Category Archives: Uncategorized

Emergency Prep for Caregivers

Like a lot of caregivers, I spent most of yesterday doing #emergency prep. Some things had to be done advance, like stocking the bed pads and the adult wipes. I also did a lot of  cooking. But there are many tasks you can’t do until you’re in the middle of a crisis event like #Winter Storm Jonas.

Emergency Prep for Caregivers

Our original forecast called for 5-8 inches of snow. The weather man was wrong and in the end we got about 13 inches in our part of the Poconos. Though I’ve always tried to follow the guidelines for emergency prep, snow storms present a special challenge. So much of the situation is out of our control. Last week I filled the pantry and made sure we had my mom’s medical supplies. But we’re always in danger of losing power because we live in the woods. Heavy snow can break trees and damage the electrical lines. Once we lose power, we also lose water, because ours is pumped up from a deep well.

I need water to keep hands clean, wash dishes, and maintain sanitary conditions with someone who is incontinent. The last item is a big challenge if you don’t have running water. We have bottles of hand sanitizer and lots of wipes. But a faucet brimming with  hot water is hard to live without. I had to line the bathtub with large buckets and fill them all with water — just in case. Fortunately, we didn’t have to use them.

I’m also fortunate that we have good neighbors. Our house is in a remote place but the few people who live near us really help each other. One neighbor knocked on my door yesterday morning and said, “Meals on Wheels?” She brought us home made potato salad and a smile. Those smiles are worth a mint. After 24 hours of lifting my mom, clearing snow, and stoking the coal fire, I felt like a worn out wagon wheel. No aides could get to our house until this morning because our lane hadn’t been plowed.

Thank goodness the sun came out today. The snow looks a lot more friendly when those bright rays light it up. Many places got way more snow than we did and the safety challenges vary with geography. I hope all of you made it through the storm safely. Tell us your experience and please share if you have any good ideas about preparing for emergencies.

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.