Dementia & Stigma

There was an article in the Sunday Aug 9th Toronto Star titled “Stigma takes deadly toll on people living with dementia” written by Alisa Grigorovich and Pia Kontos which I might not have seen but for the fact that it was brought to my attention by my wife who, herself, has dementia.

She offered me the Insight Section of the newspaper opened to the article to read; as she did, I noticed a moistness in her eyes. At that moment, I didn’t know what it what was she wanted me to read but the look in her eyes told me it was something that I should read. As soon as I saw the two words stigma and dementia, I understood. Her own condition had become apparent when she started to hear voices, supposedly through the exterior walls of the house, and also complaining of being left behind by unseen groups of visitors who were leaving to go to parties without inviting her to go along. There were also visitations by sisters and her mother who had all died many years before.

Stigma, however, was foremost in her mind when first she learned she had dementia. At first, it was the dread of others finding out that she had it; it was as though she felt ostracized from the world of normal people and would henceforth be something of an outcast. I remember that time, a couple of years ago, very vividly. Her whole attitude changed as she imagined people were talking about her because she was “not normal”.  There was a sadness in her eyes and frustration when I told her I couldn’t see these unseen visitors that she was seeing. Although she tried not to show it, there was a withdrawal as she wrestled with the discrepancies between her world and the “real world” as others saw it.

Associated with stigma came the fear of “being put away”. I was asked on a few occasions if she was going to be put into a home. This issue came up around that time because my cardiologist suggested, given both our advanced ages, that I get our names onto the Long-Term Home waiting list.  I realized that such a move might one day be inevitable, but had always maintained and still do, that we would live at home as long as is humanly possible.

I was already well aware of the dehumanizing nature of those places and felt that I would rather live in my home-made greenhouse than be put into one, but we were obliged to go and visit these homes and choose five or so that would be our choice when the time came. Oh, they might take great care of you, but it would be like taking care of a pet gerbil that needed to be fed and have its cage cleaned periodically. Whatever the gerbil itself wanted would be a last priority and, given Rosemary’s dementia and our combined love of freedom, I knew she wouldn’t last long in one of those places. I made sure she understood we were both going to live here at home as long as we possibly could, and she wasn’t going to be sent anywhere. That made a big difference in calming fears that the diagnosis and the unfortunate timing these visits had evoked.

Eventually, though, these fears resulted in a few attempts to run away.  Once, in the depths of winter, she unlocked the front door and walked out in sub-zero weather at 6 am in the morning. Although she had dressed herself in her winter clothes, she was going out but with no idea of where she was going. Luckily, a neighbour who is an early riser spotted her and after talking to her convinced her to go back into the house. I was still asleep, but he brought me up to speed a little later in the morning. It was a shock then, but dementia up close was something new to me at that time.

Sometime later, maybe a week or two later although I don’t remember anymore, she again took off on her own only to be brought home by another neighbour who found her staggering along the street in the snow early in the morning. Each time, she explained to me she was just going for a walk.  She likes to walk, but this was something different – I felt she was really “running away”. But running away from what?  First, I had to install a chain on the front door to keep her in, but leaving the back door with only its lock for safety reasons in case of an emergency.

I decided I would address the issue of dementia head-on. I wouldn’t try to ignore it or pretend to my wife that it didn’t exist.  Instead, I would discuss it with her, treating dementia as something outside of our normal day and give it an identity of its own. I labelled the unusual actions as the work of Miss Dementia. It was a first step in being able to discuss the subject unemotionally. My approach was multifaceted developing as we went along, sharing the new ongoing experience together. I can’t say for sure the exact order in which I introduced them, but following are some of the more important changes made in the best chronological order I can remember.

My first goal was to try and get her to ignore what other people thought. I was conscious that this stigma was real, but tried to convince her that what other people thought was not important. Easy for me to say, but it didn’t quite do the job. I read up on the subject a little and realized that dementia in seniors was really a consequence of aging. I explained to her that “dementia” was just another way of looking at the results of getting old. We are all a bit like the old family car (we don’t keep up with the latest models anymore!) Things start to go wrong as we get older. In one old car, the transmission may go, in others it’s the suspension, in others it may be something else but the bottom line is, it steadily deteriorates. Well, our bodies are like that. Some of us have brain hemorrhages and heart problems like myself, others may get cancer and for others it may be dementia.  It is nothing to feel ashamed of. In fact, I told her, if you can reach the age of 92 going on 93 you are doing better than most!

In the meantime, I became aware that one of my attitudes that I had to change. At first, I willingly took control of doing everything so that she could relax and be waited on, but gradually I realized that she didn’t want to be shunted into a corner just because there were so many things she couldn’t handle alone anymore. For example, for her own safety and after a few minor mishaps, I had to insist that she not use the stove and to let me do any cutting in the kitchen. (Our kitchen knives are pretty sharp.) She would always be offering to help but when I asked her to help with something she couldn’t remember how to do it or where stuff was stored.  My natural reaction was to say, “Sit down and I’ll do it.”

But gradually I realized that she needed to be needed. It’s probably true to say, she felt she was capable of doing more than she actually could but I had to encourage her to participate anyway, otherwise she would withdraw further from day to day living and “slowly die away in the corner”. She told me that she had worked as a dish-washer somewhere for over a year, but they had never paid her a penny. Anyone that knows Rosemary would realize how unbelievable that story was….unless, of course, one counted her days as an unpaid housewife. She kept on at me to let her do the dishes and when I gave in she took it on as conscientiously as if she was making $25 an hour. She was wanted, she was needed. It was another step in my education.

I learned pretty early that she couldn’t handle multi-step tasks; she could only handle one thing at a time.  Her short-term memory only permitted one thing at a time. Any more than that resulted in frustration and made her uncomfortably aware of her limitations. Anyone who that has written a computer program is aware of the necessity to specify every necessary action, each painfully slow step one at a time. The answer, of course, was to enlist Rosemary’s help by getting her involved with things, one step at a time.  For example, sautéing onions involved cooking them slowly and stirring the pot often. This was something she had done many times in her past, although that was all forgotten now. However, with just a few moments of instruction she caught on and did it comfortably and well.

 

There was an article in the Sunday Aug 9th Toronto Star titled “Stigma takes deadly toll on people living with dementia” written by Alisa Grigorovich and Pia Kontos which I might not have seen but for the fact that it was brought to my attention by my wife who, herself, has dementia.

She offered me the Insight Section of the newspaper opened to the article to read; as she did, I noticed a moistness in her eyes. At that moment, I didn’t know what it what was she wanted me to read but the look in her eyes told me it was something that I should read. As soon as I saw the two words stigma and dementia, I understood. Her own condition had become apparent when she started to hear voices, supposedly through the exterior walls of the house, and also complaining of being left behind by unseen groups of visitors who were leaving to go to parties without inviting her to go along. There were also visitations by sisters and her mother who had all died many years before.

Stigma, however, was foremost in her mind when first she learned she had dementia. At first, it was the dread of others finding out that she had it; it was as though she felt ostracized from the world of normal people and would henceforth be something of an outcast. I remember that time, a couple of years ago, very vividly. Her whole attitude changed as she imagined people were talking about her because she was “not normal”.  There was a sadness in her eyes and frustration when I told her I couldn’t see these unseen visitors that she was seeing. Although she tried not to show it, there was a withdrawal as she wrestled with the discrepancies between her world and the “real world” as others saw it.

Associated with stigma came the fear of “being put away”. I was asked on a few occasions if she was going to be put into a home. This issue came up around that time because my cardiologist suggested, given both our advanced ages, that I get our names onto the Long-Term Home waiting list.  I realized that such a move might one day be inevitable, but had always maintained and still do, that we would live at home as long as is humanly possible.

I was already well aware of the dehumanizing nature of those places and felt that I would rather live in my home-made greenhouse than be put into one, but we were obliged to go and visit these homes and choose five or so that would be our choice when the time came. Oh, they might take great care of you, but it would be like taking care of a pet gerbil that needed to be fed and have its cage cleaned periodically. Whatever the gerbil itself wanted would be a last priority and, given Rosemary’s dementia and our combined love of freedom, I knew she wouldn’t last long in one of those places. I made sure she understood we were both going to live here at home as long as we possibly could, and she wasn’t going to be sent anywhere. That made a big difference in calming fears that the diagnosis and the unfortunate timing these visits had evoked.

Eventually, though, these fears resulted in a few attempts to run away.  Once, in the depths of winter, she unlocked the front door and walked out in sub-zero weather at 6 am in the morning. Although she had dressed herself in her winter clothes, she was going out but with no idea of where she was going. Luckily, a neighbour who is an early riser spotted her and after talking to her convinced her to go back into the house. I was still asleep, but he brought me up to speed a little later in the morning. It was a shock then, but dementia up close was something new to me at that time.

Sometime later, maybe a week or two later although I don’t remember anymore, she again took off on her own only to be brought home by another neighbour who found her staggering along the street in the snow early in the morning. Each time, she explained to me she was just going for a walk.  She likes to walk, but this was something different – I felt she was really “running away”. But running away from what?  First, I had to install a chain on the front door to keep her in, but leaving the back door with only its lock for safety reasons in case of an emergency.

I decided I would address the issue of dementia head-on. I wouldn’t try to ignore it or pretend to my wife that it didn’t exist.  Instead, I would discuss it with her, treating dementia as something outside of our normal day and give it an identity of its own. I labelled the unusual actions as the work of Miss Dementia. It was a first step in being able to discuss the subject unemotionally. My approach was multifaceted developing as we went along, sharing the new ongoing experience together. I can’t say for sure the exact order in which I introduced them, but following are some of the more important changes made in the best chronological order I can remember.

My first goal was to try and get her to ignore what other people thought. I was conscious that this stigma was real, but tried to convince her that what other people thought was not important. Easy for me to say, but it didn’t quite do the job. I read up on the subject a little and realized that dementia in seniors was really a consequence of aging. I explained to her that “dementia” was just another way of looking at the results of getting old. We are all a bit like the old family car (we don’t keep up with the latest models anymore!) Things start to go wrong as we get older. In one old car, the transmission may go, in others it’s the suspension, in others it may be something else but the bottom line is, it steadily deteriorates. Well, our bodies are like that. Some of us have brain hemorrhages and heart problems like myself, others may get cancer and for others it may be dementia.  It is nothing to feel ashamed of. In fact, I told her, if you can reach the age of 92 going on 93 you are doing better than most!

In the meantime, I became aware that one of my attitudes that I had to change. At first, I willingly took control of doing everything so that she could relax and be waited on, but gradually I realized that she didn’t want to be shunted into a corner just because there were so many things she couldn’t handle alone anymore. For example, for her own safety and after a few minor mishaps, I had to insist that she not use the stove and to let me do any cutting in the kitchen. (Our kitchen knives are pretty sharp.) She would always be offering to help but when I asked her to help with something she couldn’t remember how to do it or where stuff was stored.  My natural reaction was to say, “Sit down and I’ll do it.”

But gradually I realized that she needed to be needed. It’s probably true to say, she felt she was capable of doing more than she actually could but I had to encourage her to participate anyway, otherwise she would withdraw further from day to day living and “slowly die away in the corner”. She told me that she had worked as a dish-washer somewhere for over a year, but they had never paid her a penny. Anyone that knows Rosemary would realize how unbelievable that story was….unless, of course, one counted her days as an unpaid housewife. She kept on at me to let her do the dishes and when I gave in she took it on as conscientiously as if she was making $25 an hour. She was wanted, she was needed. It was another step in my education.

I learned pretty early that she couldn’t handle multi-step tasks; she could only handle one thing at a time.  Her short-term memory only permitted one thing at a time. Any more than that resulted in frustration and made her uncomfortably aware of her limitations. Anyone who that has written a computer program is aware of the necessity to specify every necessary action, each painfully slow step one at a time. The answer, of course, was to enlist Rosemary’s help by getting her involved with things, one step at a time.  For example, sautéing onions involved cooking them slowly and stirring the pot often. This was something she had done many times in her past, although that was all forgotten now. However, with just a few moments of instruction she caught on and did it comfortably and well.

Another step forward in the kitchen was to reintroduce the concept of “mise en place”. It was actually a relearning of the concept because her memory of doing that at when she was younger was completely gone. So, when making petite quiche I would enlist her help and explain that she could help me by getting all the stuff ready. Of course, that immediately threw her into a panic because it was multi-stepped and she knew she couldn’t handle that, but by assuring her that I would call out the items one at a time she warmed immediately to the idea of being included.  Thus, “We’ll need the large green frying pan.” Where? Oh, in the drawer at the bottom of the stove, at the same time pointing to the drawer. “A carton of eggs; that’s right in the fridge. Yes, that’s right!” And so on. As the baking advanced, she would immediately wash any used pot, building on what she had learned doing dishes. She didn’t wait to be asked, she just did it. All of this helped her to feel needed. And then there was that wonderful moment when the muffin trays came out of the oven. Seeing the multi-coloured quiches cooked a beautiful golden colour would light up her face with pride, especially when I emphasized that we had made them together.

A bit further down the road, another change became apparent; not recognizing people she really knew very well before the memory loss became more pronounced. One of her cousins visited us, and my wife was as kind and friendly as could be and I suspected nothing amiss, but after the cousin left my wife asked who she was. It was an eye-opener for me, and I couldn’t help noticing how she nonetheless carried off the meeting so graciously; no puzzled looks or hint that she didn’t understand. And this didn’t happen just with her cousin; she would see someone else close like that and know that she knew them from somewhere, but had no recollection of who they were. Even after I would explain who it was, I had the feeling that she didn’t quite “get it”. Some of the grey cells had been irretrievably lost. At different times, it was my daughter and even her own daughter that she didn’t recognize. Using FaceTime daily, however, has taken care of Rosemary recognizing her own daughter, but nearly everyone else is still a blurred memory. But we would discuss these things, and I would tell her how Miss Dementia was always trying to mix her up. It was our job to push back and keep her in check.

“Nothing to be ashamed of, just like the family car we are all getting older and things are starting to go wrong. It happens to all of us. If you have made it to 92 going on 93 you are way ahead of the crowd; most people in their 60’s, 70’s and 80’s  never make it to 90. It’s not something to be ashamed of! Be proud that you have outlasted practically every woman that ever lived. There’s no stigma to achieving that longevity! If others can’t see that, then you’re ahead of them, too.”

Another important point to make, as early in the game as possible, was that the voices etc that she heard were as real to her as anything I might consider real in my own experiences. I could not hear or see her visitors (I told her they existed only in her mind and called them what they were, hallucinations!), but I had to understand that denying what she experienced dropped a curtain between us. She “knew” what she had seen and heard.  “You just don’t believe me!” she would say if I argued, or just smiled knowingly if I let it pass. But there were times when she would look at me and ask, “Dementia?”

In the early stages, I noticed that her “sightings” seemed to occur after sleeping or otherwise left alone for any stretch of time. It was in some respects like bad dreams or nightmares because of when they occurred; someone singing and calling out her name was a common one. In that case, I would agree that she heard it but would try to explain that it was in her head and that I couldn’t hear it, even if went with her to the bedroom. I would follow that up with a discussion of the thickness of the exterior walls and how it was impossible to hear someone singing through them, and then watch her as she struggled to reconcile what I had told her with what she experienced. All the while, I would emphasize that it was all occurring in her mind, and was as real to her as real could be, but that it defied a logical understanding.

Later came visits from her mother or her sisters. They would be visits that often seemed to me to be rooted in past experiences, unresolved issues that the mind was trying to settle. We would sit down and I would listen, trying to understand what her mind was trying to do. As to the reality of their visits, I would patiently explain that her mother and sisters died long ago, something that she would gradually realize as she came back into “the real world”. Meanwhile, these discussions were gradually overcoming the stigma issue and when something struck her as logically impossible she might say, “Oh, it’s my debenture, right?” Well, it wasn’t quite the right word but I knew what she meant.

The next phase, which has been a little more difficult for me to deal with, is her seeing me as two or three different people. I remember talking to her yesterday while I was at the computer in the basement. She had just woken from her nap and came down to the basement office to see me. We both had be upstairs with the IPad for our Facetime call to her daughter in the U.S. in about a half hour. I suggested that she go and make herself a drink and, okay, make one for me. (She didn’t like drinking alone – another example of a stigma, just a different kind.) Fifteen minutes later, I went up to the dining room and saw my drink on the table.

“Can I make you a drink?” she asked. I gasped because I could see the drink there on the table, already made and waiting for me. Once again, she didn’t identify me as the person she had been speaking to fifteen minutes ago in the basement office.

“You already made my drink!” pointing to the glass.

“No, that’s for …..” and her voice trailed off. She looked at me, puzzled.  There was a moment or two of silence as I let her mind work on it and then she looked at me and said,

“Debenture?”

“Yep, dementia.” and the subject was dropped. Her powers of reasoning were still working, albeit not as well as in earlier years, but they were working. It gave me a boost because I could see that keeping her involved in everyday chores, and living in general, was pushing worries about stigma into the background. Because of our discussions, now she understood better what was happening to her; she didn’t like it but she understood it better.  And enlisting her help in everyday chores kept her involved. She was no longer afraid of being shipped out to a long-term retirement home and what other people thought didn’t matter as much anymore. After all, hadn’t she helped me make the quiche? Just looking at the recipe one could see it was a big deal. She was regaining confidence in herself and was coming to terms with her “debenture”. And having a drink on her own wasn’t anything to worry about either! Two stigmas given a kick in the pants! She smiled……her beautiful, happy smile.

There is much more I could write about the surprises that living with dementia brings, but my immediate task was to give her my feedback on the Toronto Star article. Without repeating what I have just written, suffice it to say that I went over our experiences as outlined above until her smile was back again. She was loved, there was no fear of being “shipped out”, she was still useful and the back garden looked, “Oh, so pretty!  I think I’ll go out and lie on the chaise longue for a while!”

I’ll probably send a copy of this to Alisa and Pia. I think, in our small way, we are doing some things right. More importantly, it will be great if they can bring about their suggested improvements in the long-term facilities.  Their article said it all, and Rosemary was smart enough to recognize that.

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