This is part of an ongoing series by John Mark Schofield about being a caregiver for parents dealing with Alzheimer’s and Parkinson’s Disease. Other entries in this series:
The Elasticity of Memory II: Honesty in Dealing With An Alzheimer’s Patient
My father says my mother hallucinates, but I don’t think “hallucinate” is the right word. It’s not as if you’re with her and she sees people who aren’t there. Instead, she remembers things—sometimes very vividly—that never happened.
At first, these were visits from people she knew—her father, her sister Greta, old friends. It was easy for us to tell these things weren’t real—her father passed away 20 years ago, her sister hasn’t left Denmark in 30 years, and her friends weren’t visiting either.
She’s come to accept that these things aren’t happening—though initially she had to call Denmark before she believed us that Greta wasn’t here in the States. More recently, she remembers things that are harder for her to verify on her own, so she asks my dad and me about them.
Once she called and asked me if I’d had a bunch of friends over last night. I don’t live with my parents and hadn’t been there the night before, but I had been there for lunch that day. Their next-door neighbors, Daniel and Tatiana, had also come over with their daughter Priscilla to visit for a while. Once I was sure Mom wasn’t talking about Priscilla and her parents, I knew this was another “dream memory,” and told Mom so.
“Well,” she replied, “your dad says the same thing, so I guess they weren’t really here.”
Later I asked her about these memories. “Today we talked about Daniel and Tatiana and Priscilla coming over yesterday, which did happen, and about a bunch of my friends coming over last night, which didn’t happen. Is there any difference between those two memories for you?”
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“Oh, yes!” my mom replied. “They’re very different. When your friends come over, it’s like a Swedish movie. It’s just dozens of young girls flitting around in white dresses. They’re very nice and don’t cause any problems. They’re just always moving around the house. I just assumed they were your friends.”
In some ways my mother is in the most difficult part of dementia. She’s losing her reality—her ability to tell fantasy and imagination from reality—but she’s still alert and thoughtful enough to know it’s happening. At first this hit her very, very hard.
The hardest hit was also one of the most mundane. We were in the doctor’s office, and she needed to give a urine sample. She had gone to the restroom before we left the house, so the medical assistant gave her a paper cup full of water, intending for her to drink it. My mom brought the cup back—empty—and somehow that got transmuted in her mind to her giving a urine sample. And no matter how much my father and I tried to convince her that she hadn’t given a sample yet, she stood firm. It wasn’t until all the nurses in the office and the doctor confirmed that she hadn’t given a sample that she realized she was mistaken.
This simple error shook her much more than thinking her dead father was visiting. She could no longer trust the evidence of her eyes and ears and mind.
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All of this raises thorny questions about the nature of reality that I don’t feel qualified to talk about. Our eyes and ears and other senses are the instruments we use to model the world in our own heads. But the brain is an instrument as well, and when it’s not working correctly, it doesn’t matter how sharp your vision or how sensitive your hearing. When the instruments we use are imperfect, so is our perception of our world.
I’ve discovered that this concept completely unnerves me. Not only because of the obvious impact on my mother, but also because I’ve become aware of my attachment to my own rationality and ability to perceive the world accurately. I’m a student of Buddhism, and I’ve found the knowledge that all things end to be a comfort during such difficult times. I’ve come to accept the inevitability of death—but this is rubbing my face in the likelihood of my own loss of awareness before death. It will take much more meditation before I come to accept that.
My mother grew up in a small farming village in Jutland, Denmark. It’s the kind of place that people in Copenhagen make fun of, filled with people that city-dwellers think of as ignoramuses with funny accents. She went from there to an elite boarding school near the capital, and eventually from there to America, where she met my father, earned a master’s degree, taught in high schools and colleges, and had a son.
A voracious reader of newspapers, news magazines, and books, she’s always been proud of her academic ability. Lately, she’s come to terms, at least a lot more, with the fact that she can’t trust her own brain or her own perceptions. It no longer seems to shake her so deeply when she finds her memory at odds with reality. She even jokes about it now—when I offered to take her to the public library, she said there’s no need: “The best part of Alzheimer’s is that you can read the same book over and over again and not mind.”
She sometimes gets frustrated—more so on good days than bad—for example, when she asks me five times in ten minutes if I’d like steak for dinner (I’m a vegetarian) and then realizes how many times she’s asked the question.
On bad days, though, she doesn’t realize it—she just asks again and again—and this actually seems easier for her. Alzheimer’s is a disease that may actually get easier for her as it progresses.
I’m very thankful for one thing: The Alzheimer’s doesn’t seem to be changing the basic nature of my mother. She’s losing her reality, but she’s not losing herself. She actually seems to be getting sweeter, more gentle, more loving, and more able to express that love as the disease progresses. Even her fantastical memories are of people she loves coming to visit, or of friendly young people filling the house.
At least for now, she’s still the mother I love and the mother who loves me. And I’m going to treasure that for as long as it lasts.
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ABOUT THE AUTHOR: John Schofield is the director of information technology at Dakim, Inc., and, as such, is a key leader in Dakim’s development of the system and software versions of Dakim BrainFitness. In this blog, he shares his only-child experiences as the sole caregiver of aging parents living life with neurological disease. A version of this blog entry was originally published July 19, 2010, as an essay on John’s personal website.
Thank you for sharing your experience. It is always nice to hear that there are still people enjoying the positive moments and time they have with those suffering from dementia as so many people become angry or bitter instead. However, as I was reading through your story, the description your mother gave of your “friends” resounded with the experiences I have had with clients who have Lewy-Body Dementia (LBD) and very little with that of those I have had who are afflicted with Alzheimer’s. While it is common for Alzheimer’s sufferers to have delusions of persecution or paranoia, reporting “seeing” others is more typical of LBD as is having conversations or visiting with relatives or loved ones. What we think of as experiencing a visual hallucination may not be how they themselves act or respond to these “memories” and so we may not think of them as actual hallucinations.
While not a physician in any capacity, I was wondering if you had ever explored the various dementia types or discussed this with her physician as they are often react differently to the typical “memory” medications. Again, thank you for sharing- your mother has raised a wonderful son!
Comment by Ali — November 12, 2010 @ 10:16 pm
@Ali — Thanks very much for your comment, Ali! I really appreciate the tip — I wasn’t aware of Dementia with Lewy Bodies before your message. After studying up on it, I don’t think my mother’s symptoms fit it, for a few reasons:
1) She doesn’t seem to have the pronounced fluctuations in alertness and attention — her cognitive abilities seem to be on a slow and steady decline, and she doesn’t have frequent drowsiness, lethargy, or time spent staring into space.
2) Other than a slight tremor associated with periods of anxiety, she has no Parkinsonian symptoms.
Still, you’ve given me something I’ll bring up during our next appointment with our neurologist, and I greatly appreciate the kind words and the suggestions.
John
Comment by John Mark Schofield — February 11, 2011 @ 9:53 pm
Thanks for posting this, John. My dear age-84 wife acts some like your mother, not quite so far along. She occasionally hallucinates scenes where I refuse to take her to fun places with me. As for the repeated questions, people repeat things for me when I can’t hear them, so I repeat things for her when she can’t remember them. My objective is for her to be happy and for me to be happy with her. Any notion that something might be wrong with her brain is very upsetting to her. Since we can’t cure it, I see no need to diagnose it. She centers herself by thinking of our 2 dogs and a cat. The love she feels puts her in “the Vortex” (Abraham) or “Bliss” (Buddhism?) Your write-up gives me perspective and a good feeling about our love, yours for your mother and mine for my wife.
Comment by Jim Conant — March 8, 2011 @ 5:31 am
@Jim — Thanks very much for your comment! I really like what you said about your wife centering herself with your pets. That’s a hugely underestimated way of calming oneself and bringing joy to one’s life. I’m glad they’re able to give her that feeling of being in bliss or being “in the Vortex.” Good luck in your journey, Jim!
Comment by John Mark Schofield — March 8, 2011 @ 8:09 pm