Calling dementia a miss has nothing to do with gender. Instead, I’d rather you look at it as a piece of advice, because I recommend you miss it by all means if you can; perhaps, like misdemeanor, it would be better spelled with one “s”. Anyway, it adds a little character to an affliction which affects many seniors and, as you will see in my comments, it can affect care-givers, too.
So, is it all gloom and doom? Do we have to see it as something completely negative or are there times when you have to smile or even laugh out loud. (I remember one day laughing at one of Rosemary’s mind-shattering one-liners. When I finally stopped laughing she said, “You better watch it or they’ll be coming for you, too!” Now, how do you keep a straight face after that?)
I think there are plenty of negative occasions, but there are also many times when you just can’t avoid a smile, and a smile can make a difficult situation bearable. With that in mind, I have put together a few personal anecdotes to show you what I mean. I should explain that my wife, at age 92 ‘’going on 93”, has dementia and I, aged 87 “going on 88”, am the designated caregiver; sort of “the blind leading the blind” arrangement which may be at the root of some of our funny and not so funny experiences. They are not in any chronological order, some happened months ago and some happened just recently; it’s just as they come to mind.
Right at the outset, let me admit that all anecdotes are written from my point of view and you can rest assured that my wife’s recollections would be entirely different to mine. I recognize the one-sidedness of it all but, after all, the pen is mine which gives me an edge sitting here writing. Still, it is meant as a laugh at the given situation and not to be taken as anything personal. I love my wife, and we are in this together. My basic motivation for this article is to let others see how this Golden Age for seniors can develop. If it’s not immediately obvious, I should make it clear that I have no medical training whatsoever and just use my own intuition dealing with these things.
It has always been our intention to stay at home as long as possible, using long-term retirement facilities as a last resort. In other words, there would be no attempt by either of us to pass our responsibility for our partner on to someone else. We were in this together and would stay together as long as possible, until such time as circumstances made it medically impossible. Put simply, we’d both prefer to die at home. My cardiologist did point out to me that I should get us both registered for long-term care now because the waiting lists are six or seven years long, and at some time we may need it, so Rosemary and I did put in our applications and visited sites and selected a few locations which would be feasible for us. Before the arrival of the present Corona-19 virus pandemic Rosemary also attended Day Care one day a week, albeit reluctantly. (She still preferred staying at home.) So we are “in the system” but we’d prefer not to have to use it. Enough said, let’s get started!
Last December, I wrote a poem to Miss Dementia, my chief suspect, in which I lamented the theft of my wife’s hearing aids and a cheap watch. The hearing aids and her glasses would temporarily go missing on a daily basis, until the day we could no longer find them. Rosemary swore it was not her fault. That left me, the only other occupant of the house and I knew I wasn’t moving them around. It had to be Miss Dementia! That’s it – even Rosemary agreed! In the poem I called Miss Dementia out, and things did improve somewhat around here for a while although the hearing aids were still missing through the rest of the winter. Those two missing aids were the 5th and 6th to disappear. Financially, I couldn’t go on like that. To replace them, even after government aid, would be about $1,400 each, so at our family doctor’s suggestion I looked around for something cheaper. I found that on Amazon.ca; they weren’t perfect, but they were pretty good. Anyway, they’d just have to do.
Then one day in April, a week or so after buying the inexpensive replacements, out of the blue, Rosemary pulled something out of the pocket of a seldom-used jacket that she had just put on. It was bud-like, skin-coloured and no bigger than a Brazil nut. I know what that is, it’s one of hearing aids numbers 3 and 4! They had been missing even longer than the December ones. It was a great moment for my wife. This pair had disappeared about a month before numbers 5 and 6, which I had already wrote about.
A week or two later, in the very same jacket, up popped the other hearing aid! Miss Dementia had put them there! My wife swears that she didn’t put them there and I know I didn’t and so, ipso facto, it must have been Miss Dementia! Now we understood what she does with the loot, she moves it around and hides it, just to confuse. The cheap watch was found last December, but Hearing Aids 5 and 6 are still out there somewhere.
But that’s not all that Miss Dementia fools around with! Oh, no, it’s not just items going missing, she has other tricks in her bag. One of them is creating fictitious people. She adds people!
Visitors, courtesy Miss Dementia:
Adds people, you say? Oh yes, visitors that come and go and mix up Rosemary’s thinking and yet ALWAYS manage to dodge being seen by me.
“You mean, Gerry, you never ever see any of them?”
“Never! And how they get in and out of the house is a mystery to me. The front door is locked and chained and the back door is locked, so the only way in is down the chimney. On Christmas Eve maybe, but that’s all.” The mysterious visitor occurrences are usually described as follows.
Scene 1. “My sisters were here last night. They were talking but I just listened.” Hmmm, I wonder how they got in.
“What do you mean?” Well, the place is all locked up. “I heard them talking.” Don’t think so. “Oh, you never believe me.” They’ve both been gone for many years.
“They have? You mean they’re dead?” Yes. I know they seem real but they only exist in your mind. It’s Dementia trying to screw up your mind. She tries to mix you up, and it’s my job to keep you in the “real” world and fight to hold her back. They weren’t here.
“Hmm, but I’m sure I heard them.”
Scene 2. “Where did they all go? Did you see them?” No, there’s no-one here except you and me.
“Oh yes there is, they went off to the party across the road but they didn’t invite me.” There’s no-one here except you and me and it’s been like that since March 10. We all have to stay at home, there are no parties, it’s the virus, you know.
“Ah, yes, that’s right… but I still wonder where they went.”
“There is nobody else!”
“I know you don’t believe me, but I heard them.”
And, of course, she’s right; these “visitors” are as real to her as she is to me. But they are mostly faceless and unknown to her. There are two different worlds at play here. I spend quite a bit of time using the logic of “locked doors, no other way in except down the chimney” etc to bring her back into the real world. Her strained face will ease as she sees the logic of my argument, and I finally settle for a partial win:
“I guess you’re right, but it was very rude of them not to invite me to go with them!”
This scene repeats itself at least once a week. Sometimes, though, the emphasis is not how they left, but who visited. Thus we have visits by her mother (deceased) and, her two sisters (both deceased), and others – all products of Miss Dementia’s mind.
We have to go Home!
This trick was especially prevalent during the winter months! For some reason, (only Miss Dementia knows why!) Rosemary didn’t think she was at home. This was not a comfortable daytime hallucination. No, this had to be in the middle of the night.
Scene 1. 3 am. My bedroom light is suddenly turned on and I am rudely awakened. I look over at the clock; it’s 3 am! There she is standing by my bed, fully dressed with her winter coat and boots on with that wild wide-eyed face she has when Dementia is in command.
“We have to go now. I want to go home!” But we are home and it’s the middle of the night! “No, not this home. The other one that looks just like this one!” Hmmm, well it took a while but I finally persuaded her to get back into bed.
Two hours later, 5 am, she was back, dressed and ready to go again. Again, I convinced her to go back to bed. This happened two or three times, but being awakened like a prisoner in a cell for questioning under a bright lamp during the night was more than I could stand. That was the day I turned the standard lamp off. Thereafter, when she tried the switch on the wall, nothing happened.
Scene 2. “Where does the other guy live?” What other guy, there’s just you and me.
“No, the other guy who sleeps in the other bedroom.” There is no other bedroom, we only have two.
“I think his wife lives on the floor above.” Rosemary, we only have two floors.
“Oh, no, there’s another floor but I don’t know how to get to it. They own this house!”
Scene 3. One morning, with the temperature well below zero, our neighbour sees Rosemary come out of the house, staggering somewhat in the ice and snow. She was going home! Realizing the situation, he brought her back to the house and called out for me. That was the day I added a chain to the front door. At first, she tried to figure out how it worked but eventually gave up. It’s still there.
Multi-personalities ascribed to me!
Then, we have the “I’m not just her husband” situations. I am seen at different times as four different people, one up on the movie, “The Three Faces of Eve”, and any one of the four can pop up at any time without warning. I’ll give you a few examples:
Situation 1. (This one occurs fairly frequently!) We are at dinner, everything quite normal and peaceful, then, like a bolt out of the blue, she’ll ask,
“When did you get here?” Answer (a bit sarcastic, because I know where this is leading): “Oh! 1985, I think.”
“No, I mean today.” Answer: “Today? I’ve been here all the time.”
A few bites further into my meal there comes another question,
“Do you live around here?” Answer (frustrated): “Pretty close.”
“Are you married?” Answer: “Yes.”
“Have you been together long?” Answer: “About forty years!”
“What’s she like?” Answer: “Pretty much like you. Name’s Rosemary.”
“Same as mine. Do you mean you’re my husband?” Answer: “Yep!”
“I’m so glad because I love you.” How do you answer that?
Situation 2. “We had a fight last night?” Answer: “Who did?”
“Me and my husband. I hate him!” Answer: “Oh, what happened?” (Of course, I knew already. I had barked at her pestering me when I was cooking supper. It was just before my tablet time and my patience was at a low ebb.) “Oh well, I’m sorry, that was me.” I figured I might as well confess.
“No, not you. I love you. It’s my husband, I hate him! He only comes here once or twice a year.” Well, enter Jekyll and Hyde! Now, I was two different people. “You mean Gerry?”
“No, that’s not his name.” Answer: “Oh, you mean your first husband?”
“No, I’m not talking about him either.” Answer: “Well, there’s just the two of us. You’ve only been married twice.
“No, it was the other husband.” Answer: But, you’ve only been married twice.
“No, there was a third one, but I can’t remember his name.” Oh boy, but I gave up.
Situation 3 It was about 4 pm, and Rosemary had just awakened from a nap. She came down to see me at the computer. I forget now what we talked about but after a few minutes I said,
“Shall we go up? I have to start supper?” Yes, and up we went. In the kitchen, things went along smoothly, making a drink and so. Then I said I had better get started on the supper. She looked at me with that strange look and said,
“I was just talking to the guy downstairs and he’s making supper!” Answer: “That was me!”
“Oh no, not you, the guy at the computer!” No answer. I feel like taking out my driving licence just to be sure I am really Gerry Wood because, at times, I wonder.
Acting Your Age:
One of the surprising things for me is, Miss Dementia also plays around with Rosemary’s age. Some mornings, she’ll come downstairs looking for “the kids”. She’s worried because they aren’t home yet and it usually takes me quite a while to calm her down on that one.
After a nap one day she said, “I can’t find the kids. I don’t where they are!” Well, they aren’t little kids anymore, your daughter is in her sixties! “She is?” Yes, and she doesn’t live here, she lives in the US. And, wondering what my role is all this, I ask, “Do you know who I am?”
“Yes, you’re my father.” Oh boy, will the real Gerry Wood please stand up. “You’re 92, “going on 93”! How old do you think your daughter is?” That usually stops her for a minute while she ponders the math after which I’ll continue with, “She’s over 60 years of age! She’s not a child anymore.”
I assume these issues are closely related to memory loss. Long-term memory can be jolted by showing her photos of yesteryear and that usually works well, but short term memory is something else again and often leads to amusing situations.
A lot of this stuff is amusing, but sobering too, because I notice some of this is now happening to me, not to the same extent for sure but the signs are there; the struggling to find the right word, starting to do something on the computer only to be deflected by incoming messages or downloads that make one lose track of what they started out to do, that sort of thing. In Rosemary’s case, it’s sometimes taking off to get something and then forgetting where she is going or what she is going for. Sometimes, it’s asking a question and then the answer doesn’t register. Let’s look at a couple of examples:
Scene 1. Today, on the deck, I was eating my supper. She got up to take her empty plate in to the house and then reached for mine. (These days, my empty plate doesn’t get pushed aside for more than 20 seconds and she is up to take it to the kitchen. It’s like being in a restaurant that closes at 9 pm and it’s five minutes after nine already!) As she reached for mine, I said I wasn’t finished yet. She kept her hand outstretched, waiting, so I passed her the plate. She looked at it and said,
“You’re not finished yet!” Right! I got my plate back. Five minutes later, she was back looking for the plate again. I tried the same thing again, saying I wasn’t finished yet but again she waited until I handed it over. She looked at it,
“You’re not finished yet!” Hmmm, right again. But this time, I gave up and let her take the rest of my meal.
Scene 2. I gave up drinking years ago but Rosemary, not wanting to drink alone, often urges me on. In front of me sat a full drink which she had made perhaps 5 minutes earlier.
“Would you like a drink?” Thanks, you made me one just a few minutes ago.
“Oh, right.” Two minutes pass.
“Would you like a drink?” You made me one already. See, it’s right there! (Untouched) Another five minutes pass.
“Would you like a drink?” Answer: (exasperated) “Well, okay!” After the second drink is made, she looks at me in amazement and says,
“You have one already!” Yep, that’s right. Sometimes you just gotta give up.
The uncanny thing about all of this is that most of the time she acts quite normal. She dresses herself, always conscious of how she looks, colour-conscious as far as her limited wardrobe permits and NEVER smudges her lipstick. And when she smiles it is a beaming smile that radiates her underlying personality. She tries so hard to please me, to the point where it is often more than I can handle, and at times like this, you would never suspect dementia.
But then there is the second face, one strained and wide-eyed; that’s when Miss Dementia in full control. There’s a third face or personality which is a mixture of the two, normal in most things except those reserved beliefs as to the existence of these fictitious characters and other unmentioned thoughts.
I always talk things over with her, letting her know that I realize these other people are just as real to her as I am, but explain that they don’t really exist in the “real” world. It’s just Miss Dementia trying to mix her up. I don’t ignore what Rosemary thinks she sees; I don’t just push her off with an unfeeling, “Oh yeah!” I want her to understand what is happening.
Sometimes, I can see how the imaginations have originated. Sometimes, I can’t. But I always tackle the dementia thing head on. We both know she has it but I have tried to show her it is just one form of aging. I blame dementia for the brain cells that are dying off and explain to her that it is Miss Dementia trying to gain control of her thinking. “She’s always trying to mix you up and make you forget things. We can’t stop her, we can only slow her down, but if we work together talking over all these strange happenings we can stay in the real world.
If I just left Rosemary to wrestle with these things herself, she wouldn’t last long. But together, I tell her, we can give Miss Dementia a kick in the pants and tell her to get out of here. That usually brings a smile to her face.
We’ve made some headway!
In conclusion, I would say we’re making progress. With the help of our family doctor, her daughter, the Alzheimer’s Society, family and friends I see some progress. For instance:
- Having her eyes tested and buying a pair of reading glasses has made her day more interesting. She takes more than a passing interest in the daily newspaper now, and is well aware of the pandemic unfolding before our eyes.
- Although she no longer remembers anything about cooking, she loves to act as assistant chef, stirring the pot when sautéing, and fetching things from the cupboards, which is a great help in her remembering where things are stored. She needs to feel needed. She wants to stay active, and is not content to be shunted off into some corner.
- We can laugh at the many faces of Gerry, but she knows that I am always here for her. She has overcome her initial fear of being put into a nursing home, knowing that I have promised never to do anything like that behind her back. As long as I’m here for her, she feels safe.
- Doing Word Search puzzles has given her greater confidence in herself, and the realization that dementia is not necessarily the end of reason. She was impossibly slow with the puzzles at first, but has become more interested as she has become more proficient. Today, she astounded me by solving a puzzle which involved two logical steps to get the answer. I was in the other room when I heard the exciting cry, “I got it!” Yes, she did get it and she did it all alone.
My thanks go out to the Alzheimer’s Society for the daily follow-ups they are making all through this pandemic. They provide all sorts of helpful suggestions and moral support for both the client and the caregiver. I think they are marvellous. I am also very appreciative of all the help and support given us by our family doctor, by her daughter and step-daughter, all of whom she worships, and all the other family members, friends and neighbours who are helping us through this phantom world of dementia. You never know what to expect but, at this stage at least, we can still roll with it. It just takes a lot of patience, some loving care and a good sense of humour. I’d say Rosemary is doing very well for 92, going on 93!
Gerry Wood, May 26, 2020