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Caregiver Q&A with Debra Wagner Seehaver

Caregiver Q&A with Debra Wagner Seehaver
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November 16, 2020
Email: krcopenhaver@alz.org
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November is National Family Caregivers Month and National Alzheimer’s Disease Awareness Month. To mark these events, the Alzheimer’s Association Michigan Chapter is recognizing a few of the more than 518,000 Michigan family members and friends serving as Alzheimer’s and dementia caregivers with a Caregiver Q&A.

Caregiver name? Debra Wagner Seehaver
Loved one living with dementia? Paul Jonathon Seehaver
Relationship to one another? Spouse of 41 years

Debra-Seehaver_300px.jpg

Was your loved one diagnosed with Alzheimer's or another form of dementia? In what year were they diagnosed? He was diagnosed with younger onset Alzheimer’s on Feb. 13, 2018.   

Can you tell us a little bit about your journey with the disease? Paul is 65. He was 62 when he was diagnosed but had been showing symptoms for a good 7-10 years before that. He initially started with just being really all over the place, not being able to focus. We had multiple homes and businesses at the time. Everyone chalked it up to a lot going on. Problems with things such as coordination started. Driving issues, then motor skills. Then, he couldn’t find the right words.

We started looking into neurology issues. He had so many exams and his diagnosis took forever. We ended up going to the Cleveland Clinic and started seeing two doctors there. I finally got the results over the phone, but waited until our impending trip to the Holy Land was over to tell Paul. It’s painful and shocking, but a relief when you get the diagnosis. It’s a grieving like you’ve never experienced before. When you’re dealing with the brain, it’s all over the place. You really can’t predict or plan at all.

What are some of the biggest challenges you face as a caregiver? The one word is loneliness. As a spouse, it’s horrifically lonely. The person you’ve been with for years and opened up to is no longer that person. It is sad and lonely because you’re married, but you're not. It’s a grieving process, and I’m mad. It’s repeating yourself endlessly, and having to do everything. As a caregiver, I’m not as patient as I think I should be. I’ve taken a lot of courses. I’ve taken care of so many people in my life but this is harder. The challenge is patience and acceptance. 

Has COVID changed things for you and your loved one? Has your loved one's care situation changed during COVID? It’s more confusing. I’m more tired. You can’t get help right away, can’t see doctors. Persons with dementia like to be social but can’t navigate Zoom/technology as well. There is greater loneliness and isolation. You just try to navigate.

What does your family member/loved one's care and living situation look like? Paul is trying to work part-time at Home Depot, though he is now having difficulty dressing himself and transportation is an issue. He works three days a week, then sleeps for 24 hours after that. I manage him, dress him, take care of him. It definitely feels like a sort of reprieve is needed sometimes.

How has this impacted your family financially? The whole process is a huge financial burden on a family. How do you support yourself? It’s your whole life crumbling down. We've sold a lot. We’re getting income from renting some properties to supplement the impact of the disease. As soon as he goes into long-term care, we’ll be totally depleted.

What would you tell a family or future caregivers who are new to this journey? You go through phases. Frustration. Every piece has its own timetable. It’s hard to plan for anything but you still have to live. Find a good support group, a confidante. Nobody knows unless they’ve lived it.

When and why did you first connect with the Alzheimer's Association? I connected with the Michigan Chapter when Paul was diagnosed. I’ve also connected with the Association in North Carolina. I’ve been Involved with the Walk to End Alzheimer’s as well.

How has the Alzheimer's Association helped? The Association has helped with information, research and meeting other people. They have great tools and conferences.

Have others in your family been diagnosed with Alzheimer's or dementia? Not yet, but I’m more committed to this for the future of my children at this point. For my son. Whatever Paul and I can do for this cause, we’ll do. I’m doing that for the future.
 

Alzheimer's Association

The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.

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