When you live with someone who has Alzheimer’s…and that person is your parent…there’s an inevitable thought in your head. Sometimes this thought strikes unexpectedly, other times you spend hours scouring the internet for information. “How likely am I to get Alzheimer’s?” Especially when it’s not just your parents with this disease. My father’s father had Alzheimer’s and my mother’s mother had Alzheimer’s. My chances? The numbers vary from site to site, so I went to my trusted Savvy Caregiver’s class handbook, to read that only a small percentage of cases (2-4%) of Alzheimer’s can be thought of as being strongly hereditary. Those with one parent who had the disease have a three times greater risk of the disease than those with no first-degree relative with it. Since the chance of getting the disease for the general population is only 1% at 65 and 2-3% at 85, those odds for me aren’t that much greater.
Still…since I have Alzheimer’s in my sights, I thought it would be a great idea to take part in any clinical trials available for someone my age and in my position as a caregiver. I got a call from the Alzheimer’s Association from a wonderful woman, Katie, who sent me a list of trials I can choose to participate in…or not.
Today I pulled out all of the paperwork and examined six different trials in which I could choose to engage. Some are online, some involve being interviewed and some ask for physical participation at a hospital or medical facility. I decided to jump in today with an online survey that focused on the changes in the levels of stress encountered by caregivers. For many who choose to take care of a loved one with Alzheimer’s there are significant changes in health behaviors…specifically overeating. What I really liked about engaging in the questions about my stress levels and eating habits is that the results will help advance the field by helping to understand the impact that stressors have on health and risk for obesity among Alzheimer’s family caregivers.
For me, because it’s challenging to quantify how my role makes a real difference for my parents, contributing this information actually gives me a sense of meaning, as researchers try to grasp the full scope of this disease with no cure. I know I’m part of the tsunami known as Alzheimer’s. I’m not sure where I am in this wave, but as we all continue to age, the likelihood of knowing or being related to someone with Alzheimer’s increases with every year…and I want to be as prepared as possible. We still don’t know what causes this disease, so if I can be on the cutting edge of getting and disseminating that information, it would be a privilege.
Many of the questions I answered today remind me of what my father has lost to this disease. When it comes to tasks, independence, finances, mobility, decision making…his mind is literally disintegrating. My mother and I are here to stem some of that loss by making him feel as secure and comfortable and safe as possible, even as he realizes things are not the same.
Worrying about whether I’m next in line for Alzheimer’s will do me no good as I forge ahead in this endeavor. Giving researchers the tools to better understand the causes and someday be able to treat this disease, that’s an exercise I welcome with open arms.
I am not alone. For many, caring for a loved one with Alzheimer’s can be stressful. Here are ten symptoms of caregiver stress: Denial, Anger, Social Withdrawal, Anxiety, Depression, Exhaustion, Sleeplessness, Irritability, Lack of Concentration, Health Problems. If you’re feeling stressed, call the Alzheimer’s Association 24/7 Helpline: 800-272-3900.