MARCH 25, 2012 7:58PM

Alzheimer's Disease: How You Can Help

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Tom, Dick, and Ron 

Here are three of my brothers.  I have two more.  Tom, the one in the chair used to be a paratrooper, a millwright, a father, a husband, a big brother to eight siblings, and my surrogate father--although he's only a decade older.  Now Tom cannot walk or use the toilet without assistance.  He cannot make his needs known verbally, so sometimes he acts out.  My brother is a shadow of his true self.  This picture was taken last fall, just a few weeks after my son and I made the ten hour drive to visit.  Dick, the grey haired one pushing the wheelchair is six years older than I.  He flew from the east coast so that he and Ron, the Tony Orlando double, who is four years younger than I, could make the twenty hour drive from California to Canada.  We are trying to do what we can to support my sister-in-law, who has spent the last decade caring for Tom on her own.  Last fall, when Tom's needs and his violent outbursts made it impossible to keep him at home, his wife did as many of us had been urging her to do--she found him placement in a care facility. 

AD is in our DNA.  Our maternal grandfather and two of his sons, our uncles, had the disease.  Our mother and sister died too early and were not diagnosed, but I suspect they were in the early stages of AD.  A maternal cousin and several other members of the family succumb to AD.  The rest of us are waiting, watching for signs.  Some of us pray, some of us try to think positively and get on with our lives.  Some of us contribute financially and some of us try to block out the whole sad story.

AD is in the DNA of many of you, and I have some suggestions for you in the following paragraphs.  On April 2, I am volunteering at the McGinty Conference in Portland, Oregon.  The perk is that I can attend the conference for free.  I hope to gather more knowledge about the latest research on AD so that I can share what I learn with family members and other interested parties.  I'll post again on this topic later, once I have assimilated what I learned.  In the meantime, please consider the following:

 Dr Michael Weiner, ADNI (Alzheimer's Disease Neuroimaging Initiative) principal investigator and participant, tells us, "The biggest hurdle in Alzheimer's is finding enough volunteers for studies--like ADNI--to allow the research to continue a the pace needed to be successful against this 'silent epidemic.'"  Dr. Weiner is not only a researcher, he, like me, is a volunteer participant in the study at OHSU (Oregon Health Sciences University) in Portland because he has a family member with AD.  Did you hear him?  THE BIGGEST HURDLE IS FINDING VOLUNTEERS FOR STUDIES.  There are studies all over the country. You can use one of the websites below to find one close to you.  Volunteers who come from AD families can be especially helpful in research studies.

 Not all AD research studies have the same protocols or requirements.  Dr. Weiner's ADNI study at OHSU is the largest and most comprehensive AD research study of its kind.  ADNI 2 is now helping to identify the earliest signs of AD, when brain damage begins.  

For me, there are perks to being a subject in the ADNI research project.  The blood work, MRIs, CATs, lumbar punctures and other tests that are part of the ADNI study are free, and my doctor has access those records.  I am also paid a small amount for each invasive test and mileage.  However, the biggest perk is feeling that I am doing something to help fight this insidious disease that takes a toll on the entire family.  It may be too late to do much for my brother, but this research may help others, especially those closest to me, those who share my DNA.

 The following sites as reliable sources of information:

a. Alzheimer's Disease Education and Referral (ADEAR). An authoritative source of articles on AD, caregiving and research, emphasizing government-funded activities.

b. Alzheimer's Association.  The leading non-profit organization supporting AD research and care.  The web site is outstanding, with up-to-date reports on the demographics and science of AD, including risk factors, diagnosis, treatments, research and financial/legal/insurance issues.

c. The leading site for scientists working in the field with links to the huge number of AD-related research papers published in scientific journals, articles summarizing the latest developments, and various tools that support collaborative research.  While much of the material is technical, it provides a fascinating look at the disease from the perspective of the research community.

Source:  ADEAR Center

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I'll look into this in NYC. It's heartbreaking. My mother has dementia, but I understand that is different, and none of my four grandparents had the disease. I leave for my mother's 90ty birthday this week. Every time I see her now it's a mixed blessing based upon how much of "her" is left, but she still can rally on occasion and sing us Frank Sinatra songs--only they make us all weep remembering when she sang them to us when we were small.

Much sympathy and support.
This strikes me as my grandfather may have---and they just didn't know--=suffered in similar ways. rated.
Thank you. I did mention that my mother and grandmother had dementia. It is a fear. Just had a neighbor die of a diagnosed Alzheimers. I will re-read and keep this information. So sorry that you and your family have to go through this. Please keep us posted. I want to learn as much as I can.
Ben, Jon, Ande: Thank you for taking the time and the kind words. Cancer was the disease of the 20th century. It appears that AD will be the most devastating disease of the 21st.
I know what you guys are going through. I have AD coming at me from both chains of my DNA spiral... it goes back four generation that I know of from both sides of my family. My father has already passed, my mother is in the final stages and last year I assumed control of my older brother's finance, legal and medical affairs.
I've given some thought to participating in clinical studies but I'm a hundred miles from UCLA and USC...

I wish you all strength and patience.
Jmac: Sometimes I feel like the field mouse flipping off the hawk as it dives toward me. What choice do we have but to fight or, at the very least, piss off the attacker. Strength and patience to you as well.
Important post, beauty. You know I understand, although I shy away from the idea of a lumbar puncture, having had a neck injury that almost resulted in spinal surgery. You may want to attend the Alzheimers Advocacy Forum in DC--in April or May -check the Alz Assn. website for more information. I went last year with a fellow caregiver/friend and it was very informative and empowering.
This disesase isn't in my family, but I've written about the fact that I now ha ve friends who are still here but not here. It is very commendable that you have decided to undergo these studies in order to gain information that may help, not only you, but others who have or face this nightmare. R
Erica: I thought of you and JMac in particular as I wrote this piece. I believe there are other studies on AD that don't require invasive tests. I am sure we each do what we can. You are doing your part already with your mother.
Rod: Thank you for stopping by and for your support.
beauty, Here is a link to the advocacy forum:
Erica: Megwich. We are in this together.
Yes, we are. Sending hugs.
I need this information. My father died of Alzheimer's, and we felt somewhat helpless at first, as he slipped farther and farther away from us. And I know research is changing the way it's treated, which is something I want to be up to speed on for future reference. This post adds to my knowledge base, which may come in handy later should my daughter find that she has to care for me, as we cared for my father. Sending love and light...and my gratitude.
Keka: It is frightening. I will have to rely on my kids if AD comes for me. I hate the idea of putting that burden on them. HATE, HATE, HATE it so much I am trying to figure out how to get around what may be the inevitable. I am so damned independent it hurts at times. The thought of becoming dependent, as my brother is, is too much. I cannot be a burden to them. So I fight, the only way I know how. I certainly understand your feelings of hopelessness. All I can do for my brother is visit when I can and make him foods that my mother used to make for all of us....banana bread, chicken and dumplings, chocolate cake, etc. I can see by his appetite and the smiles that he remembers those things. We can help each other.
Thank you for this important post. I think you're right about Alzheimer's being this century's disease. I can see where it would be disconcerting to have this running rampantly through your family. I wish you all the best with your brother and it's good of you to go through the studies.
ALZheimer's from dad's side. colon cancer too.
I dunno if that is worse than alcoholism or arthritis or
diabetes from mom's side. i kinda think it is. then again, i can
think of reasons, from my experience of dad's general forgetfulness,
that it is not..ay.
MWG: Thank you for your thoughtful response.
James: Staying positive helps. At least some of those potential health problems you may inherit have solutions. Hopefully medical research will bring a cure for Alzheimers in the next decade. Thanks for your responsel.
Some very good information, and the whole topic makes me weary. My mother had it for 15 years. She needed 24 hour care the last 13 years of her life. I had to make that happen, for 13 long years. The family did *not* rally around. They figured I had it handled. I don't think it's familial, although she got it relatively young, about my age now. Absent mindedness scares the hell out of me, losing my calendar seems like the beginning of the end. Every minor lapse looks like some kind of symptom. All so pointless. What are you going to do if it does turn out you have it? I'm a planner but I could not bear to plan for my own care. Maybe it would be good to simply say goodbye to people. I do hope something else kills me first.
sirenita: You voice some of the same concerns and angst I have. Yesterday I said Billy Holly instead of Buddy Holly when making reference to a song on the radio. Even a small stumble like that makes me stop and wonder. I have made some decisions. I try to live each day, each moment as if it were the last. Try, I say. Since I am in an AD study, I assume I will know if the disease is having its way with me early enough I can plan. With my family history long term care insurance is cost prohibitive. Like you, I hope something else gets me first. This may make me sound slightly depressed, but actually, having thought it through, I feel I am as ahead of it all as I can be. I don't dwell on it.
Beauty: Yes, you nailed a trope: it's going to be a big factor, with all the baby boomers aging...and all the potential toxins that have gone into our bodies that might be causing things like this. When my father finally couldn't do numbers enough to pay his own bills, I brought him to live close to me with all the supports in the world, and got him in a research study, partly because it was the best way to get him good care. His liver went out very shortly after he lost all language, which was a mercy, really. I treasured the time I had with him at the end. I had never been quite good enough as a daughter before that. He adored me as a caregiver, even though he didn't know who I was. It was all very strange.
Beauty: Yes, you nailed a trope: it's going to be a big factor, with all the baby boomers aging...and all the potential toxins that have gone into our bodies that might be causing things like this. When my father finally couldn't do numbers enough to pay his own bills, I brought him to live close to me with all the supports in the world, and got him in a research study, partly because it was the best way to get him good care. His liver went out very shortly after he lost all language, which was a mercy, really. I treasured the time I had with him at the end. I had never been quite good enough as a daughter before that. He adored me as a caregiver, even though he didn't know who I was. It was all very strange.
Maria Shriver's mother had Alzheimers and she said it was the one time in their lives together that she got to hug her and the caring was a way to be close to her that never had happened when she was clear and oh so busy. My mother is clear at 93 and oh so busy. She has always been too busy to love me and I wonder if that love will ever happen. I mentioned this to one of the sons of an Alzheimer patient I work with and he got angry. Of course it is better if they are clear and independent. I guess I have a different value system than most people. In the twenty years I have taken care of people with Alzheimer disease and other terminal illnesses as a social director in hospitals, homes and care centers I have seen miracles. Not in care and cure but in the small things humans do for each other that make any life worth while. I try to live in the moment and love the ones I find myself next too. Most days of the week find me in the company of twenty memory impaired adults and we have fun. Yes fun.
Zanelle: Thank you for your comment.

My mother spent most of her caring on my brothers. They needed an intermediary with my father. I reminded her of a sister she resented, so I got the short end of the stick, so to speak, from my mother. But I recognized her emotional retardation early on and consciously worked to be a better mother myself.

I wish my brother was in your care. He's in Canada in a rather isolated area, but they do have a care facility for those with AD. Unfortunately, they are understaffed and he is often neglected. It was very difficult for his wife to finally put him in there last fall. But there was no way she could keep him at home any longer. Now, at least, the time she has with him is quality time. The rest of us are 500, 1000, and 3000 miles away. We visit when we can, but it doesn't seem like enough. I assuage my guilt and bargain to keep AD from myself and those I love by volunteering in the AD study and working with the local Alzheimer's Association here in Portland, Oregon.
I think you have a great plan for dealing with it all. I know when you do see him you have fun and the food sounds delicious that you make. I hope your sister can know that even tho it seems understaffed, as every institution is, that there are people who care there and do the best they can. The activity folks are good people to get to know in a place like that and the little fun things that happen in the midst of the chaos and tragedy are what I look for. Never mind the big things. Support groups for families are good things to get involved with. If they don't have one start one. It is easy. With every problem you just say to the caregivers.."Take care of yourself first." I work in a day only facility and it is a little easier but still a challenge. My heart is with you and I am glad we are connected in OS. It is a very supportive place.
Thank you for posting this .I'll be interested in the follow up on the subject.
my grandfather died a few years ago w/ AD. Because Lyme disease is such a huge problem here in WI, some thought that he might have had Lyme as well and that it might have contributed to his AD b/c it is also a neurological disease which causes joint stiffness and muscle soreness (all of which he had).

thanks for this important post, and for sharing the personal photo ~