Caring for someone with Alzheimer’s disease or another form of dementia can be isolating.
On Thursday, we brought you a story of restaurants providing some normalcy for caregivers and people living with the disease by offering dementia-friendly meals.
Today we bring you this audio postcard of Edith Gendron with the Alzheimer’s and Dementia Resource Center. She says Orange County alone has 30,000 people with Alzheimer’s disease, which means there are plenty of caregivers with them.
In his words…
My name is Edith Gendron and I am the Chief of Operations here at the Alzheimer’s and Dementia Resource Centre. Our offices are located in Winter Park, Florida. Our primary mission is to support the caregiver at home.
Dementia is not a diagnosis. It is a generic term. This means that there is a set of symptoms that have interfered with the person’s ability to function in their daily life. Alzheimer’s disease is the primary form of dementia.
I’m going to start by saying something that’s very hard to hear. We lose 50% of our caregivers or care partners before we lose the person they care for. … Every person, every carer needs help, they cannot and should not try to do it alone.
A sometimes scary trip
I use the term journey because this journey of having developed a form of dementia and having a care partner for me is like the ocean that can be a rough ocean one day it can be an ocean glassy and clear. We never quite know what’s underneath. Not everything is scary. Some, you know, some of them are beautiful. Some of them are a bit scary.
One of the things we quickly learn when we enter this world of dementia is that it really is here and now. Our culture is tomorrow and next year. And we plan, and what is your five-year plan? We have to stop all this thinking when this becomes our world.
There’s this ribbon of grief running through it, and it’s not like the grief you or I may have felt when we lose someone we love. It is a continuous cumulative grief. It tends to build over time. It becomes more difficult over time to manage daily, weekly and monthly changes. When your person no longer knows who you are. It is a real moment of mourning. The moment you fear that something will change that seems sinister to you, that heartache begins. And then, of course, you get the diagnosis and you get the confirmation, and then the grieving process, again, just ties into all of that. And I can’t express strongly enough how very, very hard and unique this form of grief is. It’s not like any other grieving situation that we experience in our lives.
Isolation is a killer
COVID has taught those of us who might not have realized how bad isolation is that isolation is a real, I’ll say, killer. And dementia diseases are already prone to isolation. People stopped coming to visit us. They don’t know what to do. So now you’re home alone with your person, and it’s hard to get out.
Caregivers cannot do it alone. And if there’s one or, if you’re lucky, two I’d say outside of that inner circle, right? So a good friend or a relative who understands, who comes along and says something like, “You know what, let me do your laundry. I’ll come get him. I take care of it for you. Or, “I’ll take care of your lawn,” or you know that sort of thing. You know, you may not really be comfortable trying to interact with the person who has developed the disease as it progresses, but you can still be a real help in this. care partner, who can then take a nap, who can take a walk, who can read a book.