On a crisp, sunny, spectacular fall day in California’s wine country, I did a presentation for the Alzheimer’s Association of Northern California. The leaves were every color imaginable. The town of Yountville, a tiny and charming setting in Napa valley, was a gorgeous location. The community center where the event was held was filled.
The program had various interesting speakers. I spoke about about how to advocate for our aging parents in the healthcare system. I think I learned a lot more than I taught while I was there. Before I went on, I listened to a panel discussion of family caregivers, all of whom were taking care of a loved one with dementia.
One middle aged man was the primary caregiver for his mom. Another woman on the panel had a husband 17 years older than she, and she was his caregiver. There was an older gentleman caring for his wife and one was an older wife caring for her husband.
The discussion was led by my colleague, Deanna Randall, a remarkable, compassionate social worker with the Association, who is based in Northern California. What the caregivers had to say was riveting and totally
compelling. Any one of them could be us. We can read about this subject, but there is nothing like hearing about experiences from caregivers who have been in the trenches for years. All of those on the panel had been caregivers from the beginning, and some were reaching the end of the journey.
Their stories were moving, touching, sad and instructive. We had a lump in our throats hearing them. I want to share with you some of the most important things they said. Deanna posed the question, “what advice would you give to other families who may be just starting out as caregivers?”
One woman said that she hesitated too long in asking for help. She thought she could do it all. It just got too difficult eventually, and she found a great resource in the Alzheimer’s Assn. support groups. She still attended them weekly. She got respite care for her husband, too.
The man who was caring for his mom said he wished that he had more help from his family, but none was forthcoming. He finally also swallowed his pride and asked for help outside his family. He got it, though he had to also learn to deal with his very difficult and unpredictable mother.
Another woman on the panel said she wished doctors and others would stop telling her “take care of yourself”. She said she was always doing the best she could. She took care of herself when she was able to do so, and her job as caregiver allowed only a little of that.
The man who cared for his wife said he wished that he had not been in such denial when the diagnosis of Alzheimer’s Disease came, . He put off taking his wife on a trip for two years. By then, it was too late as she was unable to do it. He wished that he had seized the moment.
What’s the message for you and me in all this? Here are a few things we all need to remember, from the caregivers.
1. If an aging parent or other loved one is diagnosed with dementia, they may still seem okay at first. We can’t pretend that they aren’t going to decline. Get your loved one’s legal, financial, social and care planning house in order and do it right away.
2. Thinking you can take care of an aging parent with dementia all by yourself is fooling yourself. It’s a hard job that keeps getting harder. Plan for getting lots of help from every resource you can find. Swallow your pride and do it early.
3. Learn your community resources. You have to be come like a social worker yourself. Sources of help exist just about everywhere. It’s more of a challenge for an aging parent in a rural area, so think of whether you need to move that parent closer to the resources you’ll need sooner rather than later.
4. Ask family to pitch in. If they won’t help, ask friends, senior service organizations, community service agencies, volunteer organizations, faith-based groups, such as churches and synagogues, and neighbors to help you care for your aging parent as the needs increase.
5. Join a support group, even if you’re not a joiner. You can learn a lot from other people who are going through what you are going through. They can help you learn the ropes, give you a place to vent and help you avoid their mistakes.
Find more resources at AgingParents.com. Please help me and others do a better job at caregiving by offering your comments and suggestions here.
As I say often, we’re in this together, and we learn from each other about caring for our aging parents.
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