We are proud to commemorate World Alzheimer’s Day with an interview with Carolyn Haynali, the founder of The Caregiver’s Army. Carolyn’s late husband Chuck was diagnosed with Alzheimer’s disease in 1994. After caring for Chuck for 10 years, Carolyn started a petition to support research that could lead to a cure for Alzheimer’s disease. This petition and online support group eventually became The Caregiver’s Army.
On September 21, 2000, Congressman Edward Markey of Massachusetts invited Carolyn to Washington, D.C. for the declaration of the first annual Alzheimer’s Day. When Chuck passed away, Carolyn made a vow to him that she would fight Alzheimer’s disease for the rest of her life. Today, Carolyn honors Chuck by continuing to add signatures to her petition, and helping people with Alzheimer’s and their family caregivers.
Carolyn graciously answered a few questions about Alzheimer’s and family caregiving. Her insights are below.
You have a petition with approximately 200,000 signatures, asking Congress to find a cure for Alzheimer’s disease. When did you decide to take action against this disease?
When I took care of Chuck, I felt like I couldn’t get help. I wanted to do something that would help others. It began by passing out flyers around town. I would ask managers of restaurants and other business owners if I could hand out flyers at their locations. When we had 20,000 signatures [on the petition], Congressman Markey called me to invite me to Washington.
What happened in Washington?
I was asked to speak. I told Congressman Edward Markey and the Congressional Alzheimer’s Task Force about the things family caregivers need, like prescriptions, respite care, and education. After my speech, I gave him a ribbon with a rainbow and a heart on it, representing the single caregiver, and a gold bow binds all the caregivers together.
Now that acts are being carried out by government to cure Alzheimer’s disease and provide respite to family caregivers, how does that feel?
I think it’s great! We need help keeping our loved ones at home instead of putting them in a home. I would have loved to have that kind of help. I have a dream that someday there will be a place for people who don’t have a lot of money, where they can go and take care of their loved one. It would be called Heaven’s Meadows, A Place To Rest. It would be a facility where people can get help.
What were the most difficult parts of caring for someone with Alzheimer’s disease?
The most difficult part for me-is that he was looking for his wife and I was right in front of him. He was looking for a wife he knew when he was forty. When I tried to kiss him, he turned away. I was growing old with someone who didn’t know who I was.
What advice would you give to family caregivers of a loved one with Alzheimer’s disease?
I always talked to Chuck as if he knew what I was talking about, and that seemed to help. Instead of arguing with him, I agreed with him. I also looked him in the eyes and hugged him. I felt that somewhere deep down inside, he knew that I loved him.
Caring for someone with Alzheimer’s also makes you learn compassion. You do little things to make them happy. Tell them you love them. Play music that they like. Bring them their favorite food or deserts.
It’s also important to take care of yourself. Keep a journal of your day and your feelings.
Above all, if you need a break, find respite care.
What would you tell someone who has just been diagnosed with Alzheimer’s disease?
I know when I first heard those words, I didn’t believe it. I would go to your local Alzheimer’s organization for help. Research the disease. [Alzheimer’s] is a progressive disease, and sometimes it happens slowly, sometimes it’s fast. Be upfront with yourself and your loved one about this disease.
Another important thing to do is to have all your directives in order, like your will, living will, durable power of attorney for health care, or Advance Directives and (DNR) Do Not Resuscitate Orders. When something like Alzheimer’s disease happens, you will be prepared. Chuck and I did all this before he ever got sick, and it gave me peace of mind, knowing that I was doing something he wanted.
What is the best way to be supportive to a family affected by Alzheimer’s disease?
Caregivers need respite care. They need breaks and don’t take them. Know that family caregivers have anxiety about leaving, but offer to help. When I would go to the grocery store, I would worry about Chuck. I also worried about him when I was home. I lived in the country. If something happened, how would we get help? I was overworked and needed to take a break. It was hard, but neighbors and friends offered to help me, and I have to admit, those breaks helped me.
You can also offer to help with specific tasks. If people asked me how they could help, I would tell them I didn’t need any. If someone asked me something specific such as if they could sit with Chuck while I went to the store, I was more likely to say yes. You need to be persistent and you need to be specific.
Also, keep being a friend. When there is an illness, [people] stop calling and visiting. Chuck and I were very active until he got sick. Then we didn’t go anywhere. Having visitors and friends always helped him and made me feel less lonely.
Many thanks to Carolyn for letting us interview her. Feel free to learn more about the Caregiver’s Army or learn more about respite care and family support from SYNERGY HomeCare. We also provide specialized memory care to people with Alzheimer’s disease and dementia.
To contact the the Caregiver’s Army, please contact Carolyn Haynali: