One extra highlight this week: If you’re interested in participating in a pilot study to help empower caregivers through an online program, fill out this form
Thanks for tuning in. As a caregiver, I hope that you find some solace in these stories. There are many of us out there. It’s important to be reminded that you are not alone. If you know of other caregivers, please share this letter with them so that they can read and share their own stories too.
As always, you can also submit your own caregiver story at this link. We’ll continue to highlight a new story each week.
We had some really heartfelt submissions last week. This one comes from Kelly Williams! Thanks Kelly :)
‘Why I Fight’
February 16, 2004. That’s the day we lost my grandfather. Well, my dad’s stepdad, but he was always considered my grandfather, affectionately P-Pa, from the time I was born. That year, I was in my final semester of college and didn’t expect the end so soon.
The Diagnosis
I’ll never forget my grandmother sitting us down to tell us the diagnosis. My sister and I were in our early teens. Alzheimer’s disease. Sure, we had heard of it, but that was supposed to be an old person’s problem. Our grandfather was only in his 50s. Okay, so he forgot where his keys were or left something behind somewhere. Who hasn’t done that before? The diagnosis didn’t ring true for me for quite some time. He seemed like the same lovable man I had always known. The grandfather that would rush home for lunch on the days he knew we were staying at their house. The same grandfather who had climbed around on the floor with us, let us play dress up with him, and played music for us. Surely this old person’s disease wasn’t going to affect him. He was still young. There was still time. Our sweet grandmother tried to get us to read literature on Alzheimer’s, but being a typical teenager, I just didn’t want to know. I didn’t want to think about what may be coming. I didn’t want to think about how it might end, would end.
The Progression
The progression was slow at first. It was early onset, as they say. He would forget little things. For the longest time, I didn’t really notice much of a difference. And then it seemed to grow steadily worse. He wouldn’t remember us when we’d visit. I know many people have experienced this and I know I’m not alone when I say that it feels like a slap in the face the first time. This tall, strong, loving man was starting to drift away from us. The family would visit for holidays, birthdays and random gatherings. We’d find our usual spots in the living room and glance at P-Pa, sitting in his usual chair. The chair he held me in when I was a baby. The chair he sat me in when I was barely a toddler with his headphones balanced on my ears. The chair where he shared his interest for CB radio. That chair had been there for years, but the man in the chair wasn’t the same. Every now and then he’d reminisce about something from his youth. Something I had never heard before, but then he would grow quiet and not recognize any of us in the room. Including my grandmother. He was the love of her life. She had found a second chance with him and the love they had still continues to inspire me. He made her so happy. It was so hard to watch her suffer as he suffered. She continued to stand by him as the disease took him away from her. She served as his primary caregiver almost to the very end. She is so much stronger than her little five-foot frame would suggest. She is a fighter. They both are the reason I fight.