In the United States, more than 15 million informal caregivers, primarily family, provide unpaid care to people with Alzheimer’s disease. It can take a devastating toll. Studies show that caregivers have higher rates of depression, anxiety, insomnia, and cardiovascular disease.
Caregiving is truly one of the ultimate acts of love, and sometimes joy is still possible. Here to talk to us about the ups and downs of caregiving are Pamela Beidler, director of programs and outreach at the Vermont chapter of the Alzheimer’s Association, and Maggie Evans, a school counselor in Franklin County, Vermont, who is caregiver to her husband Larry. Larry was diagnosed with younger onset Alzheimer’s disease in his late 50s.
What is the state of Alzheimer’s in Vermont?
Pamela Beidler: In Vermont, we currently have 13,000 individuals who are living with the disease. We know that for every individual living with the disease there’s at least two people, like Maggie, who are providing direct hands-on care and support. And that’s unpaid care and support.
So, there are about 43,000 Vermonters who are touched by this disease.
Maggie, your husband has younger onset Alzheimer’s disease. Share with us a little bit about your experience.
Maggie Evans: I started noticing some differences in his behavior, some uncharacteristic behaviors. So we knew that something was a little bit off, but you never suspect Alzheimer’s at that age especially.
When he was finally diagnosed, I think it did not come as a complete shock that it was Alzheimer’s. But it’s very lonely at the beginning because you’re trying to protect your loved one’s dignity and so you’re trying to just take control of it.
And actually we were very valiant about it. I thought I’ll keep him home, we’ll get on medication, and we will tackle this and everything will be fine. You know?
But the reality is you can’t do it alone. And the Vermont Chapter of the Alzheimer’s Association helped me to figure that out. You just can’t do it emotionally, financially, health.
It’s a learning process. It’s one foot in front of the other. Every single day it’s something new. But, he finally did go into a residential facility last August.
What kind of help did you get from the Alzheimer’s Association in Vermont?
Maggie Evans: Well, as I say, I was trying to keep Larry home. This was not a good situation for him or for me or for my son, who was also living at home. Because, again, as I say, you try to keep things private for his sake.
So there were times that Larry would take off in the middle of the night. We found him one day in a cemetery. He said he had heard there was a good party going on in the cemetery. He would wake up in the middle of the night and think the police were coming and he would wake me up. So I wasn’t getting much sleep. He would take everything out of my closet and shove it into the washing machine. He thought he was doing the right thing. He thought he was helping. But the processing is what’s gone, and I think that’s what people don’t understand with Alzheimer’s. They think it’s just memory.
And Larry’s memory actually isn’t too bad. Even now he still remembers me, he knows our kids, he knows his dear friends. It’s the processing of how to do things that he gets lost in.
And then the final stage was I had a woman taking care of him at home and he ended up finding an ax. He said he got it from the library, we’re not sure where he got it. And he proceeded to chop at the house because he didn’t like the way some things were.
So I was just at a loss and I finally found the Alzheimer’s Association and Pamela, and she gave me wonderful advice. Pamela’s advice was so helpful, and she said, “You’re not doing him a favor by keeping at home.” It was too stressful for him. And that we needed to be a couple again. And so we have been able to do that.
I could not enjoy times with him as much at home when he was tearing apart my house. Now I have that back again. It’s pure love and we laugh.We laugh every single day. It’s different, it’s a different relationship, but I’m so happy we did it. I wish we had done it earlier, I think. But I wasn’t ready.
Pamela Beidler: I think this is such a unique disease in the way it impacts families. And for you, Maggie, being the care partner to somebody who is so young, this disease, it’s not an elder issue that it once was thought of. It is a … it’s a women’s issue. Because we are far more likely to become the caregivers to a loved one living with the disease. We’re also more likely to develop the disease ourselves.
It’s also an economic issue, because as you say, it takes this financial toll. Not only on families but also on our systems. So in Vermont in 2018, we will be spending $106 million in Medicaid. That’s astronomical. It’s a huge expense to our economy.
In addition to that, Maggie, you’re also in the workplace. This is a workplace issue.
Maggie Evans: Right. That was one of the problems for me is that I still have to work myself.
Pamela Beidler: Yeah. So you better believe it impacts. It’s a disease that has this trickle-down effect that we don’t often think of. For a long time it was closed off, it was within families and it was said in hushed tones. Much like cancer was years and years ago.
What resources are available to caregivers? How can they access them?
Pamela Beidler: We’re really lucky here in that we have a lot of resources available throughout national organization. These include online web forums for family caregivers, as well as individuals living with the disease.
We have telephone support groups, because we know that Vermont is a rural state. So it can often be difficult to travel to some of these support groups. We also know that it can be difficult to travel in the poor weather that we sometimes have.
And it can be difficult to leave a loved one or find respite to come in while you’re traveling to that support group. So we do have lots of online and over the phone resources.
Our 24 hour helpline is one of our most underutilized resources here in Vermont. And I’d love to see that change. Through our helpline, people have the ability to speak with a masters level clinician and really develop a care plan and strategy for moving forward, to live well with this disease.
So we can talk about legal planning, financial planning, and really develop an action plan for moving forward.
Maggie Evans: And that is so important. If I could say the one most important thing I think is that planning as soon as you get a diagnosis. Even when you get a hint, to go and get a baseline at the memory center.
Pamela Beidler: Definitely. And to be getting that diagnosis early. So that that person who is living with the disease can be an active participant in the decision making process. So that you as the family member aren’t having to think about what would my husband or my spouse like. Including them in that process is so important.
How have you have built your support team?
Maggie Evans: That’s a wonderful question, actually, because I would be lost without my support system. I am 58 years old. We have no family in Vermont. Larry and I are both from out of state.
And I have, we both have, the most incredible friends. The group of friends that we have that have been, even at the very beginning. I shared what I was seeing with Larry with a couple of my closest friends, thank goodness.
And now we look back and think oh my gosh, this was the beginning. So you do need to have somebody to talk to. And they’ve been wonderful.
People go up and visit Larry. He loves to have visitors. He’s still a social being. I think that’s kind of what you’re talking about also. We’re both young. Our lives have changed and it’s funny the things you did as a couple at this young age. Our kids are finally grown and our dreams have changed.
We don’t do the things that we normally would. I just sold our canoe, which was a heartbreaker. The empty spot glares at me in the backyard. But we change and so what we do is a little bit different.
And we just enjoy the time we have together. Every minute. And again, I know people say that, because some people say oh, I would have done something if I knew I was going to have Alzheimer’s, but boy I’m glad for every day we have. I really am. I’m so glad we’ve had the time that we have. And continue.
If we had a crystal ball, we would know. We don’t know how long we have.
June is Alzheimer’s and brain health awareness month. What’s going on?
Pamela Beidler: We have a lot happening all over the state this month. Part of this is through The Longest Day, which is a special event through the Alzheimer’s Association. It’s our second largest fundraiser, second to our Walk to End Alzheimer’s.
The Longest Day really is a do it yourself fundraiser. So people can do anything that they love. Many people are doing things to honor a loved one living with the disease. Whether that is going for a hike or working in the garden, or it’s hosting a dinner party.
And those are some of the things that are happening across the state. So we have a couple of different care communities are hosting the longest table here in Vermont, where they’re opening their doors and showcasing their dining services. All to raise funds. But it’s also about awareness.
We have a young gentleman who lost his father to the disease and he is hosting a gaming day. 16 hours of gaming at Burlington Airport. And so it’s so exciting to see these different [events happening. And it’s really all about doing what you love.
It’s really a lot of fun to see this come together.
You can find out more information on our website, or visit The Longest Day, or give us a call and we’d be happy to talk with people about opportunities in their community. Which is really exciting.
And there’s a walk as well?
Maggie Evans: There’s the walk for Alzheimer’s. It’s nationwide. Here in our area it’s on September 26 at Shelburne Museum. We participated the past two years. Larry was able to participate in both of them and he was the grand marshal last year. He just thought he was … it was wonderful. He was so excited. And they took him around in a golf cart and he was so proud.
You get a flower, each color represents a different group of people. Whether you’re a caregiver, whether you are someone living with Alzheimer’s, whether you are just somebody who is interested in supporting research and help for Alzheimer’s.
And it’s a very positive experience. You write names on your flowers and at the end of the walk you place your flowers. They place them in a garden and it is overwhelming, the emotion. It is the most emotional experience.
And then we bring ours home and put them in our garden. But it is very emotional. And as you’re walking through Shelburne, cars are going by and beeping. It’s just very … people are cheering you on as you walk.
And I think it helps me, knowing that I’m not alone. And I know it helped Larry, knowing he wasn’t the only one also and that he still has a life. I think that’s a big part of it, again, all of these things help with the loneliness. You just don’t feel like you’re the only person fighting this on your own.
Pamela Beidler: I think for many people and families struggling with this disease every day, this is their first introduction to the Alzheimer’s Association. And for many people, they come not knowing what to expect, thinking that it might be this sad, somber event.
And really, it is the total opposite. It is so positive, so uplifting. It really is this coming together as a community and this warm embrace, I think, around the caregivers and people living with the disease.
So we have four walks across the state, throughout September. The one Maggie’s talking about in Shelburne. At the Shelburne Museum we have, that’s our biggest walk. We had over 1200 people there last year.
We also have one in Rutland, St. Johnsbury, and new last year we had a walk in the upper valley. So all of those will be taking place in September. And it’s just a positive positive event.
Maggie Evans: And when you think of all of the people who have Alzheimer’s, or again who are touched by it all over just Vermont, it’s everywhere.
To learn more about the Vermont chapter of the Alzheimer’s Association and get resources and information and details on the events coming up in June, visit alz.org/vermont, where you can go to the Vermont page.