Tango on? I don't think so.

From an article in the New York Times: http://health.nytimes.com/ref/health/healthguide/esn-alzheimers-ess.html

Alzheimer’s is roaring down — a train wreck to come — on societies all over the world. People in this country spend more than a $1 billion a year on prescription drugs marketed to treat it, but for most patients the pills have only marginal effects, if any, on symptoms and do nothing to stop the underlying disease process that eats away at the brain. Pressed for answers, most researchers say no breakthrough is around the corner, and it could easily be a decade or more before anything comes along that makes a real difference for patients.

Meanwhile, the numbers are staggering: 4.5 million people in the United States have Alzheimer’s, 1 in 10 over 65 and nearly half of those over 85. Taking care of them costs $100 billion a year, and the number of patients is expected to reach 11 million to 16 million by 2050. Experts say the disease will swamp the health system.

The advice is painfully and ironically reminiscent of the 1960s and ’70s: go with the flow.
- If a patient asks for her mother, for instance, instead of pointing out that her mother has been dead for 40 years, it is better to say something like, “I wish your mother were here, too,” and then maybe redirect the conversation to something else, like what’s for lunch.
- If Dad wants to polish off the duck sauce in a Chinese restaurant like it’s a bowl of soup, why not?
- If Grandma wants to help out by washing the dishes but makes a mess of it, leave her to it and just rewash them later when she’s not looking.

Pull out old family pictures to give the patient something to talk about. Learn the art of fragmented, irrational conversation and follow the patient’s lead instead of trying to control the dialogue. Basically, just tango on. And hope somebody will do the same for you when your time comes.

From me to this advice: Tango on, my ass. You presume I am a caregiver, and aspire to being a more effective caregiver. Not so. I want a legally enforceable Condition Of Life Agreement available to every American. And death panels to stop pouring resources into disastrous and terminal end-of-life situations.

Doggie distractions

Mom in quiet good spirits today. She is receiving her mail again, and there was a cute post card (picture of a momma duck with baby duck) from Wende and a long letter in a card from Donna. We talked a bit, mostly about the postcard and letter, but also about trees turning red and gold.

In the social circle, mom couldn't pull her attention away from the letter. I don't know how much she understood, but she was totally absorbed in the typewritten page for a very long time. I shared the picture with the other ladies, one at a time - I hold it up in front of them, then watch their face change as the sweet photo registers in their mind. They all melt when they see these wonderful animal pictures Wende has found on postcards.

Then the dogs came in. Little tiny dogs, two of them, bouncing for joy and touching each lady on the leg or foot, testing to see if they are welcome. All the ladies are fascinated, watching every move. Except mom - she's reading the letter. Finally a dog came up to sit on her lap, and she turned over the letter to me to focus on the dog.

Notice I keep referring to the ladies. Bill, the only male member of the group for the last several months, is gone and now his room has been cleaned and emptied. Over 100 years old, he held on until his family could be with him. The Activity Ladies were very involved in his dying, but the ladies around the circle seem unaware of such changes in the group's makeup. Doggie distractions assist this, as does loss of memory.

Incarceration follow-up + Going Postal

Interesting both comments on the "Incarceration" post assumed it was a "her". In fact, it was a guy. His whole quote in his first email to me was, "Can I ask you a question... this whole memory ward thing... why couldn't you do this at home? Why is it necessary to incarcerate and drug your mother?"

Whew. I crafted a response and we had quite an email dialogue for the whole day. I haven't heard back after that day's volley of communications. Perhaps I should share the whole thing I wrote back to him? It really gave me pause - I wanted to be rip-roaring mad, but I just wasn't. It seemed a genuine question. So I told him why I don't have her here at home.

Wende's postcards have not been arriving. She's sending, but now I'm finding them in mom's room - cards I have never seen. Nobody knows how they got there. Wende has notified the Post Office - they even gave her a case number. And they're going to get back to her this week. We're hoping nobody goes postal, but we're also kind of bothered that these cards, which give me a way to talk about Wende and whatever the picture on the card is about, when I'm visiting mom. Keep you posted.

Incarceration

It's the season when my clients realize the end of the year is nigh and they have some serious results to produce. So I'm busy.
And our book is high on the list of business books again this month, and there are programs to develop and market. So I'm busy.
And the conference I chair every May in San Francisco is gearing up with 15 team leaders and all their documents and planning to coordinate. So I'm busy.

This made sitting in mom's community circle today almost painful. I lugged a bunch of dirty laundry out of her closet, then sat with her and the ladies for as long as I could stand it. The old man (101 years) is apparently dying in the room right off the social circle - the Activities Lady put on some music in his room so we didn't hear his gaspy noises (she said she hopes his daughter, who will arrive from CA tomorrow, gets there in time).

Mom was drifting in and out of sleep while I was there, but I didn't want to leave and have the Activities Lady know what a creep I am for not spending more time with my mother. I made it to 25 minutes then bolted.

Someone asked me last week why I "incarcerated" my mother and didn't keep her at home. Yipes. Shoot me first.

Death Panels - An Idea Whose Time Has Come

Excerpt from Sarah Palin’s Statement on the Health Care Debate, posted on her Facebook page on Friday, August 7, 2009 at 1:26 pm:

And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil. Health care by definition involves life and death decisions. Human rights and human dignity must be at the center of any health care discussion.

I googled "death panels", curious after today's visit to the Chute to find out where the term came from and why everybody is so opposed to the idea of end-of-life decision making. I found the above Sarah Palin quote, and read several related reports.

It seems we are so fearful of conversations about death that we bring up highly charged accusations and stories to deflect them. Each person embraces his or her life in a different way. I have a friend who came home from war in a wheelchair, paralyzed from the chest down. He went to law school, got his law degree, and has led a fruitful career and personal life contributing to organizations that support the disabled in both the US and in Vietnam. He chose to embrace his life circumstance and get the most out of his earthly tour of duty. I once had a client in a similar physical situation who wanted only to have enough control of her hands to open a bottle of pain pills so she could take an overdose and end her personal tour. She was not allowed to do that.

Who the hell do we think we are, that we tell people they cannot chose?

I am well acquainted with my mother's quality of life and her living environment - well enough to say that if I am ever in a state that requires similar care, I would like someone to open a bottle of pills for me and help me exit my tour. I am considering dedicating some resources to establishing a legally valid personal exit policy that people can deploy to state what conditions are acceptable - and not acceptable - for the end of their lives. Something, perhaps, that would be evaluated by a death panel to support the implementation of my decision.

Making spirits bright

Mom was not wearing her ever-present headscarf today - not the Islamic kind, but a scarf she has worn for most of her adult life to conceal the serious balding she had (which was due to having pulled her hair back tight for the first part of her life, causing it to get very thin, and which was then aggravated by the perpetual scarf). The scarf covered the front and top of her head, now completely hairless, and seeing her without it is always surprising.

I thought maybe an aide had forgotten to put it on her this morning, so I went to her room and picked out a scarf from the basket in her closet that would match her outfit (pink today). Then the Activities Lady told me mom is pulling the scarf off, and keeping it in her lap. Sure enough, she had a scarf on her lap.

She seemed fragile and resistant, somewhat down, and it took much encouragement and steering to get her from her lunch table to the sitting circle. She sank into her chair, and I took a seat too. The Activities Lady had to go get her flu shot, so I said I'd take over until she returned.

I told the ladies that I had stolen the wool shirt I was wearing from my husband's closet. I elaborated on the story, and got mom laughing, which made her look stronger. Then I said that Jeffrey had planned to golf yesterday, but it was too cold. So not only did he not get to play golf, but I was stealing his clothes away too. Mom was delighted, and said, "That poor man." We all enjoyed feeling sorry for Jeffrey (and admiring my wool shirt), and by the time the Activities Lady came back, everybody was in good spirits.

Then the dogs came in! Two little Corgies on leashes with the Dog Lady who would have them do tricks and just be adorable. I took that opportunity to leave, but it is probably the first time I came away from the Chute in higher spirits than when I came in. All is well.

Career guidance from inside the Chute

Mom was intently digging into the last of a baked potato when I arrived today, carrying one of the sweaters she had knitted many years ago. I found it during my weekend's closet-cleaning project, and ran it through a dry-cleaning cycle in my dryer. The yarn was heavy and very soft, and as the days get cooler I thought she might enjoy it.

She stopped eating when she saw me, which fortunately was at the end of her lunch (I try to time it for after a meal, not before, or she'd never eat a bite). And she reached for the sweater, just to handle the fabric of it. She's a real knitter - give her some yarn and she's deeply engrossed in its texture and heft. I just let her enjoy it until she returned her attention to the fact that I was there too.

Later, when it was time for me to return to work, I told her I was going back to my office for a phone call from someone who wanted me to do a job for them. I said I didn't know if it would be a good job for me or not, but I would have to decide today.

I looked at her and said, "Should I do it?"

She was quiet for a moment, and I wasn't sure she had heard or understood, but then she said, "Yes."

I said, "Okay, I'll do it." Then, just for a tease, I added, "Because I always do what my mother tells me to do."

That got a laugh and a head-shaking from her. She remembers perfectly well who the "bad daughter" was in our family, and it's good she can laugh about it now!

Gotta go - have to tell my new client that we'll be working together. Because my mother said so.