Listen: What Alzheimer’s Means For Caregivers

For the second interview in our series “Getting Into Their Reality: Caring For Aging Parents,” News Director Eric Douglas spoke with Teresa Morris, the program director for the West Virginia chapter of the Alzheimer’s Association. They discussed what Alzheimer’s disease is and what it means for the caregiver.

This interview has been lightly edited for clarity. 

Douglas: Explain to me what we’re talking about. Explain to me what Alzheimer’s and dementia are. They are separate but they’re effectively the same thing. 

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Morris: We typically describe dementia as a collection of symptoms that affect a person’s ability to function independently. Now, those symptoms or those traits can be memory loss, issues with reasoning, issues with sequencing, language deficits, the list goes on and on. But basically, it’s describing those symptoms as a result of brain changes that happen in an individual. Alzheimer’s is a type of dementia. So we have about 12 or 13 different types of dementia. So we have Alzheimer’s disease, there’s a Frontotemporal dementia, there’s a vascular dementia, Lewy body dementia, a Parkinson’s dementia. Those are characterized by different types of changes in the brain.

Douglas: And I guess the location in the brain is going to affect the problems they’ll have.

Morris: Exactly. Most all dementias are going to have memory loss, they’re going to have issues with recall, they’re going to have issues with language, but they can be characterized a little bit different. There might be more behaviors with someone that has a Frontotemporal dementia, there might be personality changes, there might be more aggression, maybe, with another type of dementia.

Douglas: Let’s discuss the challenges of being a caregiver for somebody. 

Morris: A caregiver of someone with dementia, they deal with, obviously, the mental decline of the person that they’re caring for. The caregiver, often they experience grief, they’re going to mourn what they expected their parents or loved one’s end of life to be like, and it’s very, very different. The fact of it is, someone with dementia is going to require 24 hour care, eventually. All of the things that make someone independent are going to be lost. And so a caregiver will be charged with medication management, meals, safety within the home, financial considerations, you name it. Whatever you take care of in your own home, you’re going to have to take care of in your loved one’s home and that often comes with consideration for residential care or additional care in the home. And then that turns into financial considerations.

Medicare does not pay for caregiving, per se. So then you have to look at private pay for care in the home, or if you look at an assisted living or personal care unit, that’s still private pay. And then sometimes folks might need to qualify for Medicaid. And so then there’s the challenge of going through that process of selling maybe the home, or the land and all the possessions to be able to provide the care that someone with dementia.

Douglas: What are the support groups for? What would I gain from being involved with one of those groups?

Morris: Our support groups meet once a month. We try to keep them to about an hour in length, because people are busy. A lot of caregivers have jobs, so they can’t really be gone. Or if they’re a 24/7 caregiver, they can’t leave the person with disease for more than an hour.

I think you gain camaraderie. The people in those groups are absolutely going through what you’re going through. Maybe I haven’t been in your shoes, but the people, the members of our support groups, are walking it. They’ve lived it.

Douglas: How does somebody get involved? Where do they start? 

Morris: If you’re interested in a support group, the best thing to do is to call our chapter office. That number is 304-343-2717. And you just tell us where you are. We’ll try to plug you into a support group that is local to your community. COVID did teach us that support groups are still effective, even if you’re not in person.

Douglas: I feel like we’ve got covered a lot but what haven’t we talked about? 

Morris: One of the things was some tips for coping with caregiving. I always say a healthy caregiver is a good caregiver and an exhausted and sick caregiver is not so much. You have to really try to find time to manage your own stress and to try to take care of yourself. You have to go to your own doctor’s appointments. If you’re down, you’re never going to be able to take care of the person with the disease adequately. Be realistic about what you can and can’t do. I often see people who will say, what I told my mom, I’m never going to put them in a nursing home or a long term care facility. While that is a very valiant statement, there might come a time where that’s the best thing for you and for your loved one. And that’s okay. That’s what they’re there for.

You have to give yourself a break. You can’t jeopardize your health and your well being to take care of an individual. I always tell folks, whatever you’re doing, you’re doing your best. It’s okay. You’ve got to give yourself a break. Especially if you’re working and if you have your own family. You just have to know that you’re doing the very best that you can.

And it’s okay to ask for help. Your mom has cancer, and you tell your friends, you tell your church, and you’re gonna get casseroles for weeks, you’re gonna get cards, you’re gonna have people stop by, you’re going to be taken care of. But oftentimes, when you tell your friends, you tell your church group, whatever, my dad has Alzheimer’s, people don’t know what to say. They don’t know what to do, they often withdraw.

I believe we have to increase awareness of the disease so that our friends and neighbors and extended family become better at dealing with or helping someone who’s a caregiver.