Fear of Alzheimer’s and having an important conversation

We don’t always watch TV together at our house anymore. New technology probably made this inevitable. We had only one TV in our house for the first dozen years of our married life. That was by design. We figured with just one TV we would have to share more and talk more. It was, and still is a good plan.

But then we got a tablet. My wife Roselee gave me an iPad for my birthday six or seven years ago. Because I used it only sporadically if at all, she commandeered it. A couple of years ago she began streaming shows she liked, things like “The Great British Baking Show.” She also started watching reality programs from Australia about dancing. She streams dozens of programs new and old. I would guess Roselee has probably seen the series “The West Wing” at least eight times from the first to last episode. I have little doubt she knows all the words to fictional President Bartlet’s fifth State of the Union address.

Meanwhile I sit across the room and watch LeBron James do incredible stuff with a basketball and monitor old reruns of the 1970s cop comedy “Barney Miller” on a TV mounted above the fireplace.

Whatever works.

On Sunday April 22, though, we sat together through an episode of the CBS news magazine show “60 Minutes.” One segment held us hostage from start to finish. It probably still does. It was about a couple now in their 70s. The wife was diagnosed with Alzheimer’s 16 years ago. Dr. Jon LaPook began documenting the lives of Carol and Mike Daly in 2008. At that time Carol was still very active but dealing with a fading memory.

And then an informative story turned into something far more terrifying. When it was over, I turned to Roselee and she turned to me. In a flash that only longtime couples can fully own, we knew without saying out loud: “We’re having a conversation about this now.”

* * * * * * *

The first definition of Alzheimer’s calls it a type of dementia impacting memory and growing worse over time. But that really only tells a fraction of the story. It is a heartbreaking and soul-crushing disease that creates not only a victim in the person who has it, but all of those around them.

Mamie

Among the last photos of my grandmother. She’s with my grandfather on the deck of the log cabin at my mother and father’s house in around 1983. It was their 60th wedding anniversary.

My first encounter with Alzheimer’s was when my grandmother began to have a fading memory in the late 1960s or early 1970s. She was forgetful but in small ways. She was born in 1900 and a physically strong woman used to work and difficult circumstances. Over time she became confused. One year we found wrapped packages on Christmas Eve in the freezer. She deteriorated gradually but surely. She couldn’t remember how to cook things she had made since she was a little girl. Then she failed to recognize my mother, her sister and brothers. She became angry and lashed out in often ugly tones. Ultimately she began to believe her husband, my grandfather, was her father. In her last few years she could do very little beyond sitting up. Conversation was impossible. Her descent took a toll on my grandfather and everyone before she passed away in 1983 or ’84.

Back then they called it senility.

My mother, of course, watched this unfold with a growing sense of alarm. Then and now it’s believed that family history plays a role in development of Alzheimer’s in individuals. According to Alz.org, a website dedicated to Alzheimer’s research:

Research has shown that those who have a parent, brother, sister or child with Alzheimer’s are more likely to develop the disease. The risk increases if more than one family member has the illness. When diseases tend to run in families, either heredity (genetics) or environmental factors or both may play a role.

My mother has expressed fear of developing Alzheimer’s disease for much of the last 40 years. Today at age 86, it continues to be a topic of discussion on nearly every visit home. it came up again on May 13, Mother’s Day. She is becoming forgetful, but it’s not uncommon for someone of her age to have some slips. What she does manage to remember is mind-boggling. Over the years she’s trained her mind to remember “speck in the rug” details about things she encounters, appointments with doctors, work done at her house to maintain the lawn, paint, wash windows or cut down trees. She recites these things in highly repetitive stories that are built-in mechanisms she’s developed to have the best recall of events and details. These days the things she doesn’t remember can probably be traced more to hearing loss than anything else. She reads the newspaper from cover to cover every day and probably has a better grasp of current events than at least half the younger people I encounter each day. Sometimes she doesn’t fully understand enough about today’s culture to know why things happen, but she’s very aware of what occurs. She lives alone with help a few days a week from my brother and someone who comes in to help her maintain the house. For 86 she’s well above the average. But still after age 85 the odds of developing Alzheimer’s are much higher.

So she worries. Even though she has prepared for that event with precautions like nursing home insurance, she worries. And I get it.

I get it even more after watching the “60 Minutes” report. The story isn’t so much about Carol Daly’s decline, something compelling by itself. The focus is on the devastating impact on Mike, her husband of 53 years and primary caregiver for 16 lonely and grueling years. Mike is a retired New York city cop who tells LaPook that caregiving is the toughest job he’s ever had and added that the situation had him thinking of suicide. LaPook says this is not uncommon.

This is how the story ends.

So now, despite years of telling us he wouldn’t put Carol in a nursing home.

Mike Daly: I’m comin’ to the to the point where maybe a nursing home is, is the answer for her, her safety.

Ten days after that, and 53 years after their wedding day, Mike did put Carol in a nursing home.

Dr. Jonathan LaPook: Do you still love her?

Mike Daly: I love Carol who was Carol. But now Carol’s not Carol anymore.

When Carol was still Carol, that would have been the best time to discuss the kind of caregiving decisions Mike Daly eventually had to face alone. Mike hopes that sharing such intimate details of their lives will help others be better prepared than they were.

In the time it took for “60 Minutes” to cut away for a commercial we had the conversation. As I approach age 59 I can feel my own memory starting to fade at times. A couple of months ago I had to think hard behind the wheel of my car in order to remember how to turn on the windshield wipers. That was a first and it hasn’t occurred since, but it made me think. It made me consider what might be ahead.

I turned to Roselee as the “60 Minutes” report concluded and said simply, “If this happens to me you put my ass in a nursing home and don’t think even a half-second about it. I’m not kidding.” I made her promise. Then she said much the same thing. And I promised in return.

Let’s hope we never have to discuss it again.

 

 

 

 

 

7 thoughts on “Fear of Alzheimer’s and having an important conversation

  1. My mom had Alzheimer’s. The day I placed her in a nursing facility was more difficult than the day of her physical death. I have similar thoughts and can relate more than you know. Thanks for sharing this.

    Like

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