By the time that most people reach the age of 50, according to experts in the field, they will begin to be affected by the issue of memory loss. By the time these same people have reached the ripe old age of 75, most will suffer some degree of memory loss themselves and will have at least two family members or other loved ones who are dealing with the issue, often in its more severe form known as dementia.
For those of us in the final fifteen percent of our lives, memory loss in ourselves and our loved ones isn’t the exception: it’s the rule. I’m typical of people in this age group. In my youth, I had a very good memory. Foolishly, I was amused by people who had to make lists in order to remember what they needed to do. Today, my memory could best be described as mediocre, and karma has caught up to me for the lack of compassion I showed to people with less-than-perfect memories. Currently I have five different to-do lists, one for financial tasks, one for household tasks, one for outdoor tasks, one for work-related tasks, and one for . . . Opps, I forgot what the fifth one is. I’m now the person providing amusement for the youngsters as I work on my to-do lists. In an attempt to find humor in an annoying situation, I have a coffee mug making fun of the fact that my brain in full.
As is also typical, I have a close relative, my older brother Pete (see photo), who has serious memory issues. Pete has had Alzheimer’s disease for the last seven years and his current memory loss is severe. I also had another loved one, my late husband Bill, who suffered from moderate memory loss. What the statistics don’t mention is that most of us in this stage of life also have in excess of 50 casual friends and acquaintances who are also subject to memory difficulties.
I have always believed in trying to be completely honest. It’s a goal of mine to be able to have that level of integrity, but it’s a goal that I have, on many occasions, failed to meet. I also feel that when I’m dealing with someone who suffers from dementia, I need to be especially honest and communicate openly about everything. But I’ve been presented with several situations recently that left me struggling to try to find a way to best handle the needs of that person with dementia while still being completely honest. I’m going to talk briefly about two recent incidents that left me questioning how I could have better handled the situation and I’m hoping some of you who read these posts can offer me some suggestions on how I might be able to do better next time.
The two situations I’m going to talk about cover extremely different types of incidents: one of these incidents can only be described as tragic and the other is downright ridiculous. I’m going to start with the tragic one so that you will still have the ridiculous one coming to give you a few laughs and cheer you up. The tragic incident involves my brother, Pete, the relative I just mentioned who suffers from advanced Alzheimer’s disease. A few years ago, when Pete was still in the moderate stages of Alzheimer’s, he came to spend two weeks with my husband, Bill, and me.
His wife of nearly 50 years had died about six months earlier after a brief illness. Pete’s eldest daughter, Lynn, was his primary caregiver and she had warned me that Pete had trouble remembering that his wife had died. She said she had to remind him of it frequently. As I learned on the first day Pete spent staying at our home, the word “frequently” was a huge understatement.
During the morning of the first day, Pete asked me in excess of 20 times where his wife was. When he asked me that question, I gave him the answer that his daughter had told me she used to respond to him. It was difficult for Lynn, who had lost her mother when Pete lost his wife, to have to explain to him over and over that she was dead and then answer his questions about how she had died. Who could stand being reminded that often every single day about the death of a beloved mother? In addition, each time she told the story to Pete, he re-experienced all the grief and shock that he had suffered at the time of her death. Lynn did not want to repeatedly inflict that level of pain on her father.
Lynn had asked me to tell Pete that his wife, Hong, was visiting her family in Vietnam and would be back in a few weeks. I understood fully Lynn’s reasons for preferring to give him this response to his questions. It may have conflicted with my desire to be honest but I agreed to go along with her wishes willingly. The first 20+ times Pete asked me where Hong was, that is the response I gave him. I observed however that Pete appeared more and more upset at that explanation as the day went on. Although each time he asked me where Hong was, he clearly had no memory of having already asked me that question many, many times, I now suspect he must have had at least some sort of partial memory of the earlier explanations.
When I asked Pete if he was upset that Hong had gone to visit her family, he told me in a grief-stricken voice, that he thought she had been gone a long time and that maybe she didn’t love him anymore and wasn’t planning to come back home. I don’t understand how Pete could have the feeling that Hong was gone a long time and yet seem surprised each time I told him again that she had gone to Vietnam. But I could tell by his expression and his voice that the idea that Hong might not choose to come back was just as terrible for him as the idea that she had died. As I watched my brother suffering, my first instinct was to lie again and tell him that she hadn’t actually been gone for long. As I considered that answer, I realized how many more lies it might lead to and I decided not to start down that route.
So I told Pete the truth. It took a long time to explain to him what illness had caused her death, when the death had occurred, what had happened afterwards, and all the other details that he couldn’t remember. Pete cried as I told him and I could see that, on some level at least, he was shocked by the news. We talked for nearly an hour and Pete did not start to recover from his grief until he began to talk about what was happening to Hong now. As he spoke of how happy he was that she was no longer suffering and how happy she would be at seeing her family again, especially her parents and grandparents, Pete became a bit more cheerful and for at least 20 more minutes he didn’t ask me where his wife was.
But then he did ask me again and I realized that I could not spend the next two weeks telling this story to my brother over and over again. I tried my best to keep him busy and distracted in an attempt to maximize the amount of time before he asked that dreaded question again. By the end of the day, I was exhausted from the effort and from the strong emotions invoked by watching my brother become upset over and over. I knew I had to come up with some kind of solution before morning. So here is what I did: because Pete noticeably improved each time he thought of his wife and how happy she might be in heaven, I got this very bizarre but also wonderfully effective idea.
As you can see in the series of three pictures attached to this paragraph, I used my questionable Photoshop skills to find a way to visually and thus quickly give my brother the most important piece of information right up front. I looked through my database of family photos and found a picture of my youngest granddaughter, Emily, taken when she was a baby. She was dressed up as an angel and had a pair of beautiful angel wings. When I found that picture, I started looking for a good picture of my sister-in-law, Hong. She was notoriously camera shy and I had very few options but I used the image from the middle picture in the series of three. I ruthlessly cut my brother right out of the picture, flipped Hong horizontally, gave her an angelic-looking dress to wear, and cut-and-pasted her over the top of my lovely granddaughter thus making it appear that I had a photograph of her after she had died and gone to heaven (or at least as heaven-like a place as my Photoshop skills allowed).
I made a nice print of my Frankensteined picture, stole a beautiful frame off another picture, and had it ready by the time my brother woke up in the morning. Then I presented the picture to my brother. Of course I first had to explain to a man who couldn’t remember why it was that Hong was in heaven but I think my efforts had some degree of success. Pete seemed to accept the explanation more readily, asked for less clarification, and recovered his good spirits more quickly after he saw the picture. He carried it around with him constantly for the next two weeks. (Fortunately he never asked how it was that I had a picture of her in Heaven.) When he got busy doing other things, like having dinner, and put the picture down for a while, we had to start over with the explanation when he saw it again. But it brought the number of times he had to hear the news down to a more tolerable number. I emailed Pete’s caregiver, my niece Lynn, and told her what I’d done. She said she would try using the picture as well.
As much as I’d like to put a happy ending on the tragic tale above, the best I can do is say that the problem finally resolved itself. Over the next year, Pete forgot that he ever had a wife. He also forgot he had a sister by then too. There are no words to describe the emotions you feel when your loved one looks at you without the slightest hint of recognition in that look. The happy ending will come some day, probably in the near future, when Pete is able to let go of a body with a badly damaged brain and, with his spiritual memory intact, is able to rejoin his wife on the other side.
Okay, enough sadness. At this point we all need a good reason to laugh. This next story involves my late husband, Bill, a smoke detector, Jiminy Cricket, and a stepladder. It begins like this. One morning in February, I woke up to the sound of a little chirping noise. At first I was afraid that a cricket might have gotten into the house. Although I have no problem at all stomping on spiders I find inside my home, I always feel I have to take crickets in my hand and carry them gently back outdoors. I blame Walt Disney and that movie with the cricket. Now if you’re as old as the average reader of this column, Jiminy is the cricket that will come to mind. But my daughter tells me that there is a newer Disney movie called Mulan and it features a cricket as well so clearly the next generation will find it hard to stomp on crickets too.
When I walked down the hallway, the mystery was solved. I realized the chirping was coming from my smoke detector. We have a very high ceiling in the hallway. I knew the only way to stop the chirping was to replace the batteries in the smoke detector but it was obvious that I would need a ladder to reach it. When I put the ladder in position, I could tell that I would have to stand on the top step to reach the smoke detector. My sense of balance isn’t quite what it used to be (not unlike my memory) and I knew the smoke detector would continue to chirp for at least 24 hours before it quit altogether. I decided to wait and change the batteries the next morning when my daughter was scheduled to visit. I was blatantly counting on the fact that she would take pity on the old lady and offer to change them for me.
I have a finely tuned ability to ignore little things like a chirping sound. This ability was developed during the years when I needed to finish my education while caring for my three small children. I can tune out anything but the sound of blood gushing or bones cracking. Well, that might be a slight exaggeration but a little chirping is certainly no problem for me. Unfortunately, it turned out that the same was not true of my husband. The smoke detector let out its chirp once every two minutes. Within two minutes of the time Bill got out of bed, he asked me what that awful noise was. I tried pleading deafness and claiming I couldn’t hear anything (another lie) but Bill wasn’t buying it.
I then explained to Bill what was causing the chirping, showed him the ladder, and discussed my decision to wait until the next day to change the battery. Bill immediately insisted that since he was taller, he could get up on the ladder and get the smoke detector down. Bill said this while leaning heavily on his walker, dragging his oxygen behind him, and preparing for the hospice nurse to stop by and visit. Needless to say, I gently declined his offer. Bill’s dementia was considered moderate at this point in his life. This meant that my entire explanation of what the noise was, why I wanted to wait to fix it, and why I didn’t want Bill to do it for me, was completely inaccessible in Bill’s brain within the next 10 minutes.
I held out for telling the complete truth through approximately 27 explanations and then I cracked! Apparently I still had Jiminy Cricket in my brain because the next time Bill asked what that noise was, I had a completely different answer. “I don’t know,” I said. “Do you think a cricket might’ve gotten in the house? Maybe we should find it so we can put it back outside.”
I know! I know! It was a total lie. But it only took a minute to explain and then it kept Bill busy for hours looking for the cricket. You can see how easy it is for me to abandon my goal of being an honest person in the face of a ridiculously annoying situation. In both of the cases I’ve just cited, for a time telling a lie appeared to make things easier. I was pleased to be able to drop the lie and implement using the picture to make the truth more palatable for my brother Pete’s situation. The picture may not have been a work of art but it did the job and it reduced the amount of pain he was experiencing. Frankly I think the inspiration I had to create the picture was a gift from God. I don’t know what I would’ve done if that idea had not come to me. But claiming the chirping noise might be a cricket was an outright lie told to make my own life easier. There is a big difference between the two extremes. I can justify the first attempt to lie because I was trying to reduce my brother’s pain. I can’t really justify the cricket story. It was for my convenience alone.
I would really love some feedback from those of you who have experienced this type of situation and might have some advice for me and the other people who read this blog. Where do you folks draw the line when it comes to complete truthfulness? Is it possible? Also, I think the brain loses its connections and can’t retrieve a memory in a case of dementia, but if the spirit still has access to memories once it leaves the body (and I hope it does), where is the actual memory kept and am I correct in thinking it still exists? I wonder if this might help to explain how and why a lie may be perceived, to some degree, by a person with dementia in the way my brother sensed that his wife had been gone a long time. I wonder if others have observed this phenomena.
When I was caring for my late husband and had to go on an errand without him, I used a large poster my daughter made that had a picture of me next to a picture of our local supermarket. I would place it in Bill’s walker so he could easily see it. There was no point in telling him where I had gone when he wouldn’t remember it. With the visual proof that I had only gone to the market, Bill didn’t worry about where I was and didn’t need to ask his temporary caregiver where I had gone. But I used the sign when the errand was a trip to the bank or to a restaurant for lunch with a friend too. Does that count as a lie? I sometimes think it is the intention behind the statement or action that makes the difference but other times I worry that is just an attempt at justification.
I am certain of one thing however. It is so difficult and emotionally draining to care for someone with dementia that I would never criticize a caregiver for resorting to a lie if the intention was to reduce pain or suffering. It is probably time to adopt that compassionate attitude toward myself and stop stressing over where I chose to draw that line between truth and fiction.