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Edith Gendron: Caregivers for those with dementia cannot do it alone

Edith Gendron is chief of operations at the Alzheimer's & Dementia Resource Center in Winter Park. Photo: ADRC
Edith Gendron is chief of operations at the Alzheimer's & Dementia Resource Center in Winter Park. Photo: ADRC

Caring for someone with Alzheimer's or another form of dementia can be isolating.

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Edith Gendron is chief of operations at the Alzheimer's & Dementia Resource Center in Winter Park. Photo: ADRC[/caption]

Thursday, we brought you a story about restaurants providing a bit of normalcy for caregivers and those living with the disease by offering dementia-friendly dining.

Today, we bring you this audio postcard from Edith Gendron with the Alzheimer's & Dementia Resource Center. She says Orange County alone has 30,000 people diagnosed with Alzheimer’s disease, which means a lot of caregivers on the journey with them.

In her words ...

Supporting caregivers

My name is Edith Gendron, and I'm the chief of operations here at Alzheimer's and Dementia Resource Center. Our offices are located in Winter Park, Florida. Our primary mission is to support the at-home caregiver.

Dementia is not a diagnosis. It's an umbrella term. It means there's a collection of symptoms that have interfered in the person's ability to function in their daily life. Alzheimer's disease is the primary form of a dementia.

I'm going to start with saying something very hard to hear. We lose 50% of our caregivers or care partners, before we lose the person they're caring for. ... Every single person, every single caregiver needs help, they cannot and must not try to do this alone.

A sometimes frightening voyage

I use the term voyage because this voyage of having developed some form of dementia and in having a care partner to me it's like the ocean that it can be a rough ocean one day it can be a glassy, clear ocean. We're never too sure what's underneath there. It's not all frightening. Some of, you know, you some of it's beautiful. Ssome of it's a little frightening.

One of the things we learn fast when we enter into this world of dementia is it really is the here and now. Our culture is tomorrow and next year. Aand we plan, and what's your five-year plan? We need to stop all of that thinking when this becomes our world.

There is this ribbon of grief that runs through it, and it's not like grief you or I may have experienced when we lose someone we love. This is a continuous cumulative grief. That tends to build over time. It gets harder over time to deal with the daily, the weekly, the monthly changes. When your person no longer knows who you are. That's a real grieving moment. From the time you worry that something might be changing that feels sinister to you, that grief starts. And then of course you get the diagnosis and you get the confirmation and then the grieving process, again, is just intertwined through all of this. And I can't express strongly enough how very, very hard and unique that form of grief is. It's not like any other grieving situation we experience in our lives.

Isolation is a killer

COVID taught those of us who might not have realized how severe isolation was that isolation is a true, I'm going to say, killer. And the diseases of dementia are already isolation prone. People stopped coming to visit. They don't know what to do. So now you're home alone with your person, and it's difficult to go out.

Caregivers cannot do this alone. And if there's one or, if you're lucky, two I'm going to say outside that intimate circle, right? So a good friend or a relative that gets it, that just comes along and says something like, "You know what, let me worry about your laundry. I'll come and pick it up. I'll take care of it for you." Or, "I'll take care of your lawn," or you know those kinds of things. You know, you might not be real comfortable trying to interact with the person who's developed the illness as it goes on and progresses, but you can still be real help to that care partner, who then can take a nap, who can go for a walk, who can read a book.

Joe Byrnes came to WMFE/WMFV from the Ocala Star-Banner and The Gainesville Sun, where he worked as a reporter and editor for several years. Joe graduated from Loyola University in New Orleans and turned to journalism after teaching. He enjoys freshwater fishing and family gatherings.
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