If I have a public speaking engagement that ends at 8 pm, my husband Bill knows to expect that I’ll leave the building at 9:30. In the past, he’s ridden along to help with the set-up and technology. He’s usually sitting on a table in the back of the room patiently when I chat with people (mostly caregivers) after my presentation.
When I finish speaking to the group, I usually say I will hang out for a few minutes in case anyone has questions or wants to chat. It’s typical for a several people to approach me. They are almost always too kind.
Recently, a caregiver said my presentation made him think I had to been looking in his windows for the past few months. Strangely, it was one of the nicest compliments I’ve ever received. (Even better than the woman who once came up to me and said, “When I first walked in, I saw the way you looked and thought you wouldn’t know anything about Alzheimer’s. But it turns out that you do.”)
After the compliment comes the question. It’s presented in a form of a story–sometimes a very long story–about their loved one with dementia. They tell me what’s going on, and then there’s a pause. At this pause, I am supposed to jump in with a solution.
Sometimes I present a few potential solutions, but they tell me they’ve already tried those things. Or I give them some options, and they tell me why those options aren’t possibilities. I stand there, wracking my brain to come up with a solution. I feel like a failure when I have nothing to offer. After all, I am a supposed “expert.”. I am disappointed in myself when the best I have is “Gosh. I don’t know.”
My husband, Bill, often silently observes these situations as he waits for me. When we leave, he can tell I’m second-guessing the advice I’ve given people–wishing I could have come up with something better.
Last year, Bill listened to me chat with caregivers about their specific challenges and then said to me, “You know, those people don’t always want you to solve their problems. They just want you to acknowledge it’s hard and they’re doing everything they can.”
As hard as it sometimes is to admit your spouse is right, my spouse was right. Sometimes people just want an “expert” (please note the quotation marks) to acknowledge that they are dealing with a difficult situation. Maybe, just maybe, it’s not my job to find a solution to every problem. Maybe there is not even a solution to find.
In Dementialand, as in life, there are problems that can be solved. A woman once told me that her mom, who had dementia, had stopped using the bathroom at home because she couldn’t find it. The woman was able to find a solution (at least temporarily). She made signs to put all over the house with large arrows to indicate where her mom would find the nearest restroom. It was so simple that she doubted it would work, but it did work. In fact, she eventually went to Office Depot to have professional-looking color signs printed because she decided the ones she made on construction paper were tacky.
Then there are challenges that are not solvable. We must cope with these challenges because there are no solutions. I am often asked how to get someone with dementia to stop asking the same questions over and over again. (It’s somewhat ironic that a question I am asked over and over again is to how stop people from asking questions over and over again.) And I don’t have an answer. All I can do is acknowledge that it is frustrating for even the most patient caregiver to have to answer the same question repeatedly. The best advice I can give you is to take a deep breath and attempt to answer that question in the exact same tone of voice you did five minutes ago.
It’s great when a problem you encounter in life is solvable and the solution is quick, easy, and cheap. Last month, my car wouldn’t start. It was a bit of a crisis because my husband was out of town, so I was stuck with no wheels for a day or so. When we realized the problem was a dead battery and got a new one, the problem was solved. Life was back to normal.
There are other problems in life that aren’t so solvable. For instance, our rat terrier mix, Gus-Gus, isn’t always great with small kids. He rarely meets an adult that he doesn’t want to French kiss, but kids aren’t his jam. After a few years of trying to solve this problem, we realized it’s something we just need to cope with it. We can’t seem to solve this problem without putting kids at risk (and I’m not about to ask to use my friends’ kids as training tools), so Gus-Gus gets a ticket to the bedroom with the door shut when kids visit. We cope.
If you think about it, a lot of problems demand coping skills. A man who is annoyed that his wife who has Alzheimer’s paces around the house all day? There may be no solution for her pacing. He may need to acknowledge it frustrates him and learn to cope with it. A woman who makes a clicking noise with her tongue obsessively all day? Her caregivers may have to find a way to block it out. A man who can’t remember his kids’ names? That’s not a solvable problem. It’s part of the progression of dementia. You gotta cope with it.
We can’t change the course of diseases like Alzheimer’s. As of 2016, Alzheimer’s itself is not solvable. Remember the prayer that asks God for the serenity to accept the things we cannot change? If God made a list of those “things we cannot change,” I would think He might put dementia near the top.
As for those people who want me to give them advice on the challenging aspects of dementia, I’ve found that saying, “Wow…that’s a tough one. It must be pretty frustrating for you” goes a long way.
Sometimes I have to acknowledge that I can’t solve everyone’s problems. Heck…a lot of times I can’t even solve my own. Sometimes that’s because I lack the knowledge, experience, and insight. However, there are other times I can’t solve problems because there really aren’t solutions. When that’s the case, it’s about taking a deep breath and weathering the journey.