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May 10 2009

I almost forgot to write this Alzheimer’s post

Yes. I’m laughing at Alzheimer’s. Again. And, again, I must state that I do so only because it’s better than screaming through clenched teeth or trying (and failing yet again) to swallow that lump of panic and fear in the back of my throat, or sticking my fingers in my ears and LALALAing as loud as I can. None of those work, so I laugh. It’s healthy. Increases oxygen, ups the blood flow, reduces stress. Or something like that.

Being a contributing writer for Rocky Mountain Moms Blog has its pretty cool perks. On Thursday I had the distinct honor of sitting in on a conference call with Maria Shriver about her Alzheimer’s advocacy. Yes, that Maria Shriver: Ahnold, the Kennedys, the whole shebang. She is a charming and delightful woman; actually thanked us for making the effort during carpool time to sit in on the call. Um, nooo, the pleasure is totally mine.

Did you know:

  • every 70 seconds there is a new diagnosis of Alzheimer’s
  • 70% of Alzheimer’s patients are kept at home
  • 76%  of caregivers are non-compensated women (family)

Tonight on HBO a new four-part documentary begins, titled The Alzheimer’s Project. This was the basis of the conference call on Thursday, to get the word out about this series. It covers Alzeheimer’s from the inside (as a patient), from the point of view of caregivers, how to discuss the disease with kids, and the research for a cure. HBO is free on DirecTv this week so I’m Tivoing the episodes to watch this week, but they’re also available through those links above.

I’m looking forward to watching this series. I know I’ve mentioned it a few hundred times, but Alzheimer’s Disease runs in my family. My dad’s mom probably had it, but the official diagnosis was just general dementia. I begged my mom for as much as info as she could remember, and though it was really, really difficult for her to recall her mom’s descent into Alzheimer’s, she came through for me. My Gram had 12 siblings that lived to at least young adulthood. Five died from Alzheimer’s (others from heart disease, strokes and alcoholism). Those five were also the last to go, so who knows if the others would have been diagnosed with it had they lived longer. From the conference call I learned that early onset Alzheimer’s is hereditary, but not late onset. I seem to recall Gram’s “loop” of stories getting shorter about the time Tom and I met in 1993; she would have been 71 then. That would probably be considered late onset…but I still worry about the strong family link, even though Alzheimer’s is showing more because we’re living longer.

Watching my Gram suffer through Alzheimer’s was hard. Watching my mom and my uncles suffer through Gram’s Alzheimer’s was heartbreaking. Eventually she got to a point where she didn’t know what she didn’t know and was content. Give her a cold iron and a basket of towels and she was happy as a clam. No joke, the woman used to iron underwear and my cousins’ basketball uniforms. My mom and uncles however…I  believe that Alzheimer’s is the only disease that is considerably harder on the families than the patient. They remember, they know the change. And they smile while their hearts break a little more with every visit.

There are no Alzheimer’s survivors. There are no patients walking around in remission. There is no cure. It is a fatal disease. Chew on that for a minute. The best we have right now are some medications that can slow the progression. I don’t get a sense of urgency from society about this disease, and I suspect that’s because it’s viewed as an old person’s disease. Nothing could be further from the truth. It’s a young person’s burden. It’s also a woman’s issue because the burden of care and the negotiating of the medical systems usually falls on women. It’s a disease that impacts savings, jobs, a person’s present and future as it sucks away the past. Do you want your children to spend their lives-and their life savings-taking care of you? I laugh about my sons choosing my nursing home, but no, I don’t want that. I know my parents don’t want that either. The Baby Boomers are getting older and with the advances in health care over the last several decades, they’re going to live longer. The Alzheimer’s population is going to grow by great numbers.

So now what? Watch the series, either on HBO over the next few days/weeks (it’s being repeated several times). Get involved. On the conference call, Maria Shriver intimated that there may be an Alzheimer’s walk in October, in conjunction with The Women’s Conference in California. Lobby your senators and congresspeople for additional research dollars. This disease is going to affect every one of us soon, either as caregivers, family members, or patients.

In the meantime, sit and listen to old stories from your older relatives. Write them down. Video or audiotape them. Those oft-repeated tales are family gold. I remember so few of them until I hear them told again (and am proud that my sons’ antics are already being told and retold to great laughter). I live for family stories, they are the knots that tie us together. They’re going to be lost unless we make a concerted effort to record them.

Before someone’s short “loop” turns into an irreversable decline.

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4 comments

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  1. RC

    My great-grandmother had Alzheimer’s, and sadly, as she was originally from Germany, we were unable to understand most of what she said after a certain point – she reverted back to German.

    I miss her and am happy I knew her for a little bit (even though I was young) before her diagnosis and the progression of the disease.

  2. Merrily

    My mother has had it for at least 11 years – it is a terrible thing to watch. DO NOT want to go that way. thanks for the 911 on the HBO series.

  3. mrsvierkant

    Well, RC told you about our Great-Grandma. It was so hard to watch our Grandmother struggle with taking care of her. It was hard to watch Great-Grandma decline. I have friends who are losing/have lost loved ones to this terrible disease.

    It is devastating.

  4. Cathy

    thanks for the info–it’s interesting how looking back you can see a can see a disease or disorder run in the family even though at the time your relatives didn’t know about it. For me, it’s autism–I think my grandfather had asperger’s but no one knew at the time.

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