2 Good Articles

“Letting Go: The valuable lesson Sandra Day O’Connor has taught us about Alzheimer’s,” by Patti Davis
http://www.newsweek.com/id/70463

“Nursing Home Infidelity Bittersweet but Common” by Rebecca Dube
From GlobeLife at Globe and Mail, Nov 15, 07
http://tinyurl.com/2h62zc

Echo …

For the past couple of weeks or so, Bob has been having echolalia. That’s where a person repeats a word or phrase over and over. For example, he’ll say, “Yeah” about once per second, five or six times. “Yeah … yeah … yeah … yeah … yeah … yeah,” and then stop for a while.

I did a net-search for the condition and found an excellent ARTICLE about how to handle repetitive behaviors.

After reading the advice given in the article, when Bob was again repeating “Yeah,” I talked to him reassuringly, letting him know that I know it’s hard for him now to get the words out, but that I’m always watching out for him and everything is being taken care of, that he’s in a safe place, and so on.

He struggled with some words and then said something about having botched something. I told him it’s okay, that I’ll help him get it done right, that we’ll do it together, that it’s okay if it’s not done perfectly. A look of relief relaxed his face, and he said, “Thank you.”

Caring for a person with severe AD requires that you anticipate their needs and meet those needs to the best of your ability without wearing yourself out. In our case, I’ve found that when I explain things to Bob, it reassures him, even though I know he can’t quite follow what I’m talking about.

All human beings crave caring, comfort and connection, even more so when we feel small, scared and unwell. Just knowing someone is on your side can make a big difference, even to a person with severe AD.

The Pain of Clarity

 F A D I N G 

A couple of evenings ago, Bob said, “Everything is fading away.” Then he said, “I don’t know how much longer I can take it.”

Moments of clarity like these are painful for him, of course. Those of us without
the disease can’t begin to imagine what it’s like to actually sense the deterioration of the brain. I sure hope I never have to know.

 

Living in the “Now”?

Some spiritual advisors/leaders/etc. admonish people to live in the “now,” which can be helpful. However, people with Alzheimer’s are living in the “now” all right, but it’s a miserable “now.” It occurs to me that without our memories, without our past, without the integration of our past into the present, there really is no “now” in which to truly LIVE. Bob’s “now” contains no way to know where he is, no way to recall most of his life’s events and accomplishments, no way to remember a lot of the people that he would most surely want to remember and be in touch with if he could. He has lost himself in the most fundamental way. All of the advice out there about how to live one’s live flies out the window when AD enters the picture. Bob had a beautiful life; I wish he could remember it.

One Good Thing At Least

About three weeks ago, almost all of Bob’s anxiety and paranoia suddenly lifted and has been minimal to non-existent ever since. His anxiety had started three years ago this month and had been severe most of the time since its inception. Because the anxiety and paranoia have greatly diminished, I’ve been able to dramatically reduce the dosage of the pills he takes for anxiety and paranoia (and hallucinations) and eliminate another one entirely. He still sleeps/naps a lot, but seems more relaxed now that he’s far less anxious. In the evenings, he often still has a little bit of anxiety and sometimes some paranoia, which is common among people with AD. It’s called “Sundowning” when it occurs in the evening.

“I want to die.”

Late this morning when I was taking Bob to the bathroom, he said, “I want to die.”

Imagine yourself in a situation where you feel totally confused, you do not know where you are, you don’t know why you’re being asked to do something, you don’t always know who your loved ones are, you’re not even sure who you are. On top of all that, you don’t feel well, you feel worn out, exhausted.

No wonder he said he wants to die.

End of Going Out

In September 2006, Bob fainted in the checkout lane at the grocery store. It was a clear signal that going out had become too much for him. (I had to get him out twice after that episode for health care appointments – wasn’t easy for him.) Since then, I’ve had sitters for him, and in August of this year, I enrolled him in hospice, so now we’re getting much needed extra help. It’s a lonesome feeling going grocery shopping and running errands without him. I’d rather be home with him, but “they” say it’s good for caregivers to have breaks. “They” are right, of course.

“It’s hard for an old man.”

A couple of days ago as I was helping Bob up from his chair, he said, “It’s hard for an old man.” He’s right, it is, especially in the severe stage of Alzheimer’s.