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

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 my brother and my father's unwillingness to face her disease as it raised its head.

Unlike my male family members, I did not look away. Having a friend whose mother developed Alzheimer's in her 40s, I'd heard about its symptoms for a while. Remembering my friend's mother and my own grandmother's decline, I listened for my mother's distress, the increasing paranoia, her not recognizing purchases as her own, her calling me but not recalling that she'd spoken to me hours before. One of those daughters who talked to her mother everyday long distance, I suspected that Mom was in trouble before my father and brother dared see it.

I still talk to my mother, but it's not the same. Once she was the sage imparting wisdom to her only daughter. Today, she is the mother who sometimes calls me "that nice girl." Am I another's daughter those days?

One day I may be my mother, lost in my house.

It's one thing to face that a parent is in trouble, but considering Alzheimer's genetic link, I wonder would I be able to face it in myself? The irony of these thoughts for me is that should I live to my mother's age and face Alzheimer's, then perhaps I'll be grateful. You see, the need for a kidney is likely to take me out before Alzheimer's. But even kidney patients face cognitive impairment as the kidneys become less effective in cleaning the blood. So, whether thinking of my mother or thinking of myself as a future dialysis patient, I've thought about the possibility of not being able to think for myself. The specter of any form of dementia is terrifying, especially for those who cherish their independence.

And so that brings me to the question of new tests to detect Alzheimer's. Would I want to take one and know what's down the road? Would you?

I think about my own children, what's ahead for them in caring for me, whether Alzheimer's or kidney transplant, I will need my family at some point. Already I worry about being a burden, but I also examine life philosophically.

We are only sojourners here, learning the lessons we need to evolve spiritually and as a species. Aging and chronic illness remain part of the lesson. I look forward to growing older, to becoming the sage that was my mother, but I wish I could spare my family the painful process of watching my decline and carrying me through. Yet, to carry through an aging parent is part of life's growth path, isn't it? I can prepare myself and prepare my children.

Some folks would say, "How morbid!" But caring for family and preparing your family is one of life's challenges. As we prepare financially for old age, we should also prepare mentally. We must prepare while our minds still comprehend the journey.

Links

• Lessons from the Sandwich Generation