Rob and Ginny Underwood

When one decides to become a parent, it is understood that being a caregiver is part of that journey. Caring for that child will be the No. 1 priority. We make mistakes, we learn from them, and then make more mistakes. And we know it’s part of the life we chose.

What might be unexpected is when we must become a caregiver for our spouse or parent. How do we navigate this unexpected bend in our journey? Whom do we ask for help? When is the right time to speak up?

One of our volunteers here at Memory Matters asked these questions when her husband was diagnosed with Alzheimer’s disease, and she became his primary caregiver. She chose to share their journey in hopes that it might help others. Here is her story, in her own words:

“Looking back, I can see how my husband’s illness was taking its toll. At first, it was small mistakes and some confusion. We’ve all experienced that; it comes with aging.

“One day it became abundantly clear that I needed to be more hands on with his care. I did all the driving, made the appointments, managed his medications, and helped him with his daily care. … At times it was frustrating and annoying, for us both.

“Trying to do my best, not wanting to burden my children with my concerns about doing the right thing, I felt very much alone and overwhelmed. … I started looking for resources to keep my loved one at home for as long as possible.

“I was familiar with Memory Matters and reached out to them, with a view to enrolling Rob in one of their programs. I was invited to attend a support group and, although I felt that I had no time to fit this in, I went along.

“At my first meeting I sat and listened for the most part. I learned so much! First and foremost, that I wasn’t alone in my struggles. … Most importantly, I learned that our journey was one of a kind. Not all advice and suggestions applied to our experience, so it was important to listen and ask questions about everything.

“When I regaled my newfound knowledge, my husband asked me when he could get some similar support! That was a godsend, because I was nervous about approaching the subject of him going alone to such a program.

“Rob enrolled and his twice-weekly classes were the highlight of his week. It was there that he regained some of his independence. It also brought a change in scenery, new friends, and stories to share with me.

“Meanwhile … I learned not to take everything personally, to blame the disease, not the man; to forgive myself when I became angry or impatient; and to forgive Rob when he did the same. While it was never easy, I did become more confident that my decision-making and actions had merit.

“Eventually, when Rob did have to move into care, I knew that the decision came from a place of love, understanding and compassion.”

Joy Nelson is the director of marketing and communications for Memory Matters.