Four Seasons of Caregiving

I do my caregiving in the Pocono Mountains of Pennsylvania where the four seasons are usually quite distinct. It’s Christmas today. Though we have no snow for the first December in years, I don’t miss the shoveling and bitter winds. Caregiving makes me feel like I’m going through four seasons at once, regardless of the weather.

Four Seasons of Caregiving

Being a caregiver for someone with dementia complicates your emotional life. This is especially true around the holidays. I get a warm, springlike sense of gratitude while reflecting on the fact that my mom has made it to another Christmas. It’s great to witness the small pleasures she still enjoys. The lights around our patio imitate dripping icicles. They fascinate Mom. Her eyes sparkle with delight when my sister hugs her. No moments are warmer than these.

But at the same time that I feel this rush of happiness, I also have a sense of autumnal sadness. Mom’s lost so much of her capacity to live a full life. She can barely walk, even with lots of assistance. Her eyesight is almost gone. What else can she lose, I wonder? Is there a line past which all pleasure in life disappears?

Four Seasons of Caregiving -- Fall

Nothing about this melancholy feeling is surprising. Who wouldn’t be sad watching the slow decline of  a loved one? The bursts of hope are what really shocks. After eight years, wild fits of optimism overtake me when Mom is having a really good day. Once in a while she utters a complete, logical sentence and my heart just soars at the sound of her rare words.

The problem occurs when you leap from the hope of spring to the sweet summery expectation that things will get better. You start to believe the skies will be blue again and the sun will warm our skin. Maybe that’s true for us, but probably not for our loved ones. There is no setting back the clock on dementia. One good day or even one good week will not regenerate the skills of someone with grave neurological problems like my mom’s. Our future is more likely to be full of rocky weather and worsening symptoms.

In the end, it doesn’t matter much what emotional season we find ourselves in. We have to do our best to hold it all together and keep the ship afloat. May the winter holidays offer you hidden joys, sparks of hope, and a sense of peace to help you steer through every struggle and find happiness wherever you are.

 

Dementia Prevention: GeneMatch Study

Alzheimer’s research is moving toward a bold new era of dementia prevention. Last Tuesday a national project called GeneMatch, was launched by the Banner Alzheimer’s Institute in Phoenix, AZ. GeneMatch is a large scale effort to identify people at high genetic risk for developing Alzheimer’s. About 1300 high risk candidates will be asked to test a new drug designed to prevent Alzheimer’s.
Dementia Prevention

The GeneMatch study will select participants through genetic testing. Researchers will test potential study candidates to determine if they have the APOE4 gene. This gene dramatically raises a person’s risk for developing Alzheimer’s. According to Beth McCarty Wood, senior genetics counselor for the project, only about 15% of the general population carries a copy of this gene. Just 2% of the population has two copies of E4 (one from each parent.) People who have inherited two E4 genes have a 30-55% risk of developing Alzheimer’s.

I’m writing about this to study to inform those who feel their situation, and their courage, is at the right level for getting involved. No one in my family has had genetic testing. I never wanted to find out if I’m carrying genetic markers for dementia. But I have friends who  have watched generations of their relatives fall victim to Alzheimer’s. For them, the circumstances are urgent. They want to know their chances of facing the same diagnosis.

The GeneMatch study is different from other studies because it will offer support to people who discover they have the APOE4 gene. Counseling will be provided by researchers from the University of Pennsylvania. Of course counseling may not resolve all concerns, such as fear of blow back from insurance companies. According to Ms. Wood, federal law protects study participants against discrimination by health insurers and employers — but not by long-term care and life insurance providers.

Anyone interested in participating in the study can get more details from the GeneMatch site. The project may be the first to actually prevent people from developing this awful disease.