By Wendy Warren (and daughter Kimi Baker)
I will never forget the day my husband didn’t know who I was for the first time. I think that’s probably one of the worst parts of Alzheimer’s disease – when it robs the patient of their ability to recognize their loved ones.
That day, my husband looked at me and told me I looked just like his wife. I fought back tears, my heart breaking, and asked him if she was pretty. “Oh, she’s really pretty, and she’s so nice to me!” Even though he didn’t know the person in front of him, he knew — and loved — his wife. I couldn’t help but smile.
Gary was 63 years old when he died from Alzheimer’s disease and only 59 when he was diagnosed. I didn’t realize it at the time, but every 65 seconds someone in the United States develops Alzheimer’s disease. Everyone seems to have an idea about what Alzheimer’s disease is: forgetting where keys are, not remembering someone’s name, getting lost in the woods. But not a lot of people truly understand what Alzheimer’s disease really is — and what it means for the person who has it as well as for their caregivers.
Alzheimer’s disease is the sixth leading cause of death in the United States, killing more people than breast cancer and prostate cancer combined. And between 2000 and 2015, deaths from the disease increased 123 percent. Those are some pretty staggering facts for a disease that isn’t well understood by most people. I know more about the disease than most people, and I still find myself shaking my head in disbelief at the facts.
Gary hated the disease and was embarrassed by its symptoms. Because of that, he insisted we tell no one. But like any illness, the more we know about it, the better its victims — and their caregivers — can be understood. While I am no expert, and I made plenty of mistakes as I bumbled my way through my experience as his caregiver, I did learn a few things along the way.
First, you must remember that Alzheimer’s disease is different for every patient. There is no one way the disease manifests itself, and each case is unique to that person.
Secondly, the patient is not purposely doing things to irritate or frustrate you. The disease takes away their ability to plan things, to explain things or to connect consequences to their actions. They may not be able to follow sequences or processes. Do not blame them or take your frustrations out on them. It will only lead to more frustration and breakdowns.
Most importantly, you cannot bring them into the “real world.” Their brain is damaged, and that is their reality. To survive as a caregiver, as someone who loves someone with Alzheimer’s disease, you must meet them in their world.
Do not remind them that you’ve already answered their question 5, or 10, or 15, times. If they knew that, they wouldn’t have asked again. You will never win an argument with an Alzheimer’s patient. If they say the grass is blue, let it be blue. If birds swim in the bay, let it be so.
And choices? They’re really hard for an Alzheimer’s patient. Instead of asking them if they want chicken or fish, say “Let’s have fish today.”
Conversations are often hard, especially ones filled with questions. Perhaps instead of asking a lot of questions try relating some shared experiences. Just remember that when you’re doing so, don’t begin with “Remember that time…?” Instead, try “I was just thinking about the time…”
I think the best advice I can offer anyone facing this disease as a caregiver is that patience and humor will help get you through the long and painful journey. At times, they were the only things pulling us through. If you’re a caregiver, understand that most people won’t know how to help or what to offer, but most will want to try. Let them. Do not be afraid to call on family, friends, neighbors or anyone who can lend a hand, even if it’s just for a minute. And if you know a caregiver, please reach out and offer a listening ear, a meal or time for respite — anything to lessen their load.
There also are professional organizations that can help. The Alzheimer’s Association has a number of programs and experts who can assist you with resources to navigate your way through. In September of 2020. hundreds of people will be coming together in Traverse City for the Walk to End Alzheimer’s. Learn more about the walk and the organization’s other programs at alz.org, visit our local chapter or call 800-272-3900.
By the way, in the time it’s taken you to read this article, three people have developed Alzheimer’s disease.
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