WHO KNOWS WHERE THE TIME GOES?

 

 

I'm sorry to have left this blog, like an orphan left by the roadside, while the armies of the people march by. I just don't really know what happens to my time. Eaten up, by often insignificant issues. But there we are  -- i'm sorry for my lack. Energy  -- discipline  -- attention span. Whatever. 

I find myself struggling a lot with the inner sense i have of what dementia means or does or how it happens upon someone and changes them and how it is that see that person, changed and very interesting. While others see that person as gone. I have less and less patience for the attitude. because it's cruel, self-centered and just plain wrong. Not morally wrong. Factually wrong.

I've been reading Jill Bolte-Taylor's "My Stroke of Insight". a wonderful book which has really revolutionized my view of my own ideas about dementia, because it gives me the tools to know I was right all along. Well, who wouldn't love that, after all.

Dr Jill was a Harvard brain researcher. When she was 37, she had a devastating left hemisphere stroke. In her book, she describes the whole experience, in a very interesting and entertaining way. with great insights and many understandings based on the merging of her stroke experience with her knowledge as a researcher.

At last, I found in there confirmation of my own observations of people with dementia. That they grow more emotionally open. That they don't lose creativity. That humor raises their functioning level. All kinds of stuff. Well, most of my observations referred to right hemisphere functioning, which is less stricken usually in dementia. Left brain is where we keep our calendar, datebook, schedule, shopping list, facts and recent memories. Right hemisphere is where we keep the big stuff. Emotional connection, intuition, sensitivity, oneness with all creation, fun, humor, creativity  -- that stuff.

So finally, I find written down the reason for the many great and powerful things I see that develop more strongly in people with dementia. Thank-you, Dr Jill!

Among the many things I love about people with dementia is that, in general, they are much more open to fun, humor and experiencing something new. I loved finding stuff to read to them they might not have experienced before.

When I had my care home, I'd read whatever caught my fancy aloud to The Ladies. "The Velveteen Rabbit, Or How Toys Become Real" was one of our favorites. Especially when it came to the zen-like questions within. "What is Real?" asked the Rabbit of the wise old Skin Horse in the nursery. The Ladies paid close attention to the Skin Horse's answer.

“It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”

"That's right," echoed Pearl softly. "People who don't understand."

And I knew that included her four sons and her one daughter, all of whom assumed by now their mother wasn't like a real person any more. But I knew that, like that shabby old Skin Horse, Pearl had Become.

 

YES, IT IS ALL ABOUT ME...

I only add all that because it is part of why I'm happy working with people with dementia. I feel close to them. From the very first up to now, I still feel close to them.

It has a great deal to do with my young life and its disruption. When I see an elder, moved into care or having care at home, frightened by the losses within, insecure, not knowing what's going on because they can't hold the narrative within, their feelings make a lot of sense to me.

When my young life changed, I was someone who didn't know what was going on. I didn't know why everything had changed.  Nothing made sense and I was filled with bewilderment and loss. Frightened. Alone. Confused. And lied to, for years. And believing the lies even though a truth was regularly paraded in front of me. I forgot who I really was.
 I forgot where I had once belonged. I forgot my happiness. I forgot my own name.

So, when I saw old people with a different story but also wounded and hurt by forgetting and remembering, no longer knowing their stories, not sure of anything, I felt as if I recognized them. They were who I had once been. Not exactly the same  -- they have dementia, I had a great loss. But having dementia is a great loss and they and I shared memory confusions and life losses. Different but similar enough that somehow I recognized them. And, typical of dementia, because I recognized  them, they were comfortable with me in a way that didn't always work with other people.

I run support groups and I know that shared loss and sorrow can bring people together as  happiness never does. And I think shared loss, even at different periods of life for different reasons, worked to create a bridge of recognition between myself and the elders I have cared for.

That and I always liked the old. I never felt so secure as a child or a young person.  Even from my 20s to my 50s, but once I got to late 50s and on, I finally felt I was arriving in my real life. I was born to be comfortably old. Aging doesn't bother me. I even look better with in than when I was younger, though maybe I fool myself there. Anyway, I like my face better now.   Too bad about the belly, but what can I say  -- you have one too or if you don't, you will. So there it is.

LOSING FEAR

I've never worried about getting old. I spent most of my worry energy on being young. Once I survived all that, I was so relieved, I never worried about all those usual other things. Getting old was never on my worry list.

I always liked old people. I liked them like I liked cats and dogs. I felt safe around them and they were emotionally rewarding. And I always knew of course that they were my great teachers. A discontented complaining old person is just as fine a spiritual teacher as a peaceful fulfilled elder. You just learn the lesson of them and you ask yourself, "Would I want that to be me?" and you figure it out from there.

Even so, I'm kind of surprised to find I've completed 24 years of being an elder companion. Just walking along at the pace of someone else, living an 89-year-old life for the day or the 24-hours or a month. Twenty years plus and not a moment of it has been wasted while I've been with the old and sometimes the very old and sometimes walking quietly all the way to death and stopping just short of the gates.

It's all been worth it. It has brought me a lot of peace, even though other people's families are sometimes heart-breaking to watch. Even that can be soothing though. It reminds me that my family were not so different from these people. Troubled, struggling, doing their best and their worst, becoming great souls or shriveling into tiny empty heart. Not so different.

 

When I started to live at Hannah's house, the first person I ever knew with Alzheimer's, I had no idea it was the start of something big, and lengthy,  and  limitless.  I just thought of it as a cheap rent gig. Then I became involved. Then it became more. And longer. And deeper. And the deeper I went. into that other land where dementia people live, the more fearless I became.

You see, when I was young, I was always filled with terror. Well, not when I was very young. But after I was four and everything had changed and everyone I had known was gone, and my name was not my name any more, and my mother was not my mother, that was when the terror began. Not just the daytime among strangers, often angry and needy, but the night-time and the hours of darkness too. Lying awake watching the light beneath the door, watching for the shadow standing outside the door. Terror.

 

But that's all over now, of course. But I will say, next to all that, really dementia is nothing. Even if I myself eventually come to have dementia, it won't hold the terror that my early life did.  

Really, it was all of that which made me a person who didn't fear much any more. Illness, death, spiders falling into the bath with me  -- easy. Well, okay, I am trying to be honest here, so I will admit that when a spider falls right into my bathwater and starts swimming towards me, yes, there is a little flourish of panic there as I scramble out. But in general I am not afraid of spiders now.

I am not afraid of insects, snakes, poverty, death (mine or someone else's), speaking to a crowd of any number at all, being in foreign countries where I don't speak the language. I am uneasy at night unless my dogs are around  -- but that too is nothing to do with today. It was part of the terror when I was young. That was then.

 

 

MY FIRST TEACHER

She was my first teacher in Alzheimer's and her name was Hannah.

I'm glad now that I knew nothing about Alzheimer's dementia before I moved into Hannah's house. I didn't know that people said and wrote and broadcast that Alzheimer's was the worst thing in the world.  That all Alzheimer's sufferers were crazy, angry wanderers whose illness destroyed their families' lives.  That they were the living dead. That they were empty, gone away, not even human.

If I had heard or read any of that before I met Hannah, perhaps I would never have moved in at all. And then my heart would never have been healed of sorrow and wounding.

The first time I met her, I liked her immensely. She was sitting on a battered sofa, apparently absorbed within herself. She seemed quite happy in an inward way, smiling gently as she nodded in a semi-doze. I sat down beside her.

"Hallo, Hannah," I said, holding out my hand. She took it between her own and held it there. Her skin was soft and dry against my own and she looked at me from light blue eyes, not old like the rest of her. She smiled until her whole face lit with pleasure.

"It's so good that you came!" she exclaimed, as if she had been waiting especially for me. and my own heart felt warmed.

I had been told that she had no short-term memory, but I didn't really understood what this meant until I saw its effect in action. Each time I left the room on that first occasion, she would greet me afresh on my return a few minutes later.

"Oh how nice!" she said. "I'm so happy to see you!"

She must have said that at least half a dozen times as I made a pot of tea and brought in cookies. Each time, the same fresh enthusiasm for my latest arrival -- about five minutes after the previous one. I thought it was charming.

I especially enjoyed it when, after I passed her some cookies, she said sincerely, "This is so wonderful. I shall never forget you!"

I smiled when she said that, in a private joke with myself. Oh yes you will, I thought. But I didn't mind. It was her illness that made her so, not her lack of willingness to remember me.

I found her delightful. She had a warm appreciative personality that made it easy to feel affection for her. She had been a handsome woman once. Big-built, with silvery-white hair and a patrician profile that must have taken years to grow into, she smiled readily and seemed very relaxed.

After we had tea and cookies together, I talked with the two other caregivers. They had invited me to become part of the household that took care of Hannah, in Berkeley, California, if I wanted to. Oh yes, I told them, I want to.

Next day I moved in. That was how it started.

MY DEMENTIA LADIES

I really love people with dementia. They are among my favorite people on earth.  I love what they say and how they say it and how they share their inner truth through the struggle of dementia losses. They're funny and interesting and deep, very deep.

That's not to say I have some unhealthy attachment to people actually having dementia. If I could give them a dose of cure-all-dementia medicine, I would. Because these all too often are frightened, lost people struggling with a personal nightmare.

That said,  I really love people with dementia. Do you know that no-one I've ever looked after,  who had dementia, ever knew my name?  That's an odd thought. But it never made  me feel unhappy because, of course, I knew that was typical of dementia. It was the territory they lived in, not the intention of their hearts.

I didn't worry they didn't know my name, because I knew theirs, and God knew ours. I didn't worry, because being with them filled my heart and my care filled theirs. And you probably know, many of the people who go on to have dementia had very difficult childhoods.

Not many people have commented on that, but I always noticed. Now that I do dementia workshops all over the place, I always ask people about the life histories of those who have dementia. And over and over, the same thing comes up. Childhood was hard.

And what's the connection with dementia? Well,  there has been no research into those issues  -- I guess because you couldn't write it down as a treatable symptom on the medication advisory. "Take two after breakfast if you had a bad childhood."

I work it out this way. Stress is the chief gateway of entry for every major health event that is not genetic. Even in plagues, like the Black Death in Europe in the 13th century, when one third of the entire population of Europe died. That means that two thirds didn't.

Stress releases adrenaline which  raises the amount of cortisol in the body. What is the price paid for an infant, a toddler, a young child being constantly flooded with adrenaline and cortisol? We don't know, but I believe part of the long-term price is the development of dementia in old age. I only conclude that from meeting these people at the other end of the road of life.

So, I've always seen my part in their care as being a chance to have life be safe and enjoyable for them. And I'm a fool for fun, so that bit's easy. Lots of silly in my brain.