Diagnosis

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

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

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

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

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

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

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.