give grandma a massage"

Before I let myself feel inconvenienced or grumpy about it, I told myself. "This is why you are here! Do your job!" So I welcomed the five children into the room and showed them what I was doing. I encouraged them to give their grandma a massage and for them just to remember to be gentle and reminded them that it would feel really good. I told them to practice on each other"

I hope that I accomplished two things today. I hope that I gave these children a way to connect to their grandmother in the time that she has left. I hope that I helped them realized that you don't have to be afraid of touching a dying person. They are so young and this is the time when these ideas about life and death start to form. I hope I helped these children as much I am trying to help E.

Second, I hope that I helped the field of massage therapy. I wished I had been more prepared today to teach the children today. I want my community to know about the therapeutic affects of massage and the uses of it outside a spa. I think introducing this to the grandchildren could possibly change or form their views on the craft, which will change the future of massage.

It is a huge struggle for MT to be funded for hospice these days. I'm lucky that I actually get paid. Most hospices rely on volunteers, if they use MT at all.

It doesn't feel like a big day today. It feels like a long tired one. It feels like I didn't accomplish much, but maybe I did. Hopefully writing things like this down will help my realize the affect this work has on me and the world around me.

Frustration

2006-07-03T09:18:00.000-05:00

I'm feeling very frustrated today. It having very little to do with the clients themselves, but the whole atmosphere of job. I am fairly sure that everyone runs into bureaucratic nonsense of being employed. Then why write about it? I guess because there is the added part where you are taking care of people, and their impending death is not waiting for you to figure out your vacation schedule.

I'm feeling frustrated because I wanted 1 day off, just 1. Just like everybody else gets. Well I got that day off, but I had to reschedule all my visits for that week on different days of the same week. I couldn't just not see them that week. Sounds reasonable, except I have three jobs, and few of these clients live close together. Well, I figure it out, but I screwed up, and had to redo it... but when I re-did it I forgot to tell the office and clients that I had changed it, so the client was expecting on the original day, the office was expecting me on the first rescheduled day and I showed up on the 2nd rescheduled day. Sigh.

This job is difficult enough as it is, and now I'm having trouble keeping track of what day it is. I'm so tired and it was so much work just to take one day off that I'm not sure that it will be worth it in the future.

Surprises

2006-06-27T16:38:00.000-05:00

One of the perks of working in hospice is that I get to be outside a lot. I drive from home to nursing home within a 30 mile radius of the hospital. There is a lot of open space out here amongst the fields of corn and soybeans, yet each turn can sometimes surprise you.

I think of this part of the country as generally flat, but there are some hills and curves to the roads. While taking that sharp left curve I'm stilled awed by the spread of gleaming white wind turbines (windmills to the more romantic of us) that pop out of the earth. They look like they were planted there. A beanstalk to jack's world in the clouds, only this time on the wind. I want to paint them, but I think they might lose some of their glory.

Surprises at every turn, when you think you can see for miles.

I almost cried today. It surprised me. I have been working with hospice for 6-7 months and I have felt very little emotional tugs on the tear ducts. (I wondered about that, too, but that's another entry). I couldn't pin down what made today different. I was listening to an achingly sad song on the radio... and maybe that's what spurred it... but I don't know. I think it's because for the first time, I have a connection to one of the clients.

I moved here 15 months ago knowing only my uncle and my parents. I had never lived here before, my parents moved here when I was in college. When I was first starting my massage business, a coworker of my mother's (P) bought a gift certificate for her mother, E. It was kind of like when I was in Girl Scouts and your mom brings the cookie order form to work with her and passes it around to all the other employees. I was grateful, she would be my very first client.

After that first time, I didn't see her again, though I did get to know her daughter a little bit. Her daughter is a hospice nurse with my mother... and now I work with P. I didn't know what to expect when I got the notifications that P's mother, E, would be receiving hospices services. I don't feel like I really know this family, but my mother has worked with P for many years and considers her a friend, and E. was my very first client in the town. How could not feel somewhat connected.

E. is dying from breast cancer and it is extremely painful. She has two types of morphine to control the pain, and it still doesn't get it all. Holding her hand before I start, I watch the grimace on her face as she asks me "Why does it have to hurt this much?"

All I can do is my job, which is report her pain to the RN and assess the tolerance of massage. I try to work with her hands and feet to relax her and hopefully reducing some of her pain. This is why I am here, to reduce her pain enough that she doesn't have to be completely out due to pain meds. To help her make the most of the time she has left.

So after a couple of visits like this, I almost cried while tearing over country roads towards the stateline listening to Aimee Mann tell me, "It's not going to stop... 'till you wise up"

Not so surprising after all...

But they're dying

2006-06-26T15:55:00.000-05:00

J. is, in truth, a dirty old man. For 72, he still knows how to harrass the help in the most obnoxious ways. He isn't one of my clients, just someone I met recently.

Living in a small town, I've learned there are somethings you can't change. One is the curiosity of what you do with your time. I think people can't imagine anything thing exciting going on, so they need to verify with others, by finding out what exactly they do with their time.

So, when he asks me about massage therapy practice, I tell him I work with hospice

"Hospice?" he says "isn't that.."
"Yes, usually 6 months or less" I say

the jokester glint left his eyes

"that's kind of scary!" he says as he takes a step back. I notice the change in his normally jubilant attitude

"How do you mean?"

"Well, knowing that they are going die!"

"oh, it's not that bad. I know what I'm getting into when I arrive, so I'm prepared"

"But, they are dying!" he shudders

I was shocked at first at this reaction by a 72 year old man with his share of medical issues. I felt a little vidicated that I, "a girl" ,in his eyes, could face something he could not... at the same time I realized that in all those 72 years of his, he most likey has not faced death as a reality in his life as often as I had assumed he had... just because he was old.

I put in check my haughtiness, may pride and my later pity.. This is most of us. We don't think about death the way we should. We are taught to be afraid of it so we will pay our insurance premiums without question.

I was reading about the death of a fellow bloggers friend, and something she said clicked for me, especially dealing with hospice. This person (that was dying) stated that death was part of life and talking about death and accepting death in that manner was not letting go of life, but encompassing the whole of life.

We search for something that completes us, be it a partner, a job, a house. and find ourselves unhappy, or yet unfullfilled. We search and search for that piece of life that we are missing. What if that piece was in essence the absence of life itself. Not as something morbid or frightning... but as night is to day. How much brighter our day becomes after the darkness of night. When we can not be afraid of death, and love it as part of our being, perhaps then we can love our life. Perhaps.

The High Jump Jiggled my Brain

2006-06-21T22:41:00.000-05:00

I wonder when i get old if I'll suffer from denmtia. I've met several people who are all suffering different forms of it, and it seems so different for each of them.

I was in my Team Meeting today talking about the status of our clients when they came around to talking about M. She has been living in the Nursing home for some time now. "Oh she thinks she has to pick people up and drive them, home!" One nurse says with a sad face. They all nod and continue to talk about her care.

When it gets to my turn, I agree that often she starts talking about how there are places she has to go, and isn't her husband so good hearted to let her have the car for three weeks. Everyone in the room knows her husband is dead, so they look sorrowful at this bit of news.

"But" I say "i try to get her to talk about herself and distract her." I started telling them about how M. didn't want my services at first because she didn't have any money to pay me. I convinced her that she didn't have to give me any money, and she readily accepted, though she couldn't understand why anyone would go around rubbing people's feet for free. She told me about how she got her first vericose vein in highschool doing the high jump and the long jump. She one $14 in 8th grade because she was able to jump the highest. "I could have gone, higher" she said. I asked her if she liked all that jumping around and she said she probably like it too much and it jiggled up her brain.

I had the room laughing and the nurses that hadn't met her, wanted to meet her. I felt like I had something special with M. I had made a connection with her and her jiggled up brain. This is where the hard part of my job starts to show up. I know that with in weeks or months, M. will get worse and that breif connection we had will be lost. Do I distance myself from it or relish it while it is still there. I've only known her a short time, who am I to hold on to this part of a stranger?

For now, I will continue to joke with M. and not think about the end until it's closer. But then I will have to put my attachment to the side and see the situation as part of my job.

Talking to yourself

2006-06-20T09:11:00.000-05:00

This morning I was all set to complain about work. The endless red tape and nonesense that's involved with committees and board members. This is an aspect that i don't like about my job. The very real behind the scenes busy work of it all. Documentation of every single word that is said to every person and the look on their face when you told them. It is tedious to say the least. But I am not going to complain any more about my job today.

****

Today I went to see E. She is about half an hour away in a small town nursing home. I've been seeing her longer than six months, and we all keep waiting for the call to say that she has died... but she hasn't yet.

She is difficult for me to work with because her disease causes her to hold her arms stiffly at her sides. She doesn't talk, though she will follow you with her head. I'm not sure if she understands what I say to her or not. I am afraid I am going to break her arm if I force her to move it. When I first started seeing her, I tried to move her around a bit, but the look she gave me stopped me in my tracks. Whenever I announce my arrival her eyes open wide and her chin shrinks back into her neck. It is a cross between a look of disgust and dismay. As if to say "oh no! She's back! If only I could speak so I could tell her to go away!"

I don't know if she's thinking that or not. I didn't really feel confident with what I was doing with her. So much of my work is based on feed back and with E. I couldn't tell if it was negative feedback or her disease causing her resist me.

Frankly, I don't think I'm doing her much good and I don't know why she makes me so nervous.

I arrived one day and the RN from hospice was still there taking down her vital signs. I sat and waited and watched while she finished up. The nurse wasn't nervous or shy or unsure about herself. She treated E. as if she could understand her, because she didn't know either, and it was better to err on the side of yes. As I watched her, I realized I was making it hard on myself. It wasn't E. being difficult, it was me being afraid of what I didn't know. I didn't know what was happening, so I did nothing, or the bear minimum.

It took my a couple of visits to get over myself. Today I think I made a big step. I talked to her about a lot of things and told her what I was doing with her therapy. Her body wasn't any easier to work with, but I felt at least like I was doing the best that I knew how.

Demons and Delusions

2006-06-19T12:28:00.000-05:00

The first time I went in to see I. she almost refused my service. She didn't need a massage. She had better things to do. She was upset with her doctor in fact. She was mad because she had been complaining about this pain in her jaw for months and just now they told her that she had cancer in her jaw and that it was terminal. Maybe she should change doctors and get a second opinion. I convinced her that since massage was included in her hospice care that she should accept my services.

Soon, she looked forward to my visits, though she could never remember when they were supposed to be. Often she would complain. She would complain about the care she was getting (which wasn't bad), she would complain about getting too many visitors, she would complain about not getting enough visits from her son, or that her hair looked a mess!

She always had something to complain about and was really a difficult and hard to manage patient, but I liked her anyways. We talked a lot about things that made us happy. She was so proud of her children and thought they were beautiful. Angel food cake was her very favorite and she became almost giddy when someone brought her a piece. Often she asked if I could stay for tea and have some cake with her.

After a few months she started forget more than what time my visits were supposed to be (which were around the same time every week) and then she started to nod off before I arrived. Then she would still be in bed when I arrived and though she was embarrassed that she hadn't gotten out of bed yet, even though she was too weak to do so. I wasn't too concerned about her because I knew this was going to happen at some point.

But then... then she started looking forward to my visits. Not because I was going to give a massage, but because it was me that was visiting. She seemed so relieved that I came I realized that there was something more to it than I had thought. Maybe it was because I was someone she recognized when she had begun to forget, or maybe because I reminded her of her daughter and we had similar names and haircuts.

I came in around my usual time and knocked on the door. "I., it's me, the massage therapist from hospice." She opened her eyes and looked and after a minute registered that someone was there. I sat down and took her hand and looked into her eyes. Her face was thin, about a third of the size it had been when I first met her. Her jaw on the right side was huge in comparison, but that was where the cancer originated. She opened her eyes as I took her hand. I could tell that she recognized me, but wasn't quite sure who I was. "it's me, the massage therapist from hospice" I say again.

"Oh" she said. She looked away for a second and then open her eyes again. She looked at me closely, but didn't say anything more.
"I'm here to give you a massage" I reply, as I always do, because I'm never sure how much my clients will remember, even if I've been seeing them every week for months on end.
She looks at me again and says :I'm don't know"
"what don't you know, Irene?" I ask.
"I don't know what I"m supposed to do" she says.
"You don't need to anything, you just lie here and relax while I massage your hands like we did last time" I reply with my standard response.
"I don't know what to so she says' as she pulls me towards her closer. She wants to tell me something. Something important, I can tell.
"I don't know what to do, but I can trust you, you won't try to do it"
"What is it, Irene, that I won't try to do?
She pulls my arm and thusly my ear closer to her and I lean in to hear her.
"I'm afraid" she says
"what is it that you're afraid of?" I ask. I expect an answer about her upcoming death. She has brought this up before. "what will it feel like?" "how will I know?" I didn't have the answer then, as I didn't now. I'd never been near death, or felt I was dying before. I had no clue. I didn't know what she needed to hear.
"I think they are trying to kill me" she says while clutching my hand and pleading to me with her eyes to save her from her cancer that has spread from her jaw to her brain and caused her to believe that her impending death is being orchestrated by her caregivers and not by her disease.

I tell her she is safe with me and not to worry and she relaxes a bit and nods off to sleep.

The Beginning

2006-06-19T09:15:00.000-05:00

At 30 years old, I found myself in a place I swore I would never go. I was NOT going to be a caregiver. I was not going to be a nurse, I was not going to work with the elderly, I was not going to deal with death, dying, or the stress of it all. My mother has worked in Nursing homes since she left nursing school 35 years ago and I grew up with the stories and the smells of it.

I went to art school. I'm not to shabby with a camera or a paintbrush. I worked in graphic design and hated it. Loathed it in fact.
So much so that when the cultural revolution of the clinton years ended any everyone with no real talent was laid off (including myself) I took the sage advice of my inner loathing and changed careers to massage therapy.

While techinally this is a caregiving career, it had nothing to do with what I had feared since childhood: death.

As, you may have figured though the interweaving of the fates I have found myself working as a massage therapist at the hospice department of the local hospital. Not only are my clients elderly, and diseased and dying... they have less than six months to live.

A writer friend of mine insisted that I write about my expiereces for my own edification and for others enjoyment. So I thought I would try it. Be warned. I have trouble spelling many words, but it isn't for lack of trying.