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Nordette is a freelance journalist, published fiction writer, poet, and the mother of two children. She is also a BlogHer.com Contributing Editor an...
 
 
 
 

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Alzheimer's in the family: Would you want to know that you had the disease?

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Sometimes an issue in the news hits so close to home it rips your guts. That's the case for me when I hear Alzheimer's news. You may have heard the report a few days ago about the increasing number of Alzheimer's cases in the country (mainly due to Baby Boomers getting older) and the push for early detection (video).

A new Alzheimer's Association report says the number of people with Alzheimer's is on the rise and, while elderly people still represent the vast majority of cases, as many as 500,000 people under age 65 are living with the disease. (source)

For me, such reports conjure my present fears and my possible future, both dark specters that wander psychic corridors wringing their hands.

My mother has Alzheimer's, and our family suspects that my maternal grandmother did as well. My father does not have the disease, but he is in his 80s with diabetes and chronic arthritis. Their care is one of the factors I consider when weighing whether to stay in New Jersey or return home to New Orleans.

I think New Jersey may be better for my son, who has two years left to high school and friends, but I think New Orleans may be better for our whole family because my parents are there and my brother and sister-in-law presently carry the load of looking after them. Due to the strained finances of post-divorce life, another reason to consider leaving Jersey, I can't travel down to New Orleans to give my brother and his wife even the briefest respite. So, here I am, sandwiched by dueling familial responsibilities and guilt.

Families in the sandwich generation, those caught between caring for elderly parents and their own children, live in a pressure cooker. Discussing the increase in Alzheimer's cases in the United States, which will surely impact the sandwich generation, Stephen McConnell, vice preeisent of advocacy for the Alzheimer's Association, told Gwen Fill of PBS news that the disease has a ripple effect in families:

GWEN IFILL: You know, it's interesting, there's also the ripple effect question with Alzheimer's. And like a lot of diseases, it has immediate effects on people, caregivers, people in other families, and, as a result, on the economy.

STEPHEN MCCONNELL: There are 10 million people caring for that roughly five million people with Alzheimer's disease. Those are the ones providing direct care, putting in some 85 billion hours in that care.

We know that it's very stressful. People that are caring for someone with Alzheimer's disease are more likely to have injuries caused by falling, lowered immune systems, premature death. So it's a disease that does have a ripple effect. It affects the children of a person with Alzheimer's because of the economic impact. Frequently, people have to choose between care for an elderly parent and college education and so forth.

I hadn't really thought about the disease as it impacts the health of caregivers; however, I do think caring for my mother has contributed to my father's declining health as much as old age in general has affected him. The economic impact hasn't strapped my family as badly as it has some yet because my parents have good health and retirement plans.

However, my brother and I have discussed their need for more care, costly care, in the future, and I've lamented my inability to make an adequate financial contribution. What is an adequate contribution when you want to take care of the people who've taken such good care of you?

My mother didn't show signs of Alzheimer's until her late 60s. Perhaps this is a good sign for me and my children. Maybe it means we won't be among the growing number of Americans who suffer early-onset Alzheimer's disease like those mentioned in this KSDK news piece:

While one in eight Americans over age 65 has Alzheimer's, it's those under 65 that have scientists most concerned.

Marilyn Blum's husband is one of them.

"He's in a lot of denial and he doesn't face it head on. It's rough, though. It's very hard," she says.

Even her doctor is skeptical.

"She looks at him and she says, 'He looks healthy. He's too young,' and she just won't believe me," said Blum.

But early onset Alzheimer's is real. Today's report from the Alzheimer's Association estimates up to half a million Americans are affected

I remember the denial. While my mother did not suffer early-onset Alzheimer's, I remember both

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suzibeth 5 pts

 Thank you for sharing, Nordette,

What I found reassuring from my neurologist is that late onset Alzheimer's is much less likely to be hereditary.  Since my Mom's diagnosis wasn't until she was 91, he felt that genetics weren't as much a factor for me.

 Somthing for Boomers to keep in mind for their peace of mind.

Suzanne Holman, MAEd

Business and Family Life Coach
http://www.FamilyAlz.com

ericy 5 pts

Unfortunately, people with Alzheimers Disease cannot always have the final word about key decisions. The disease may impair their judgment, sometimes resulting in an overestimation of their abilities, so that other people must sometimes decide what is in their best interest. In some cases, it is a frightening prospect to the person with the disease to trust others with so much authority over their life. Likewise, it is an awesome role for you to assume such responsibility for another person’s well-being. However, you can be satisfied knowing that you are acting to protect the person with Alzheimers Disease from certain risks and to ensure their quality of life....

Alzheimers Disease - make decision ( http://harmononline.org/index.php/2007/07/02/perso... )
Alzheimers Disease Information ( http://harmononline.org/ )

Kim Pearson 5 pts

what wonderful words. I do not know whether this will offer any consolation, but when I was diagnosed with ankylosing spondylitis, and learned that a genetic marker was associated with it, one of my first questions was whether my children were at risk. My daughter's pediatrician looked at me with a level gaze and asked, "Has anything happened to you as a result of your condition that made you wish you hadn't been born?" And I had to answer, no -- if anything, it made the life I had more precious, because I knew that it was not to be wasted.

Whatever faces you and your family, I wish you serenity and fortitude.

BlogHer Contributing Editor ( http://www.blogher.com/<a )
Law and Journalism/Media
Professor Kim ( http://professorkim.blogspot.com )

Contributing Writer ( http://www.ojr.org/ojr/people/KimPearson ),
Online Journalism Review

agingexpert 5 pts

In addition to those of us who have Alzheimer's in our genetic history, there is large population of pre-diabetics and diabetics who are at high risk for this dreaded disease. Some researchers have suggested that the similiarities between diabetes and Alzheimer's disease argue that Alzheimer's disease could be considered type III diabetes.

The real question is what to do about the risk. The first and maybe most important step is excercise. The March 26, 2007 issue of Newsweek has a facinating article entitled "Can Exercise Make You Smarter?" It discusses the research that suggests the exercise can prevent, delay, and modify the course of Alzheimer's disease. While we all wait for a vaccine or a pill to deliver a "boomer miracle," the choice to exercise on a regular basis may be the most important "quality of life' step we take in the battle against Alzheimer's disease.

Debra Roby 5 pts

Nordette,

My mother died of AD, and we believe that her mother, too, died of the same disease. Both became symptomatic in their mid-60s, both needed to be placed in nursing home care within 3 years. Both then took about 8 years to die.

I am so torn about whether I'd like to know my own chances. I can accept that if I die of disease it will be heart disease or Alzheimers. I can be pleased that much of the new research is showing that treating my threat of heart disease may be also treating my threat of AD.

If by knowing I could change things: find a treatment to delay or limit or even cure the AD, then I'd wish to know now. As I will be alone in my later years, at some point knowing will help me make decision while I can about where to live and what to do with my limited funds.

However, if the only thing is knowing.. with no options... then please let me remain ignorant.

Debra
A Stitch In Time ( http://astitchintime.blogspot.com )
Deb's Daily Distractions ( http://debsdistractions.blogspot.com )