One Caregiver’s Perspective

Photo Sarah Whiting

A cold blustery day last December was reminiscent of a joyous wedding day 60 years ago. Yet now our 60th anniversary celebration had a tinge of the bittersweet. My husband has vascular dementia and I am his caregiver.

By education and clinical practice, I am uniquely prepared to be a caregiver. Before my retirement, I was a nurse practitioner in a home care program for elderly veterans with chronic medical conditions. As a practitioner, I saw the physical demands of caregiving. But being a professional who guides other caregivers is considerably different than being the caregiver.

I feel very capable making medical decisions and managing medications. I know the changes and losses that come with dementia. I know when conditions require immediate attention. That knowledge provides comfort and eases the path for me as cognitive decline progresses and performing activities of daily living becomes a challenge.

For both of us, role changes are a big part of adapting. I now do all the driving, take care of the finances, do the meal preparation, and handle all the tasks we used to share. The repetitive nature of answering the same questions, again and again, takes an emotional toll. Patience is a virtue — one I am not always capable of. That is compounded with the need to provide physical care.

An important aspect of caregiving is self-care. Rest and relaxation is paramount to sustaining the ability to give care. It extends my patience and resilience. It keeps me physically and emotionally more healthy. Some of that time is alone time, and some of it is social time. Both are rejuvenating. 

For two days a week, my husband is at an adult day care. With that time, I recently started to take fitness classes for the first time in decades. I am considering connecting with a group of women around political action. I plan to see more movies. Do more crossword puzzles in peace.

With dementia I am losing the life partner with whom I could  share problems, discuss issues, enjoy leisure. 

Yet despite the dementia, he is still part of my life — he is still a  companion. In days to come, that will no longer be true. 

Knowing that is part of my anticipatory grief — which is about  grieving loss as lifestyle changes occur. But it is also time given  to me to prepare. That and the life we have been given together is something to be grateful for. When death comes, I will have the memories of at least 60 years. That is reason enough to be thankful.