November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. Alzheimer’s is a disease that affects five million Americans. It damages the brain while causing a steady loss of memory, speech impairment, and interference with daily activities. During November, the Alzheimer’s Association recognizes the more than 15 million people in America providing unpaid care to a loved one living with Alzheimer’s or Dementia.
This week on HealthSource Radio, we spoke to Pamela Beidler, Director of Programs and Outreach at the Alzheimer’s Association of Vermont and Liz Vogel, who is a caregiver for her father, who has Alzheimer’s. Listen to the interview at the link below, or read the transcript that follows.
What does Alzheimer’s look like?
Pamela Beidler: For every individual, it’s very different. We have a saying at the Alzheimer’s Association, if you’ve met one person with Dementia, you’ve met one person with Dementia because everybody is so uniquely different. They bring with them a full life history. They also bring with them a full medical history, which can play into the progression of the disease, too.
Alzheimer’s disease is not a normal part of aging. This is a disease and it’s a progressive, degenerative disease. It could last anywhere from two years to 20 years, depending on that person’s overall health and well-being.
The best place to start is with their primary care physician. If somebody is having any type of concerns about themselves or a loved one, I’d say start the conversation with the care provider.
Liz Vogel: When my mom passed nine years ago, before she passed, she literally took my face in her hands and said, your father’s going to need a lot of care. But, she knew and he knew that something was different.
I moved up to help provide care for him after she passed.
Initial caregiving with dad, he was still driving when I came up. He was still paying his own bills. He was still doing a variety of things. Very quickly, within a year, some of that started to change.
We’ve had to go through a lot. We’ve had to go through bill paying and he recognized and he asked, will you sit with me while I do this to make sure I do it right. Then, at a certain point, his handwriting wasn’t legible. Would you write these and I’ll sit here while you write them. So, it progresses over time.
I didn’t know what I was getting into and I think, almost anybody I know and have had conversations with who gets into care giving, you absolutely do it for altruistic reasons and this is the right thing and I personally believe, morally, I have an obligation to my family to provide care. I had no idea what was going to happen. I’m also one of the lucky ones. My father has aged with grace. Alzheimer’s isn’t always as kind to everybody. I know, when I talk to people about it, one of the things I try to imagine, I guess, because I don’t know what it’s like, is if my world changed in the same way as my father’s had, wouldn’t I be a little angry or upset or frustrated? Wouldn’t I feel like I was bound?
I can still tell my father thinks of words, he can’t articulate them anymore. I can’t imagine the frustration of that.
Pamela Beidler: One of the best things that I’ve ever learned in supporting people with this disease, is validation therapy and just being with the person. Too often I think we, as caregivers and support people, want to fix what’s going on. We can’t fix this disease. We can’t change the diagnosis, but what we can do is simply be present in the moment with our loved ones and validate whatever emotion it is that they are feeling. So, if it is anger, if it is frustration, if it’s sadness, be with that person and recognize that emotion. Saying, I’m so sorry you’re feeling frustrated. I get frustrated sometimes too.
Liz Vogel: I think that’s a really important point, Pamela. I feel like I had to learn a foreign language, in some ways, to speak in the present. I never asked dad to recall anything. What I do, is I’ll say, I remember a time when we were carving out the pumpkin and the dog was there. I remember this, I remember that, I never say, “do you remember?” I never try to force him into those sorts of situations. If he gets something wrong, I’m like, yeah. In the end, what does it matter? I think our human nature wants to correct and replace the incorrect thought with the correct one. So, theoretically, they’ll learn it, but they’ve forgotten it.
Pamela Beidler: So, a better approach is simply being in the moment with that person and talking about what’s happening, whether it’s taking a walk and talking about the weather or what observations are around them. That can be a much more effective way to connect.
What kind of resources does the Alzheimer’s Association of Vermont offer to people to help them learn these things?
Pamela Beidler: So, the Alzheimer’s Association, we’re a national organization, but we have our Vermont chapter located here in Williston. We have five staff members. We like to say that we’re small but we’re mighty, because we cover the entire state.
Some of the different programs that we offer: we offer a lot of family education and support. That is in the form of workshops and support groups. We have a statewide telephone support group because we understand that Vermont is a rural state and it can often be difficult to travel to a support group in person. We also know that it’s Vermont, so the weather can sometimes come up and interfere with driving to a program. There’s a unique phone number and access code to dial into the support group. There are participants who are calling in from across the state. We’ve got people from Rutland, from Brattleboro, from Burlington, who may not be able to access a support group in their local community.
One of the other wonderful tools that we have is our 24/7 help line. That is a national number, but they’re tied in to all of our local resources. So, if you call and you say, I’m in Sheldon, Vermont and I need a support group, where do I go? They can direct you there. And whatever follow up they need, more localized, I’m able to offer that direct support.
This disease is so unbelievably isolating for both the person living with the disease, but also for the family caregivers. It’s really important for people to come together to form a support team.
Since it’s Alzheimer’s Disease Awareness Month and also Caregivers Month, let’s talk about some ways that caregivers can practice self-care and ways that friends or co-workers can help.
Liz Vogel: I think there’s a couple ways. I go for a lot of walks with my friends. A lot of us are about the same age and a lot of us are doing the same thing. There’s a little bit of venting that kind of goes on. Like, this went on or the guilt of I should be doing more or I can’t take it anymore or whatever it is. You just listen, but also you share your experiences and you can help each other go, oh, I didn’t think about that. Or maybe they just haven’t been through that situation yet. So, we can support each other that way. Being there, letting them know that you’re there, spending time with them, letting them vent. I think it’s a communication thing, wouldn’t you say?
Pamela Beidler: I would have to agree with you. I think there are a lot of families, too, who don’t have as many siblings or family support so that’s where we have to rely on community supports. We have to build our care team. We’re really lucky here in Vermont in that we do have a wonderful network of supports, whether it’s the Alzheimer’s Association or it’s reaching out to the area agencies on aging or programs like SASH. These are great ways that we can really provide a wraparound of services and support for the individual and the care partner.
The holidays can be a source of stress for people whose loved ones might be experiencing Dementia or Alzheimer’s is it worth celebrating and following through on your family traditions?
Liz Vogel: I think so, personally. I mean, I think, in very much what Pamela had indicated before, it is a case by case scenario, I think. You have to gauge. If you’ve got a family member who might be agitated by things, just sort of pay attention to that level. What I’ve noticed, with my own father is, if people are talking and we’re playing Christmas carols, that’s way too much stimulation. One of the things I’ve noticed is, one person talking at a time, a little bit slower pace, not in a way that you’re trying to enunciate like somebody doesn’t understand the language, but just the cadence of the word resonates with them, that they can follow the story, those sorts of things.
One of my dad’s key signs was, if he started to bow his head and nod a little bit while somebody was telling a story … It took us a while to learn this, but that was his tell sign for he was having trouble following along. It was a very gracious way, on his part, not to look confused, but that was the tell that it was just too much. It’s hard because families have traditions about singing songs or doing certain activities. I think we would just sort of take dad out of it at a certain point. Or, we would do things in a separate venue so we could still continue the traditions, but know where his threshold was with that.
Pamela Beidler: Some ways that we can help set him up for success in those moments, if you are planning a family gathering is, making sure that the rest of the family is on the same page. So, communicating to them what some of those challenges may be or those telltale signs of knowing when dad is really having a hard time so that everybody knows so that they know that only one person talking at a time or we don’t want it to be overstimulating. Maybe you also have a quiet room set up, where, if it becomes overwhelming, maybe he just needs a few minutes to relax before rejoining the group.
Liz Vogel: I celebrate the holidays now for what is. We tend to live in the moment. It is often said to be the best thing and the hardest thing that you will ever do. I don’t regret a moment of it. I will not lie and say it’s been easy. It’s very hard to watch somebody slip away and become somebody new, oftentimes, to you. I did lose the father that I once knew, but I also found, at his core, this amazing person who still, at 92 next week, has a twinkle in his eye. He still has a sense of humor. He can’t remember anything 15 seconds ago and he can’t really project, but he’s so grateful for everything.
To learn more about some of the options that are available, call the 24/7 help line at 1-800-272-3900 or visit ALZ.org.