My Letter to Caregivers in Dementialand

Back in November, I had a really bad day. Our cat, Macy, had been at the vet’s office for about a week when we had to make the decision to put her down. She was in kidney failure and her back legs had stopped working. My husband and I planned to say goodbye in the late afternoon.

Right before that dreaded appointment, I had an obligation of another type. I had been asked to present to a support group sponsored by the Alzheimer’s Association. Normally, I have at least some idea what I am going to talk about when I walk into something like that, but on that day I honestly hadn’t even thought about it. I was a bit of a mess. Correction. I was a trainwreck.

I took a different approach to presenting that day. I sat back in one of the comfortable chairs in the chapel that held the meeting and asked each person to tell me why they were there. Most were spouses of individuals with dementia, and most were caregiving for their loved ones at home. All mentioned something about being exhausted or stressed.

After they introduced themselves, I decided to focus on demonstrating some skills that are suggested for working with those toward the end-stage of dementia. I showed some techniques from Teepa Snow’s Positive Approach to Care (worth Googling if you’re not familiar) and emphasized using the hand-under-hand method for assisting with feeding.

Maybe it was just that I was having a really crappy day and was struggling to focus, but I stopped in the middle of showing them the “correct” way to assist people with dementia in eating.

I said something like this: “I know this seems like it takes a lot longer than just trying to cram a spoon in somebody’s mouth. And it does. And I know you’ve got other stuff to do. You’ve got laundry, dishes, paying bills, mowing the yard. And although this method sounds great in theory, do you really have an extra 15 minutes a day to do it this way? And is your own food gonna get cold while you’re working this method with your loved one?”

I didn’t plan to say this. And I’ve never really stopped a presentation before to interject a statement like this, but somehow it worked. They felt listened to. They felt like I got them.

From that point forward, they tuned in and heard what I had to say. I think it might have been because I made it clear that I had listened to them. It was a good reminder that sometimes when I work with caregivers I do too much talking and far too little listening.

For the record, they bought into the hand-under-hand idea for feeding and wanted to learn more. Most of them told me they were going to try it with their loved one. I actually think they bought into the idea more strongly after I acknowledged the reasons it would be challenging to fit it into their daily routine.

A couple of years ago, I presented to a similar group. A man who was likely in his 80’s came up to me after the meeting.

He said cheerfully, “Dr. Eshbaugh, I am so glad you came here tonight to tell us all the stuff we are doing wrong so we can do it right.”

He wasn’t being sarcastic. He meant it as a compliment. He was genuinely grateful and appreciative. But it broke my heart. And I felt like a jerk. I don’t want to give caregivers the impression that they are doing it wrong.

I came home that night and wrote a letter to caregivers. I wanted to send a copy to that gentleman, but I didn’t have his name or address, so I kept a draft of the letter on my computer. And, to be honest, I really wrote the letter for myself because I realized that somehow I had gotten so focused on teaching dementia caregivers techniques and skills that I had stopped listening.

Here is the letter:

Dear Caregiver:

Your loved one has dementia, and here I am the “expert” trying to tell you how to deal with it. I don’t mean to come off as being critical. I may have some knowledge that you don’t have, but I know I don’t get your unique situation and all the challenges in your life.

I spout lots of information about how to deal with certain “challenging” behaviors, but I know not all of them will work all the time. And that’s not because you’re not doing them right. It’s just because dementia is awful. I hope that out of the 1000 tips I give you, maybe one or two will make your life just a little bit easier.

I’m not going to tell you that there’s some magic cure for dementia. If someone tries to sell you a magic cure in the form of a pill, vitamin, or diet, they are full of crap. Run the other way. I wish I had some magic to sell you, but I don’t.

What I’m selling isn’t as fancy. I want to give you an arsenal of strategies (new ways to think, different techniques to try) that will help you and your loved one to live with more love and laughter on this journey. That’s the best I can do. 

I also want you to know that you are a resource for me. At least once a week, a caregiver will tell me some strategy that they use in negotiating dementia and I am in awe because it’s brilliant. And I want to know those stories because they can help me to help other people.

I’m up to date on all the evidence-methods for working with people who have dementia. I read research article after research article, and I even publish research articles of my own. But unless I can continue to connect with caregivers, I’m really pretty useless.