The Essence of the Thing
As most often now, Ken was sleeping when I entered his room. He opened his eyes, said hello, and dozed off again. This is how our visits most often go. I watched him for a while, quiet. I sometimes wonder if he will be surprised to see me there when he opens his eyes again. Maybe he is, but doesn’t say so. Or maybe he’s not.
He woke again and said, alarmed, I thought even frightened, "Have I been asleep for a day and a half?" I said no. "Weeks?" he asked, more alarmed. I hadn't seen him frightened before. Unhappy to be where he is, yes, but not frightened.
He closed his eyes again, and when he opened them, he asked, again sounding frightened, "Why did you let me sleep through the war?" I asked him which war, and he said, "The war with Russia. Weren't we bombing Russia?"
This hadn't been a dream. Or, if it had been, it wasn't that he was still caught up in it. Ken has dementia and lives in a memory care facility now. He had forgotten the question soon after he asked it -- another brief moment in his now fleeting reality.
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A pencil drawing of Ken's hands that I did before I moved him into care. |
Ken was a brilliant man whose sharp mind and insightfulness gave him enormous pleasure and satisfaction, and made it rewarding and satisfying to talk with him on almost any subject. Many of us who love him miss those conversations most. I hasten to add that having been brilliant doesn't make his dementia any more tragic than anyone else's. If he'd been a great chef, we'd miss the meals, and the pleasure he took in preparing them. If he'd been a good mechanic, it would be painfully difficult to now have to take our cars to the shop. But perhaps because we all valued Ken's brain so much, the slow disappearance of the very thing that gave him so much pleasure, and that we held in such high esteem, feels especially sad and poignant.
We think of dementia as memory loss, but the losses are much greater than that. Dementia is being lost in time and space, it’s loss of the ability to reason, to evaluate, to put two and two together, it’s truly living in the moment, which brings the loss of the ability to read, or to appreciate baseball games, or to grasp a film, because you need to bring the past with you to understand what’s happening now, or what comes next, even when that past is only moments ago. Dementia is the loss of the ability to calm yourself, to entertain yourself, to even care about entertaining yourself. It's the loss of the ability to learn, to make new memories. It’s personality loss, it’s the loss of self. For those of us who love someone with dementia, it’s the loss of the person we love.
When Ken woke again, he said, “I wish I wanted to go home.” He had never put it this way before. I took it as a version of, “If I were home I wouldn’t feel as safe as I do here,” which he has said from time to time, and which I'm always comforted to hear, even though it's a thought that leaves him as quickly as it arrives. And, I haven't heard it in a while now. He sometimes knows he's in a retirement facility of some sort, but he has no insight into his dementia, so he doesn't know why he's there and not at home with me. This lack of insight in people with dementia is much more common than understanding, and I feel fortunate that at least he doesn't have to cope with the loss himself, because that can be very painful. He'll often say, "I don't even know why I'm here." He once asked if it was because of the sore toe he had at the time.
Then, a moment later, “When can I go home?” Had he changed his mind and now wanted to come home? No, I don’t think that changing his mind is something he has any control over any longer. Dementia runs things now. He lives almost entirely in the moment, and what he’s thinking requires no work on his part. I envision each moment passing, unremembered, and unconnected to the next. I answered, as I usually do, that we don’t know.
And then he asked, as he always does repeatedly, and I never am, “Are you here for lunch?” He has lost his sense of time of day. He no longer remembers whether he’s had breakfast, or which meal is coming up. He often seems disturbed about any meal, though, unsure of whether he wants it or not. If I’m there before lunch, as I usually am, he’ll say he doesn’t want to go. But then he’ll worry about what happens if he gets hungry later. Maybe he can go get some chocolate milk. So, no, he won't go. But then, when an aide comes to tell him it’s lunchtime, he goes.
Still, after almost two years, he will ask me whether they bring meals to him in his room, or if he goes to the dining room. Then he'll ask if it's cafeteria-style, or the meals are served. He once described getting to the cafeteria by walking down a long hall with pots and pans hanging on the walls. I don't know where that image came from. It could be someplace from the past or it could be an invention. But here it's a dining room where people are served at their tables. No standing, no making decisions about what to eat.
His confusion about this happens so often, probably before every meal, that I have come to imagine that all that's left of all the meals he’s ever eaten — at home, at restaurants, in hospitals or cafeterias — in whatever part of his brain they are still stored in, is a kind of Platonic ideal, the true, philosophical, non-physical essence of the thing that is Meal. Or Meals. Now, multiple equally plausible images of mealdom -- whether self-selected in a cafeteria, a hospital tray brought to him in bed, or a dinner plate served at the table -- are still accessible to him. But, he can’t settle on just one because he has essentially not been making new memories since long before memory care, so he doesn’t know where he is, or how he gets his meal, but he does still have, somewhere deep in the part of his brain that generalizes about life, that apparently can still generalize about life, images of the possible ways that a meal might appear before him. At some point, of course, this, too, will disappear.
He still carries his wallet in his pants pocket, and wears his cell phone on his belt. He won’t leave his room without either of them. For a long time, there was only an expired driver’s license in his wallet, but then he lost that wallet, so I bought a new one, printed out a scan of the first page of his expired passport because I didn't have an image of his license, and images of his insurance cards and loaded those into the new wallet. I wasn't sure I even needed to do that, but when I gave it to him, he did check to make sure there was something in it. Happily, he was satisfied with what he saw.
I cancelled his phone line a few months after he had forgotten how to turn the phone on, which was not long after he no longer knew how to answer it. So, neither his wallet nor his phone any longer perform their primary functions — he has no credit cards, no money, no valid id, and he can’t make a phone call. But to Ken, they have quite literally become their Platonic ideal, and that’s what counts now. They bring him security and comfort. When he gets ready to leave his room, he goes through the same motions he's gone through for much of his life -- wallet, phone, pen, paper, (he no longer checks for his keys), ok to go down to the dining room, or cafeteria, to either choose my meal or be served. I have come to admire his courage for venturing into the unknown at least three times a day.
Old Age is Loss After Loss
As an academic, and even after he retired, Ken lived on his email account, and took care of most of his business this way. He was known for replying instantly to any message. People worried when he didn’t. He was a researcher, he was on a number of editorial boards, he was a department head, a professor, a collaborator, a parent, a friend, and he had extensive correspondences in all of those roles. He organized his email by maybe 50 different labels and sublabels; Editorships, then Reviewing, or Personal, then Letters, for example, and he had tens of thousands of messages going back many years.
A few years before I moved Ken to memory care, when he was still active on email but already having a bit of trouble figuring out how to use it, I was helping him with something, and I had to get into his account. I clicked on one of his labels, maybe Editorships, and then Reviewing, and discovered that there was nothing there, not a single message. I clicked on other labels and found nothing under any of them, either. All I could find were some messages in his inbox. He had, surely inadvertently, deleted years and years of correspondence, all of which he’d carefully curated and saved — for what? For later?
I found this to be both deeply disturbing, and deeply profound. On the one hand, years of back and forth collaborations, chatty messages from his children, his thoughts on academic papers he’d been asked to review, or reviews of papers of his own, correspondence with students and ex-students — so much of his life — gone in an instant, by the mistaken touch of a key on a keyboard.
On the other hand, what had he been saving it all for? He had never expressed any interest in writing his memoirs — if pressed to say what had been the most interesting parts of his life, I think he’d have said the world of ideas, and his own could already be found in his books and papers. And, no one was going to write his biography, so what did it matter that it was all gone now? He, to whom it should have mattered the most, wasn’t even aware that it had happened, so why should it matter to me?
The digital evidence of our lives has become as real as the physical. To me, this was a small death, one of the first in what’s turning into a long string of small deaths. Indeed, dementia is sometimes known as "the long goodbye." Loss after loss.
That Question
I think Ken still has a Platonic ideal of Day in his head, too. Wake up, have breakfast, do stuff, have lunch, do stuff, have dinner, shower, go to bed. Now, for "stuff" read "take nap." He no longer does anything but nap without prompting, and sometimes not even then. I think this might be because, in the map of Day in his head, he's already done whatever it is he's being asked to do. Or he will do it later, he really will. So, it's hard to convince him to take a shower because he is certain that he either already has taken one, or that he will. Just like in his old reality.
But, the other day I managed to talk him into showering, and I was helping him get ready. He took off his shirt and I noticed he had a bandaid on his wrist. I thought perhaps he’d had blood drawn, though they usually inform me when that happens and I’d heard nothing about it. But, if so, I assumed he would no longer need the bandage so I suggested he take it off. It turned out that he had a jagged cut, now healing, on his fragile skin, definitely not a blood draw. It looked superficial but had clearly bled a lot. He, of course, had no idea what had happened and unless I happen to run into the aide who helped him clean it, I’ll never know.
But, it doesn’t matter. I put on another bandaid, the wound will heal and he’ll be fine. But, I wonder every day whether there will come a time when the intensity of the guilt and grief that has weighed me down since I moved him into care will abate. This incident told me something about that.
People often ask, “Does he still know you?” This is a real question, yes, and it’s definitely a big deal line to cross. But, it is also superficial in a way, since so much must already be lost before that point is reached. Indeed, years usually go by between the onset of dementia and this, but everything that happens before that will have been just as hard as the loss of the person’s memory of those they love. Or at least I think that’s true. The first time he forgot what to say when he answered the phone, and then how to answer the phone; the first time he forgot whether it was breakfast time or lunch time; when he couldn't remember whether I was with him in England in the Air Force or not (I wasn't), these were all difficult, and there's a new difficult thing almost every day. So, I don’t know what it will feel like the first time he forgets me because we aren't there yet, but maybe it's a feeling I already know.
I have always assumed that the complexity of the connection I feel to Ken will lessen when he no longer knows me. I suspect that I'll gain a bit of anonymity that will mean he will no longer be expecting Anne things from me. It turns out that, for me, the discovery of a wound that I hadn’t known about, hadn’t discovered, hadn’t washed, and hadn’t bandaged, may have given me the sense of how this is going to feel. I know that when he was looking for someone to help take care of the wound, if he was, it wasn’t me he was looking for. And I know that he had no idea the he had a bandage on his arm 2 minutes after it was placed there, so even if I had been the one who had placed it there, he wouldn’t have remembered, and the fact that I had helped him would no longer mean anything to him.
Ken won’t go to bed one night fully aware of who I am, and wake up the following morning having forgotten. It’s a gradual process which I can already see happening. It’s been happening for years. He still tells me he loves me, and he is still pleased to see me when I visit. Though, the other day he said, “We’re married, aren’t we?” It was impossible to know what prompted this — his head had taken him back to when we were together but not yet married? He wasn't remembering that I was his wife? I will never know, and whatever the reason, it was fleeting.
I may feel differently when he no longer knows me, but I now think that forgetting what happened two minutes ago, or no longer sharing my reality, are as deeply significant in their way as his no longer knowing who I am will be. In significant ways, I am already as temporary, as easily wiped from his mind as the wound that required a bandage — already out of sight, out of mind. Just not yet completely.
Reality, Now and Then
A few weeks ago, the wife of a resident who Ken has sat with at meals every day since he’s been in memory care texted me while she was sitting with them at lunch. I had been visiting, and then, as always, I walked Ken to the dining room, said goodbye and left. This woman, who has become a good friend as we both deal with husbands with dementia, texted five minutes later to tell me that Ken had just told her that I was in North Carolina with our daughter. Later, he told her that I was in Europe. And recently, he asked me if I’ve moved yet. I asked where I was moving to. He said he thought I was moving to North Carolina.
Does he feel I’ve abandoned him? Or would? I have certainly learned that just because something makes sense to me, in my brain not being destroyed by dementia, that tells me nothing about what now makes sense to him. I don’t see him when I’m not there, so I can’t know, but he doesn’t seem to feel abandoned. For him, when I'm there, I'm there. When I'm not, I'm not; I'm who knows where. He seems to live in both realities as though both are always true. That is, he truly lives in the moment, each moment his current reality.
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A few years ago, I decided to draw my completely invented idea of what happens to a brain with dementia. I envision a very slow melting of the lobes. I did this with Procreate. |
I’ve heard Ken say, when asked about the genetics research he used to do — which he no longer reliably remembers — that he ran a grasshopper lab, a fruit fly lab, studied intestinal diseases, or memory in WWII veterans at Walter Reed Hospital who’d lost half their brain. None of this happened. He’s not just forgetting his career, he’s inventing alternatives. He doesn't talk about Penn State or his career anymore. He was there for 35 years, but a year ago or so when we did talk about it, he remembered it as maybe 7. His 5 years in the Air Force as a meteorologist when he was in his 20s are more real to him now than his long and successful career. This isn't a surprise because, for people with dementia, earlier memories last longer. Even his Air Force memories are fading now, though.
He has told stories of having worked in a bookmobile above the Arctic Circle in Finland during winter, he’s had sabbaticals in places he’s never been, he’s made his children’s travels his own, and even been down to see the Titanic. All of this is confabulation, and it’s common with dementia.
There has been disagreement in dementia care over the years as to whether it's better to go along with these kinds of stories or, instead, try to pull the person back into our own reality. Their old reality. There is now general consensus that no reminders, no amount of impatience, or scolding, or yelling, or arguing, can change the reality of someone with dementia. It's better for everyone if we meet them where they are. I find that trying on the idea that their reality feels the same to them as it ever did makes this easier. Plus, emotions seem to linger when words don't, so the attempt to remind someone of what we know to be true, but they no longer do, can cause more harm than good. Of course it's painful to see someone lose what we had with them. But, that is the nature of the disease.
Ken sometimes asks why he's where he is now, and I always find this difficult to answer. Dementia care workers often recommend the use of "therapeutic fibs" for situations like this. I am completely fine with this, but I can't always think fast enough to come up with one and so occasionally I have told him that he's got memory issues. He is always surprised. I have asked if that seems true to him and he says no, even as his reality diverges further and further from mine, and from what it used to be, an ever-growing schism in what was once our shared world.
Much of what happens in the mind of someone with dementia seems hard to understand. What is it like not to be able to follow the plot line of a book or a movie, or to not remember something for 2 minutes, or to be so distant from a reality we once shared with people we love that we can invent stories with abandon but not know it, or to forget people we once knew intimately and loved, and then to have no idea that our memory now works this way?
Confabulation might be easier to understand. I think we've all had the experience of absolutely knowing that something happened, being certain of a memory, but then being told convincingly that we are wrong. It could be a memory that we've held on to for decades. We might even have clear images in our heads. Indeed, we are all susceptible to the creation of false memories, through suggestion or misinformation, or these memories might simply be the product of our own imagination. We've all unintentionally confabulated. Our memories, even at their best, are not infallible.
And, given that we can recognize that we might have this in common with people with dementia, it might require us taking just a few more conceptual steps to recognize that, for people with memory loss who don't have insight into their disease, what looks to us like a very foreign new reality doesn't feel new or strange to them at all. They don't know that their brains aren't working as they used to. So, while forgetting people they once loved is painful for those who've been forgotten, it's simply reality for the person who's forgetting. Indeed, every time they see the people they once loved it can be like meeting someone for the first time, something we all recognize. Reality itself has become a Platonic ideal.
Is it Ok to Publish This?
I write this post for people who've known Ken for a long time or who knew him only through this blog, or through his published work, or maybe who had him as a professor, but I also hope that what I have written here will mean something to people who've never heard of Ken Weiss before now, who haven't read any of his work, including the thousands of posts he published here on the Mermaid's Tale. Yes, it is said that if you've known one person with Alzheimer's disease, you've known one person with Alzheimer's disease, but I think there are aspects of the experience that can be generalized.
I've been writing for years about Ken's Alzheimer's disease for myself and a few family members and close friends. I have felt strongly about protecting his privacy, and because he can't give true informed consent, I've not wanted to write about his illness publicly. But, not long ago, Ken asked what I do all day. I told him simply that I draw, I paint, and I write about what's happening to him. He found that interesting. I asked if he thought I should blog about it, and he said yes. This is certainly far from recognizable informed consent, given that he doesn't understand what's happening to him, but it's the closest thing I'm going to get from him. So, when Holly mentioned in her post last month that she'd gotten a book from me, I thought maybe it was time to explain.
I now live alone, but I remain surrounded by Ken -- his clothes, his library, his CD's, his computer, his bike, his bike repair tools. I have been living as though he's going to recover and come home and pick up his life where he left off, but he isn't. The long goodbye.
The old Ken is gone, and won't return, but there is still a Ken. There's no rush for me to empty my house of him, but could it help me accept the permanence of this disease if I started to work on it? A dear friend who was going through the very painful task of sorting through her wife's things after she died, very kindly offered to come help me sort through the clothes that Ken would no longer wear, whenever I was ready. We did this, but I left the space we'd emptied empty. I couldn't bring myself to use his side of the closet. It wasn't until months later, when I had to clear out the entire closet because of work being done in the attic that was accessed from a hatch in the closet ceiling, that I could actually hang up my own clothes on "his" side when the work was finished.
In the same spirit, Holly offered to come help me sort through his books. I was so grateful for this, and it especially meant a lot to me to have so many of them going to her. I know Ken would have approved. And, one of the books she chose to take was Fossil Men. If you haven't read her post about this book, do! Ken would have loved it!
And, my daughter, who grieves those missing conversations with her father every day, has convinced me that he would have wanted his story written if there was any hope at all of someone else resonating with something we have learned along the way, perhaps learning from it, too. Dementia is a tragic disease, indeed a long goodbye. It's because it's so common that there are tremendous resources available to those of us living with it -- an amazing Alzheimer's Association social worker has called me at least every month for 5 years offering invaluable advice and support and care, a palliative care team was very helpful for a few years until I moved Ken into care, my sister has been invaluable, Ken's sister, many of the staff where he now lives have been kind and understanding, the wives of other residents in the memory care unit, women who understand what it means to lose a spouse this way, have been welcome fellow-travelers, dear friends have kept me standing upright, as has my daughter.
Dementia is a long hard haul. It can break families, it can cause caregiver burn-out, it can deplete finances, and it always leaves much grief in its wake. If there is anything I have said here that might lessen the burden for someone else dealing with this disease, even if it's just knowing that you are not alone, I am grateful. I choose to believe that my Platonic ideal of Ken would be grateful, too.
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