Tag Archives: Alzheimer’s

Looking at Dementia with a Different Lens

Early in life, teachers would look at me and say, “Huh? You think what?” I don’t know why my perspective on things seems so odd to other people, but it has helped me find silver linings in the tough process of caring for my mom. Then a recent story about a woman with Mild Cognitive Impairment (MCI) or Early Stage Alzheimer’s helped me see how a patient could also use their unique point of view to help them deal with challenges posed by the disease.

Between the Pond and the Woods

Living Positively with Mild Cognitive Impairment” paints a portrait of Toni Hamilton, a woman who has adopted a valiant approach to her illness. The article describes the ways she has changed her schedule and her expectations of life, so she can deal more calmly with memory problems as they arise. Many of the changes she embraced grew out of her experience in a Cognitive Fitness class where she met other people dealing with the same diagnosis and similar symptoms. From the start, Toni took a pro-active approach to the disease by learning meditation techniques that helped her manage the stress created by her illness (and life, in general). The class also helped her set up a daily routine that includes yoga, brain games, walking, and other healthy habits that may help to forestall the advance of more serious problems. 

In the article, Toni admits that she “wants to know what’s going on….and not be patted on the back by someone saying…’you seem perfectly normal’…” She has also expressed her fear of “not knowing when changes occur.” Though her lifestyle changes have helped her to stay upbeat, she remains afraid that she won’t realize what’s happening if she slips into Alzheimer’s.

The full text of the article, written by Barbara Overholser, appears in InSight, a publication of the Penn Memory Center.  Full disclosure: I sometimes write articles for InSight and the Penn Memory Center. Though I didn’t write the one described here, I had the pleasure of interviewing Toni last summer for a different project. What impressed me most about her was the fact that she seemed to be drinking life’s full cup of happiness in a situation that might knock others into a state of depression. As I see it, this is the true benefit of developing your own, custom-made perspective on life. It’s very hard to ignore the ugly things we know about Alzheimer’s when dealing with the early stages of memory decline. But Tony shows us that it is possible to embrace the good in life even when we feel threatened by what could happen in the future. 

If you are scared about what you see happening to someone you love, read this article and see if Toni’s story offers something to help shift your perspective. In her conversations with me, she said she doesn’t know where she is “on the symptom spectrum” but she doesn’t worry. She used to be an “Olympic quality worrier” but she knows that medically she is in the best hands and she can’t let worry steal her happiness. In my opinion, Toni also provides an example of Olympic quality courage.

Dementia and the Struggle to Communicate

It used to happen occasionally, but now almost all of my mom’s speech comes out garbled. If I walk up behind her when she’s zoning out, it sounds like she’s speaking an alien language. My standard reply is: “Yes, of course.”

Smoke on the Water

Foggy morning, Henning Pond

“Of course” is one of Mom’s favorite expressions. It’s a phrase she likes to hear from me. But most times I have no idea what I’m affirming when I say it. I try hard to understand her crazy words from context, but when she gets that distant look in her eye, I don’t know what part of her galaxy she’s discussing. My sister thinks our mom is remembering old conversations. She’s heard our mother mention the names of her siblings when she’s in these trances. That may be true at times, but more often I find myself  scanning the room, trying to discover what’s prompting her talk.

Mom’s language sounds like the babble of children who speak before they know words. They point at things, their eyes light up. Their sincerity animates every little thing they struggle to say. And my mom is a very tiny lady who can be cute as a three-year old when she starts telling you one of her stories.

She makes me remember when I was a little kid. I think I became a “writer” when she gave me my first crayons and some blank construction paper. The letters of the alphabet were still a mystery to me, but I had my own set of scribbles that I used to create “words.” My stories were mainly about Blackie, the puppy we had when I was still too young for school. She listened while I “read” her the symbols she couldn’t decipher, completely unaware that she was launching a career.

Mom’s stories today, however, are not about puppies and I’m afraid that I could misinterpret her. What if she’s trying to tell me about a problem or a pain? She’s still got dental issues that we don’t know how to treat — and her sluggish digestive tract is a chronic preoccupation. There might be other matters, too, that we haven’t noticed and she can’t explain to us.

The master reference book for caregivers, The 36-Hour Day, recommends that caregivers ask specific questions to try to narrow communications down to their simplest form. Authors Nancy Mace and Peter Rabins suggest pointing at body parts and asking, “Does this hurt?” or “Do you hurt?” instead of using a more general question. They also observe that people with dementia communicate better when they are relaxed. So it’s important to appear calm (even if you’re not) and make it easier for them to express important thoughts.

When in doubt, I use the hug method if I feel I haven’t gotten the true gist of her words. The slow, simple hug is 100% effective at settling her down. Once she is calm, I can tell more accurately if there is something weird provoking her. Hugs are basic human medicine that can be administered anytime, at no cost. They help many dementia patients relax enough to communicate. Imagine where we’d be if drugs ever achieve that kind of success rate.