World Alzheimer's Day

World Alzheimer's Day

Yesterday, September 21, I am told was World Alzheimer's Day.

I didn't really know about it beforehand. Thought it was interesting though that it coincided with the 2nd anniversary of my dad's death. I don't know that I would have done anything differently had I known.

We are now told that more than 35 million people suffer from Alzheimer's or some other dementia worldwide and that number is about 10% greater than what was predicted a few years earlier.

By 2030 the number is estimated to nearly double and by 2050 a staggering 115 million persons are projected to have the disease.

After two years I find I have very little confidence in The Alzheimer's Association or any government or even any medical practitioner. That's not really a change in my confidence level from my caregiving days mind you. Actually I had zero confidence then and I still have zero confidence.

It is like those commercials for depression drugs that warn you that one of the side affects of the drug is depression. Then you learn that people that are depressed that are taking the drugs are still depressed. Not exactly a ringing endorsement.

On the other hand I am skeptical of these projected numbers, too.

There is an entire industry that grows up around diseases. I receive various kinds of advertisements for M D Anderson as well as one of our local hospitals and Cancer Centers of America. I like the latter because there is this one "doctor" that tells a "patient" that she has no "expiration notice."

Alzheimer's well on it way. It takes a lot of specialized people and facilities and so on and it is a disease that makes us all fearful.

Maybe I'm turning into an old cynic.

The Alzheimer's Project

I've been watching the HBO Alzheimer's Project films all morning. It is Monday as I write this, the day after Mother's Day.

It is raining now and has been nearly all night. When I went out to Judy's farm this morning the pasture road was really muddy. Even slow going threw mud all over the side of the car. It is funny to me that the mud is black for a while but the more rain we get the redder the mud becomes.

It is not funny that the weather mirrors my mood as I watch these videos. The longer I watch the more I feel like I am suffocating from the memories of my own time caregiving for my parents.

Every video, every person, every situation, every place all conspire to raise old memories long since buried but not very deeply it turns out. Mostly I would just as soon those memories stay forgotten I guess. I am surprised I feel this way and did not expect it.

Yesterday morning I was already melancholy for a while. I avoided church. Not because I did not want to worship but because I really did not want to be around other people. I didn't want to be reminded that my parents are gone and I am still here. I drove over to the cemetery and stood there in the plot that has 6 of us already. Didn't do anything - just stood there - and thought about each one of them. Maybe I gave a bit more thought to the women in honor of Mother's Day.

Mom has been gone 8 years this year and my grandma will be 21 and my aunt who was like a mother 22. I walked over to my other grandparents' graves and realized she's already been gone 24 years. Then I went to find my ex mother-in-law's grave because she also was a mother to me. I didn't put out flowers. It was raining anyway. But I counted how many I need to buy for Memorial Day and I will put them out then.

Then last night I watched an older X-Men movie on TV. I followed that by watching the HBO video about Caregivers. I chose that one first for some reason. I could not help but think about how like the X-men are both those of us with dementia and those who try to care for them. Irony?

This morning I began again by watching The Memory Loss Tapes. My blogger friend, Annie from Maple Corners, is in that one. I wish I could say it was good to see her and her mom but it would be a lie. I recognized her instantly of course and her mom. It was painful for me to watch though. But I made myself watch all of it.

I have to stop watching right now. I am not sure I can watch more. I want to. I wanted to write about how great it is that these videos exist and I wanted to like them just as everyone else has commented about them. Maybe I will like them later but I don't right now.

I want to go throw up right now.

My son is in the next office. He can hear the audio though. I just told him I thought I was going to puke. He said he thought he might, too. He said he wasn't sure he could watch these.

One thing I can tell you is that a few minutes of video footage does not and maybe cannot communicate what it is like when the minutes turn into hours and the hours become days and the days fall into weeks and the weeks grow into months and the months accumulate into years.

I don't know if I will post this.

It is Monday afternoon now. I am home from feeding the horses and checking on Judy's mom. She reminds me so much of one of the women in the memory video.

The videos are very honest and very real. They are well produced with very high production values. But they are raw, too. RAW is the right word I think.

I did not know I was still so raw myself but apparently I am. I really thought I was more healed. I really thought these stories would not bother me so much.

I decided to post as you can see.

A Good Alzheimer's Article

The following article was in my local paper on Thursday. I thought it was very good and worth sharing. I did not receive permission to post it so if the paper or the author or someone complains about it I will remove it. The headline is linked to the original article. Also I omitted an image but otherwise is pretty much copied in its entirety.

Helping Oklahoma City Alzheimer’s patient uncovers worries for the future
‘Drawing on Memories’ art class hits close to home
By Carrie Coppernoll
Published: April 2, 2009

I knew her name.

"That’s my mother’s name,” I said.

We sat shoulder to shoulder, facing the paints and brushes, in the dining room of an Alzheimer’s ward. About a dozen patients and this woman with wispy gray hair came for a Drawing on Memories art class sponsored by the Alzheimer’s Association.

I volunteered along with the nursing home staff to help the patients paint Mardi Gras masks. The masks will be sold at the Masque in Black & White gala, a fundraising dinner for the Alzheimer’s Association.

The woman looked at me with gray eyes and a weak smile and asked if I would paint for her. Of course, I told her. She introduced herself again. I figured she forgot my name and was too embarrassed to ask. I introduced myself again.

Sharing our lives

She chose the colors — pink and blue — and she told me where to paint. She painted a bit herself, but she was too tired to do it all alone. She kept introducing herself, and we kept having the same conversation. We talked about our families and our jobs.

Every time she introduced herself, we started our friendship again, and every conversation was a draft I could edit. As we painted, I discovered she wanted to talk about her daughters but not her husband. She liked remembering her childhood but not the lonely room at the nursing home. She asked me to be her roommate. She asked me to come back to visit. I agreed because it made her happy and I knew she would forget.

She introduced herself over and over. And every time I would say, "That’s my mother’s name.”

That’s my mother’s name.

My mother’s name.

Will this be my mother?

My grandmother lost her battle to Alzheimer’s when I was in middle school. The disease still haunts our family. We analyze forgetfulness, wondering whether it’s normal or a sign of something sinister. Each of us secretly worries we too will be swallowed up by the vast emptiness of the disease.

I left the table and cried.

I came back and she introduced herself again. "That’s my mother’s name,” I said. She smiled.

When I volunteered to help at the Alzheimer’s unit, I knew I would see my grandmother’s face among the women here. I didn’t imagine I’d see my mother. Or myself.

Contact Carrie --Email: ccoppernoll@opubco.com

Oklahoma Alzheimer’s patients can help test new drug

Oklahoma Alzheimer’s patients can help test new drug

Article in The Oklahoman by Susan Simpson - March 10, 2009

The web site for the study is http://www.icarastudy.com/

The drug is called Bapineuzumab, or Bapi. It is supposed to fight beta amyloid formation.

About 2,050 participants, 50 to 88, are being enrolled at some 200 sites across the US and Canada for the 83 week long study. Your patient has a 40% chance of getting a placebo. You have to attend 15 study events and have 6 infusions.

Sad Stories

One day last week I read (on my Kindle 2 of course) an AP story carried in the local paper about a Minnesota man, Verne Gagne. Verne, who just turned 83 on February 25, has Alzheimer's (or possibly some other dementia) and was involved in an altercation with another resident of his facility on January 26.

The other man, Helmut Gutmann, was 97 and subsequently died on February 14 from his injuries. He also had Alzheimer's.

Mr. Gagne was a well known professional wrestler before his memory loss. Neither man remembered what happened after the altercation.

Mr. Gutmann's death was ruled a homicide but the authorities declined to charge Mr. Gagne.

One of my blogger friends posted an entry on the same day.

Here is a link to an AP story about the incident.

The very next day I read an article in our local paper about Mr. Lester Pendegraft, 94, of Norman, Oklahoma being charged with rape. Mr. Pendegraft was living in an Edmond, Oklahoma nursing home when the rape occurred. He was stopped by attendants but the family of the victim was not immediately notified. The daughter contacted a victim rights group that was able to get the police involved and charges were filed against Mr. Pendegraft.

Mr. Pendegraft was moved to a Norman nursing home where he died on Monday, March 2nd. Authorities have dropped the charges.

In the second incident the ailment of either party (I find it hard to make myself write perpetrator) is not reported. It is obvious from the report that both people were suffering from something.

I thought that no matter what Mr. Pendegraft had previously done in his life, and I do not know anything about him; and, no matter who all had loved him; and, no matter who all he had loved; that all of that would now be forever eclipsed by the record of this one act near the end of his life.

That's bad enough without even considering the very real possibility that Mr. Pendegraft, had he been in his right mind, would be terribly grieved of his own action.

My father would have been mortified had he done something like that, if he had his right mind which he did not. And make no mistake about it I think that is a very real possibility had I placed him in a nursing home. That was one of the reasons I so stubbornly refused that option in fact.

Or he could have been like either Mr. Gagne or Mr. Gutmann. Both of those men now will be remembered for something nearly incidental to their history except that one man died and another caused it.

I think I shared before that one of the fears I had with my dad was that he would be away from me and some policeman or citizen would shoot him or hurt him because of his inability to control his own actions.

I had not thought of any of these things for a good long while until I read these two articles.