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When I was in graduate school, I had to take a seminar on Petrarch, the Italian poet of the 14th century. I hadn't thought about him much in the last nearly 40 years but, while thinking about tonight, I remembered that our professor had said that Petrarch was a poet for older people. He dealt with the illusory and ephemeral nature of our existence and I made the connection because this is, to a great extent, what dementia is about. It's about how we relate to people who are no longer who they used to be – people who had personalities, habits, foibles, a sense of humour, most of which are vanishing or have vanished. And in a world which values individualism, it is very disconcerting to see people slowly lose theirs. Who are they now that their character has disappeared?
Judy asked me to speak to you tonight because my mother has advanced dementia and is living at L'Chaim. But before I talk about her, I'd like to talk about my late father who also became demented. My father was a surgeon, spoke five languages and was a bridge champion (my mother was his tournament partner). He was wonderful and we adored him. When he was 78, the whole family took a trip to London. We decided to go to Windsor Castle one morning but Dad preferred to spend it at the University of London Medical School's bookstore which happened to be right across the street from the hotel. After we came back and told him about our fabulous outing, he announced to us that he had Alzheimer's. He had spent the whole morning reading about geriatric neurology and this was his conclusion. We couldn't believe it – his memory was fine, he didn't forgetting things. But he insisted he was right. In the end, it turned out not to be Alzheimer's but stroke-induced dementia aka vascular dementia. Close enough, though. I was very close to my father and called him frequently. "How are you, Daddy?, I would ask - and he would reply "The disease is progressing." I used to wonder when he would no longer be able to report this to me and what he must have been feeling, knowing what was happening to him. When he consulted a geriatrician who asked him to write the sentence "Canada is a big country", he wrote down "It is difficult."
I'll tell you about an incident that occurred when the disease had indeed progressed. One evening around 9, I was home and the phone rang. It was my father and there was fear in his voice.
The conversation went like this:
Roberta: Hello.
Daddy: Roberta, I don't know where I am.
Roberta: What do you mean you don't know where you are? You're at home.
Daddy: Roberta, I don't know where I am.
Roberta: Where is Mommy?
Daddy: I don't know.
Roberta: Are you in a room with kitchen cupboards or with a bed?
Daddy: With a bed.
Roberta: Daddy, this is what we're going to do. In a minute, you're going to hang up and I will phone you back but don't pick up the phone. OK? Let it ring.
Daddy: OK.
I phoned, as I said I would, and my mother who was watching TV in the den answered and I told her to go to the bedroom and bring my dad to the den to sit with her.
Now, if you think about it, this is a very strange story. My father knew how to dial my number and knew that I was on the other end and yet he did not know that he was in his bedroom, in his own apartment. It's truly paradoxical. And that's the thing about dementia, it's about living with paradoxes and ironies. – And it's about diminishment, like having your driver's license taken away or waking up one morning and no longer knowing how to make coffee, something you've done for 60 years. It's strange and it's cruel and frightening - and logic does not apply. And now, you, the adult child, have to parent your own parent. But how do you parent someone who isn't a child? Another paradox.
My mother's dementia is somewhat different and its causes are complex. Suffice it to say that she too suffered declining cognitive abilities. She began by getting help at home which ultimately extended to having caregivers 24/7. But that did not last and I sold her condo and moved her to live with me and my husband. But after a time, as her disease progressed, being together became more and more difficult. How do you handle someone who asks you the same question every 15 seconds? And what do you do when you feel yourself going downhill? At one point, my son who is a psychiatrist said to me: "You know mom, everyone has an emotional bank account, and when that account runs dry, it is very hard to refill." And that's when I started to look for a place that would give my mother the kind of environment she needed. And this is why I chose L'Chaim.
In Shakespeare's Hamlet, Hamlet says "I must be cruel to be kind." Another paradox. Yet I can relate to it. I had to be cruel – by inflicting psychic pain on myself – to be kind to my mother and find her a place to live the life that she needs at this moment of her life. She frequently says: "I want to go home" as do many who suffer from dementia. But home does not mean a place, home is a state of mind. "I want to go home" is a metaphor and it means "I want to be as I used to be," "I want to be well".
My mother complains to me that she has made no friends at L'Chaim. But how could she? She can hardly communicate anymore. She still understands three languages, only she can barely find a word in any of them. Her neighbours can't communicate very well either. They are all shadows, incarnate shadows, who others live in their bodies and have feelings – another paradox. When I come to visit at L'Chaim, I always observe my mother for a few moments before she knows I'm there. I invariably see that she is engaged in whatever activity she is involved in and she seems content.
Petrarch writes in Sonnet 26 of his Lyrical Poems:
Grizzled and white the old man leaves the sweet place, where he has provided for his life, and leaves the little family, filled with dismay that sees its dear father failing it:
Shakespeare and Petrarch grasped what dementia is all about. But most of us are not poets and, for us, "It is difficult."