Knocking On Unknown Doors

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.

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

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

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

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

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

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.