You Are So Strong

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I never really knew how to respond when someone said, “Renée, you are so strong.” “Thank you”? “Not really”? “I know”?

I understood the comment. They were trying to imagine themselves in the same situation—having a spouse who was living with younger-onset dementia. And it was meant as a compliment. Was I strong, or was I just doing what needed to be done? What other option was there? I couldn’t walk away. I think that most people would do the same in my position.

But I do acknowledge that I am a strong woman. I was raised to be independent, and for that I am ever grateful to my parents. They actually raised three strong daughters; each of us has carried our individual burdens with an inner fortitude, and hopefully, grace.

I am also somewhat of a perfectionist. I like to be right. Yes, I’m the girl that corrected your grammar and did not do well in group projects. This tendency served me well in school, especially in medical school. (I think all physicians must have a perfectionistic streak in them. The job just demands it.)

However, being a perfectionist wasn’t the ideal approach in providing care for someone living with Alzheimer’s disease. Oh, the planning ahead and gathering of information so that I could make good decisions for Harvey’s care served us both well, I guess. But I was far from perfect in delivering that care.

The caregiving principle “It’s better to be kind than correct” was one of the hardest lessons to put into practice for me. I knew it was the disease. I knew he couldn’t help it. It still made my brain go haywire whenever he said or did something illogical.

For example, I remember that fairly early in the disease, Harvey became fixated on needing an expensive new digital camera. I knew that he would never be able to figure out how to use it, so it drove me crazy to think he would spend our money this way. I really obsessed over it, discussing it with my counselor even. The counselor’s response was, “What’s the harm?” So I breathed a deep sigh and let him buy it. I asked a friend to teach him how to use it, but it never stuck. I was able to give the camera to our oldest daughter for her to use, so, silver linings.

For a more thorough discussion of “It’s better to be kind than correct,” see this blog post.

And along with perfectionism, I have the tendency toward inflexibility. I know how things are supposed to be. I work hard to get them that way. And when my carefully crafted plans fall apart, or even get just a little altered, I can become angry, simmering in my own juices.

Being flexible is a necessity when dealing with dementia, and I think I got better with this as time passed. There just was no other option. I could make all the plans I wanted, but I also knew that a glitch in those plans was possible. I would have to adjust those plans and create a new future.

Another day, early in the disease, Harvey had an appointment at UAB, the teaching hospital in our city, to enroll in a drug trial. When I called home to say I was leaving my office and to be sure he was ready, there was no answer. He wasn’t home when I got there, and I called UAB, through tears of frustration, to reschedule the appointment. The nurse was incredibly understanding and said, “Oh, that’s fine. These things happen when you are dealing with dementia.” Yes, they do!

My strength through the eight years of Harvey’s illness was the result of who I was fundamentally, but I was also strengthened by the friends and family who supported us. Taking care of myself physically, emotionally, and spiritually gave me even more resilience. (I have multiple blog posts on these topics if you missed them!)

“We can do hard things.” —Glennon Doyle