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An Honest Guide to Alzheimer’s Caregiving

AARP family caregiving expert Amy Goyer shares her experiences as an Alzheimer’s caregiver and offers advice on staying strong and “filling your tank.”

Amy Goyer

Family Caregiving Expert, AARP

How long have you been a family caregiver?

I’ve been caregiving for more than 35 years for my grandparents, parents and sister, and intensively caring for my parents for the past 10 years. My mom passed on four years ago, and my dad is now 94, has Alzheimer’s disease and we live together.

What are currently your main responsibilities?

I manage Dad’s finances and legal affairs, take care of the house, do most of the shopping, manage our caregiving team, and my sister and I coordinate his health care. I also provide about 80 hours per week of direct personal care — day and night.

What is it like caring for your father while working full-time?

Exhausting. I have to make tough choices between work and caregiving. My flexible work schedule helps (I often work at night after Dad goes to bed). Due to business travel, I’m both a live-in and long-distance caregiver.

What are some of the things you’ve learned and memories you’ll always have? I’ve learned that I can do anything, but I cannot do everything. I have to build a team. And sometimes caregiving will knock me down, but I get back up, so I view resilience as success. I have so many wonderful memories, like Mom’s sweet, contented smile at bedtime and singing with Dad.

Being a caregiver can be overwhelming. How do you deal with your stress?

Just like my car, I can’t run on empty. I have to fill my tank too, otherwise the stress eats away at me. It’s not selfish; it’s practical to do things that fill my tank, like exercising and taking time away from caregiving. Sleep is my number one priority.

Do you have advice on how to connect with a loved one or friend while caring for them?

Take time to listen, observe, understand and validate. Meet them at their level rather than trying to change or remind them . Focus on their quality of life; proactively create joy through music, animals, movies, nature, food, humor, hobbies, and sharing memories and affection together.

What are the most helpful resources you know about?

Learn from other caregivers with in-person and online caregiving support groups or forums. AARP has an online caregiving community, Family Caregiving website and a free “Prepare to Care” guide. The Alzheimer’s Association, Veterans Affairs and local area agencies also provide caregiving support.

What tips do you have for other family caregivers? Any specific tips for long-distance caregivers?

Embrace technology. Whether nearby or long-distance, getting organized lowers stress. Apps can help with team coordination, schedules, caregiving tasks, shopping, note taking and storing documents. Technology can also help with home safety, managing medications, socialization and so much more.

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