Saturday, August 27, 2011

Like a rhinestone cowboy ... and a short little Italian guy

I read about Glen Campbell in Rolling Stone last night. I knew he had been diagnosed with Alzheimer's, but I hadn't read much about him in recent years. If you know who Glen Campbell is, or if you care about someone with Alzheimer's, you'll want to pick up a copy of the magazine. (You can't read the article on Rolling Stone's site without a premium-access pass.)

The cause of my dad's death in March was congestive heart disease, but he also had dementia. That diagnosis had caused some slight strife in my family; he had been seeing a doctor who had diagnosed him with Alzheimer's, but to most other health-care professionals, and to some family members, including me, he really didn't fit the criteria.

Everyone, though, was comfortable with the fact that he had experienced some cognitive failure, and other physicians' diagnosis of dementia seemed to be something we all could live with.

I cried as I read about Glen Campbell last night, as so much about his story is so familiar. He's younger than Dad was when Dad began experiencing confusion, but the disease seems to be manifesting itself in much the same way. Campbell still recognizes friends and family members; my dad did as well, till the day he died. But Campbell also obsesses over small things and seems to be imagining problems that aren't really happening. That was my dad, in spades.

The Rolling Stone writer observes and writes about an instance in which Campbell becomes agitated over an air conditioner. He determines that the temperature inside his house is too cold, and then goes searching through the house, loudly and in all the wrong places, for the offending appliance.

His wife mentions that Campbell won't allow himself to be calmed by reassurances that the temperature is fine, and that the air conditioner isn't where he's looking for it. So the rest of the family ignores the chaos occurring upstairs and carries on with the interview.

Our life with Dad was much that way the last couple of years. Most of the time, he was lucid and on point and appropriate in his conversation and behavior. Sometimes, though, he veered so far off into left field that none of us knew how to respond. His wife bore the brunt of the behavior, but my sister and I witnessed much of it as well and tried to help as best we could.

Here's the most challenging thing about dementia: People tell you to ignore the behavior. But when it's your loved one slipping into Whack-a-Doodle Land, that's hard to do. (And I don't intend any offense with that term. As you know if you've cared for or helped care for someone with dementia or Alzheimer's, there are times you have to laugh.)

During Dad's last few months until his last 10 days, he was cared for at a place called Edgewater. As he grew sicker, his dementia seemed to become more pronounced. One day, for example, he became convinced that his wife and my sister had sold his house and were going to move in together and put him in a nursing home. Another day, he was convinced that his dog had died and no one would tell him the truth.

He accused me of hiding all the clocks in the room, then changing the time on them. And when we moved him into Kavanagh House, he sat in a recliner and held court with staff and visitors, telling everyone that his wife had bought the hospice facility for $60,000 and moved everyone into it, which was a "stupid move because none of the rooms are joined together."

And a hallmark of people with Alzheimer's or dementia: As Dad's reality blurred, he seemed to become unable to let go of the things he believed to be true. He hung on to the story about selling the house until the day before he died. At times, he was angry with all of us because of things he believed we had done wrong.

Another aspect of the Campbell story that takes me back: Campbell's daughter says Campbell becomes agitated when a favorite washcloth is folded the wrong way and in the wrong place. I usually was with Dad in the evenings, and I'd help prepare him for bed.

The belongings on his bedside table, especially when he was hospitalized, had to be in a certain order. His bedsheet had to be untucked at the bottom. His pillow had to be fluffed just so. It was nothing for him to call me back into his room four or five times to ask me to move his watch a few centimeters or unfold his blanket just so. When the preparations became especially long, Dad would rub his head and say, "Oh, my God," over and over, or "This isn't right." Those were the especially difficult nights.

What do you do when this is happening to someone you love? You pray the medication works. And when it doesn't, you laugh sometimes because you have to -- and often because you're so exhausted that you're hysterical. And you cry. A lot.

The article says Campbell hasn't yet lost his musical prowess; similarly, my dad certainly didn't relinquish all of his intellect. His acuities slowed, as those of elderly people often do. But in the year before he died, he occasionally solved math problems and conversed rationally about politics and the economic downturn.

According to his family, Campbell hasn't accepted that he's been diagnosed with Alzheimer's. Dad never talked about the fact that he had dementia, but he knew something was a little off. He'd say or do something, especially during the times he was hospitalized, then look at me and chuckle. "Why did I do that?" he'd ask.

I remember watching Glen Campbell on TV when I was little, and his song "Wichita Lineman" has always been a favorite of mine. (Shut up -- in the Rolling Stone article, Tom Petty and The Smashing Pumpkins' Billy Corgan say it's always been one of their favorites, too. So, ha.) I didn't much care for "Rhinestone Cowboy," his biggest hit, but I respected that the guy was a top-notch musician. (And he was also, to a girl of the '70s, pretty cute. Check out the end of this post.)

So his diagnosis, along with that of Tennessee women's basketball coach Pat Summitt, has been startling. But we'd better get used to the feeling; as our public figures age, we're going to be seeing more and more of them impacted by cognitive impairment. According to the Alzheimer's Association, Alzheimer’s is the fifth leading cause of death in the United States among people 65 and older.

My family was lucky; my dad's dementia didn't cause him to wander or hurt himself. But when I think back over the last few years, there was nothing sadder than seeing him confused and upset because his brain just wouldn't work the way he wanted it to. In some ways, we lost him, or parts of him, before he died.

I feel for Campbell's family members, and I admire them for coming forward. And I hope these recent high-profile diagnoses will motivate people to open their hearts and checkbooks and support research to cure something that could, before it's all over, rob so many of us of our abilities to do the things we take for granted every day.

1 comment:

  1. That's too bad about Glen Campbell. Alzheimer's and dementia are heartbreaking illnesses. My father-in-law passed away from Parkinson's, but developed dementia 2 years before his death.