Fighting That Feeling of Helplessness in the Face of Alzheimer’s
Times I've felt helpless
I remember the specific moments that made me feel the most helpless. My grandfather would be telling me a story as I sat having a cup of tea with my grandmother and he’d be all alight with passion and happiness and then — he’d forget a word, he’d use the wrong one or the storyline would escape him. It was the recognition on his face, the overturned smile and the deflation of his billowing happiness that made me feel most helpless.
I struggle with this feeling a lot, to the point where, with the help of a therapist, I’ve identified that I fight tooth and nail against the feeling, setting myself up action points and elaborate plans to get out of that feeling as soon as possible. Admittedly, it’s not always the best reaction — but, when the adversary is Alzheimer’s, it is!
Spend time with Poppop
Gram was his immediate caregiver, and I vowed to make regular visits to their apartment to spend time with him. Gram reported that he felt better after these visits, and I know she enjoyed the company as well, so it was a win-win-win. The times I prioritized visiting them is time I’ll always treasure now that they’re gone.
For a portion of the time my Poppop declined, I lived in State College, PA, attending Penn State. So this plan shifted to phone calls and priority visits when I returned for breaks. I have vivid memories of sitting in a dorm room recapping my political science class with Poppop, a topic he and I both found interesting.
Participate & fundraise to end Alzheimer's
In 2010 I found the Walk to End Alzheimer’s, I rallied my troops and put together a small but mighty team. I brought Poppop and took some steps toward a world without Alzheimer’s alongside thousands of people who were in the fight with us, members of a community I’d come to know and love.
My fundraising efforts were not great that day, but I’ve stuck with it and this past year raised nearly $3,000, which is currently being used to staff a 24/7 helpline for patients and their caregivers, provide support groups for the same population and, here’s the big one, fund research for a treatment and a cure. I may not be able to singlehandedly fight Alzheimer’s, but with this community and the help of researchers, I can fight!
Volunteer your time to end Alzheimer's
As you can tell from this list of action points, I’m an organized, methodical person. When I registered for the Walk one year, I checked a box that says I’d be happy to volunteer my skills to advance this cause more. For the last six years, I’ve been a cheerleader at community events, I’ve created action plans for recruiting new walkers, I’ve posted to Facebook more times than I can count and, I hope, spurred action in others to get involved and raise more. My $3,000 is a drop in the bucket, but if my passion can inspire others, well, that’s a chain reaction that makes me feel uber-powerful. Today, I’m the co-chair for the Walk I took my Poppop to nine years ago — something I know would make him very proud.
LOVE your loved one
I cannot stress this enough — you are doing something right now to fight Alzheimer’s. You’re loving your person. You’re filling his or her life with joy and warmth and light where Alzheimer’s is sadness and cold and darkness. She may not know your name, but she feels your love. He may not remember all the ways he made you into the person you are today, but his heart knows your heart. Keep spreading that love and light and Alzheimer’s will have nowhere to go.
Can you relate to Shannon’s feelings?
Do you find legal and financial jargon in dementia care confusing?