Saying Hello to Strangers

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.

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

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

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...

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

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

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.