Alzheimer’s Caregiving: Family Support

My nuclear family is blessed to have a lot of our extended family still living in Birmingham. My parents still live in the house they bought in 1969 when we moved here. Harvey’s parents were living in the house they built before Harvey was born, and moved into a nursing home together towards the ends of their lives, also in Birmingham. Our daughters grew up being very close to all four of their grandparents, a blessing we all treasure.

It was on a family vacation to Costa Rica when I first thought something was wrong with my husband. For their fiftieth anniversary, my parents took me, my two sisters, our spouses and children on an adventure vacation. There were fifteen of us in all. We had a blast! But Harvey just couldn’t keep up with the schedule our guide outlined for us each day. I was frustrated and complained to my parents and my sisters about Harvey’s lapses. They were the first people to hear me and listen to my concerns. They didn’t dismiss my worries, but were my first pillars of support.

About two years into Harvey’s illness, I decided I wanted and needed a support group. Because I was still working, I needed a support group that met at nights. There were only two in town that met that criterion, and one of them met at a church just up the street from my parents. So twice a month, Harvey and I would have dinner with my parents, then I would leave him under their care while I went to the group.

Mostly, my parents and sisters were simply present for me. The sister who still lives in town even accompanied me when I visited prospective memory care facilities. She and her family often entertained family gatherings at their pool, and Harvey was always welcomed. His limitations were always accepted, making it easy for me to feel comfortable at these gatherings.

Our daughters were fourteen and seventeen when Harvey was diagnosed, and were not immediately involved in caring for their father. As the disease progressed, however, both daughters helped when they could, with what they could.

Harvey’s brother lives in a neighboring state so was not able to be as involved in Harvey’s life. However, he took on sole responsibility of caring for both of their parents as their cognitive and physical health declined. Harvey could not contribute to their care, and I was not called upon to shoulder any of that burden. Once Harvey was in a memory care unit, his brother, who was already regularly visiting their parents, began visiting Harvey as well.

I know I was blessed to be surrounded by such a loving and supportive family. And I realize not all caregivers of someone with dementia have that luxury. I’ve heard many stories of absent family members. The sister that finds it too hard to visit Mom. The long distance brother who doesn’t think anything is wrong with Dad. The husband that refuses help offered by his sister-in-law. Toxic families can make a hard situation like dementia almost unbearable.

Who needs toxic relationships when all you want is time for a hot shower?

So count your supportive family members as the team members they are when you envision your caregiving team. And offer words of gratitude to them and to the Universe.