Car Show.

A few weeks ago my fiance and I were invited to bring our 1965 Corvair to an Assisted Living Facility in West Seattle. Apparently, they throw a barbecue every year for their residents, residents' families, and neighbors of the facility. This year they were including a classic car show and inviting an Elvis impersonator to sing and perform. We agreed to do it gladly because it seemed the perfect mix of our classic car interests and my work with dementia and hospice. I pictured a little gathering at a mid size facility, maybe five or ten cars, and a few barbecues. I couldn't have been more wrong!

The facility was huge, one of the biggest I've seen, encompassing those who could still live independently, those who needed secure facilities, and nursing facilities. It was obvious they'd done this before, the set-up was huge: rows of chairs placed in the garden, some already occupied by residents; several tables packed with food trays and bowls, with huge barbecues behind them; and a full sound system! I would estimate that there were twenty to thirty classic cars, and easily more than a hundred people. It was something!

We enjoyed being out in the sun, and eating the fried chicken and cobbler with vanilla ice cream. We even enjoyed Elvis' performance-he was pretty good! But what we really enjoyed was chatting with all the elderly residents and their families as they viewed and exclaimed over our car. It seems like back in the sixties and seventies, everyone either had a Corvair or knew someone who did, and it was so fun to see our little car take these friendly people back to their child-or young adulthood, reminiscing about THEIR cars and their lives.

Everyone has a story, especially about cars they have had, and most people don't need much encouragement to tell them! It was so gratifying to see the older gentlemen come shuffling slowly by, aided by caregivers, watching their eyes light up to see our car and the other classics lined up. I loved watching families take care of their loved ones, and caregivers gently encourage residents to dance or sing along. I can't think of a better way to spend a sunny Summer afternoon, and it almost made me wish my Father was a resident here so he could share it with us.

Belief System.

I may have mentioned in past postings that my father was a Christian Scientist. In that particular faith, it is believed that the material body is a reflection of the perfection of God, and that any illness or injury can be conquered, completely cured, by prayer and/or right belief in this fact. Followers pray and read passages from the Bible and other publications written by the religion's founder. When a member becomes ill, their illness is tacitly ignored and denied, although they may still receive offers of help with driving and chores. Even death is acknowledged only obliquely and funeral services are never held in the Church. No one acknowledges that the body is physical and has needs and dysfunctions. I was raised in this faith, but came to believe that it was almost cult-like in its beliefs and was incredibly damaging and delusional.Unfortunately, its effects had already been felt in my own health and well-being.

My Dad continued to believe, praying and reading right up to the point that the words were stolen out of his mind by dementia. I'm sure he felt deeply that whatever was affecting him could be conquered if he just believed it hard enough. Unfortunately, it didn't work that way; in fact, it led to him obstructing us in every possible way, denying he had a problem, needed help, or was in danger. Members of my Dad's Church helped him in his denial, refusing to acknowledge that they saw any strange or potentially dangerous behavior from him, although I'm sure they did. To these people, physical problems, even death, are negative beliefs that just haven't been fixed yet.

Although I disagree strongly with his beliefs, I have tried as hard as I could to ensure I follow them on his behalf as closely as I can; not filling him full of drugs, limiting visits to doctors, and limiting medical intervention.

The other day an old friend from Dad's Church called to check in on him, since he hadn't been to Church in quite a while. I receive these calls periodically, from people that I have known since I was very little. They are all lovely, kind people, but not one of them actually believes that there is anything wrong with Dad, which makes discussing his illness both strange and uncomfortable. Knowing there's no point in saying much, I try to be honest about how my Dad really is, while at the same time, knowing they are mentally denying every word I say.

In the end, I try to be polite, giving them few details beyond that my Dad continues well and happy where he's living. While I appreciate their kindness and their concern for my Father, I dislike these calls. They are able to hang up the phone feeling good for having checked in and happy that they can continue to fit my Father into their beliefs of the world. It tends to bring up bad memories of my time in the Church and my time being ill. I wish I could stop all connection with this harmful faith and its dysfunctional followers, but until my Father dies that won't happen. In the end I'm left with their refusal of the truth, feeling conflicted and uncomforted, knowing that there has been no real connection made, and that I must continue to participate in the denial.

Wedding.

Well, my fiance and I are getting closer and closer to our wedding. Little details are being decided on, information being sent back and forth between us and the hotel where we are going to be married. I've had a dress fitting and we've found what my fiance is going to wear. Flight arrangements have been made and hotel rooms reserved. We're planning a very small, intimate wedding in a lovely tropical location, and I cannot wait; but it strikes me that absolutely no one from my blood family will be there with me.

For the most part, that's okay. The couple I have coming are like family to me and have been there for me through some of the hardest things I've faced in my life, including caring for Dad. And, of course, my fiance has become my family. Dad was present for my first wedding, a big traditional family affair where dad wore a tux(he looked great!) and walked me down the aisle. My mother died long before my wedding, so I've never gotten the delight of having a mother to plan a wedding with.

But still, Dad will not be attending-does not, in fact, even realize I'm getting married, and I'm mostly okay with that. When we got engaged, we visited Dad and told him, sitting on either side of him on the couch, my fiance's face engaging his attention. The other day when I visited Dad, I told him again, and while he didn't really understand, I did get a "well, that's just great." from him. The nicest thing, though, was when we took him for a ride in our car. As we were leaving, my fiance shook his hand, looked him right in the eye and told him that we were getting married, that he loved me, and that he was planning to take good care of me for the rest of our lives. Dad looked right at him, right into his eyes, and my fiance swears that he saw a glimmer of comprehension. It certainly brought a tear to my eye to see the two of them together; my fiance, tall and bright with life and my father, stooped and a little frail.

So, at least he knows. My fiance gave my dad the manly courtesy of a handshake and straight-talking, a kindness of heart that is partly why I love him. If he was ever worried about me, hopefully he knows in some corner of his mind that I will be okay. And as we stand together and speak our vows, Dad will be thousands of miles away, quietly wandering through his own mind. I will be happy and grateful at my good luck and fortune, but I will also be a little sad at that moment that neither of my parents are there.

"People talk about the death of a child as the worst thing that can happen," Flora said. "And it is. It is the worst thing. But the death of a parent is a loss of self. A loss of history. Who else really remembers your childhood but your parents? It's like you said about the divorce, that it was as if your history had been erased..." excerpted from 'Perfect Reader'-Maggie Pouncey

I read this the other day in a recent, and very good, book. I thought it was one of the most apt descriptions of what happens when one's parent dies. I experienced this to a certain degree when my mother died when I was 19. I still had my father, of course, but it was my mother who had taken care of me, nursed me through illness, known more about me than any other person alive. As sad as I was, it gave me some comfort to know that some part of my childhood, my child-map, remained in my father's mind. And then he began to lose that mind.

My father isn't dead yet, of course, but my child-map is now gone from him, and therefore, from me. There is no one left who remembers my history, my story, as well as a parent would. Over time, my mother told me many stories about myself as a child, but it's never enough, and some of the details have faded over time. I can only look at pictures and a few of the things my mother wrote down and remember what I can. I am, to all intents and purposes, an orphan, as I have written before. I go visit my father now and I talk to him about events and our lives and times together, but usually there is no real response. I got as many memories out of him as I could in the time he was lucid, there is now nor more time.

In essence, there are no more layers between me and old age and death. One's parents are that barrier, that illusion that we will remain ageless and alive. When those parents are gone, there are no more illusions-it will be our time next. This is a strange feeling, but I've had time to become accustomed to it by now. I don't think I will ever be accustomed, however, to the loss of my child-map, that secret history of myself that only my mother and father could know.

Bereavement.

I've been doing hospice work for over a year now, and I still really enjoy it. It can be hard work, sometimes a little overwhelming, but it's still rewarding. I have a patient now that I've been seeing for a few months and we're really enjoying each other. My patient is 94 and still sharp as a tack. I enjoyed hospice so much that I volunteered to with the Bereavement group.

Bereavement with my organization manifests in two different ways. One group sends out supportive and informative mailings all year to those whose loved one has gone through hospice. The other group, which I belong to, interacts directly with the loved ones of the deceased. We will contact anyone involved directly after a loss if asked to by the hospice nurse; we also set a schedule to call the family or friends one month and three months after the loss.

Sometimes family members are taken aback or a little unsure about why I'm calling, but after I explain my purpose, they quite often take the opportunity to open up to someone they don't know and who they don't have to protect or care for, and it can often be an extremely valuable conversation, for both of us. I've been doing this now for about three months. Today I logged in to the system and perused the charts of the families I had on my list to call. I started with the first patient, looking up how many family members there were, who they were, and their contact info.

I don't know why, but all of a sudden, it occurred to me that someday, perhaps very soon, someone would be doing this for my family. Someone in a hospice program would be accessing my father's information and determining I and my sister were the family members, and preparing themselves to give me a call. I don't know why this hadn't occurred to me before, but my heart literally dropped as soon as it did, and I felt suddenly so sad.

I tend to think of Dad as just living on, being around somewhere, getting worse little by little, but always there when I visit. However, fairly soon this won't be the case, and I'll definitely be enrolling him in the hospice program, and after that, he will die.
And it will be me being comforted by the hospice and bereavement volunteers.

Telling the Story.

I've just gotten back from a week long trip to upstate New York to visit my fiance's family. (Hence no blog posts!) His sister, brother-in-law, niece, and nephew were the last members of the family I hadn't met yet, although I've spoken to them on the phone. They are all lovely, and it was fun to actually meet them face to face and see the home they've lived in for fourteen years or so.

Once again, however, I found myself faced with telling them about myself, my life, and, of course, my father, since he and his situation are so intimately tied up with MY life. They knew something about Dad's illness and our history, but were understandably curious about the details. So, I found myself launching once again into the, by now, short and well-organized version of events. I'm amazed at how succinct and organized seven or eight years have become! It never really gets easier to tell over, and over.

It's still hard, though, even so long after many of the big events, to talk about. It's also hard when they inevitably ask whether Dad recognized me or not. He doesn't really, and that's about the worse thing that people can imagine. She asked about Dad's health care and how easy it was to follow his religious beliefs. She asked about his living situation, and how long I thought it would be before he really started to fail. My fiance's sister was very sympathetic, while still being curious about a situation she'd never been in-one I hope she's never in, but that might just be wishful thinking.

It's just that I always forget that people I've never met who know about our story, will always want to know the specifics and current details-and that truly never gets easier to talk about.

Proprioception.

Dad is so stiff now, I've noticed. He sits almost bolt upright, turning his head only a little to look at what's on either side of him. He walks very slowly now, feeling each step; barely even lifting his feet at all, actually. The doctor thinks the nerve signals from his feet to his brain that tell him how to walk and whether there's solid ground under his feet are fading. He was never the most graceful and easy-moving of men; in fact, I can remember several crashes while skiing and a lot of awkward hugs, but he was athletic and strong, and I know he appreciated that. I remember running alongside him, when I could still run, for miles, and I remember the joy he took in bombing down mogul hills in the snow.

When my fiance and I took him for a ride in our Corvair, I noticed then, too, how hard it was to bend him to get him to sit in the seat, and how his body hardly moved going around corners, only stiffly swaying from side to side. I don't know if its the Lewy-Body or what, but I think his entire body's proprioception is no longer working.

Proprioception, as I understand it, is the term for how the muscles and ligaments of our limbs move and are aware of themselves in space and in relation to other limbs. His muscles are so stiff now, and seem as lost as he is, in a way. He reacts stiffly to everything, to every movement. The other day when I visited, I watched him sitting bolt upright in a lounge chair, unable or unwilling to relax, to slump a little. I see the elderly in a lot of facilities slumped down in their chairs, a victim of gravity. It seems my father has gone the other way, but I still feel sad to watch him, hardly moving, because I still see underneath the man with the powerful arms, breaststroking for miles down the lake.