Dear Carol: After seven years of living with early-onset Alzheimer’s, my 59-year-old husband passed away. Before and during the early years of his diagnosis, I was also caring for his parents who both had dementia. I’ll be honest and say that it was never a happy marriage. He was controlling and jealous so my feelings of having no identity other than wife, mother and caregiver are longstanding.
I have a good relationship with my children, but they are grown and don’t live nearby so not even being an involved mom and grandma keeps me occupied. Our friends were mainly my husband’s friends, so who am I now? I don’t know. I work online and I’m happy enough with that, but the job doesn’t provide me with any personal interaction or identity. What do I say when people ask about my current interests? “I wish I knew” isn’t a good response. — SK.
Dear SK: Caregiving, especially dementia caregiving, can be nearly all-consuming, so feelings of being at loose ends when those responsibilities end are not unusual. For someone who lived in a marriage that didn’t allow for a separate identity, those feelings can be compounded.
Sometimes even in happy marriages, people can realize after the loss of their spouse that while they enjoyed being a part of a couple, they no longer know how to live with the identity of a single person. This adjustment can be made harder when, like you, the friends were all joint or mostly that of the deceased spouse.
There are countless opportunities to volunteer with caregiver groups if you want to stay involved in that area. From what you said here, though, I’d suggest considering other options, at least for the time being.
Sometimes, these identity feelings can be overcome simply by trying out different activities through religious organizations or those that represent other interests. Do you enjoy art? Local art organizations can often use volunteers to promote shows, help people with tours, usher at performances or raise funds.
If that doesn’t interest you, you could consider joining an organization that collects school supplies for kids. Or one that concentrates on food drives. Or one that tutors young children. Much depends on whether you enjoy being with people physically or if you prefer behind-the-scenes work. You can research your own community for nonprofits and see what opportunities interest you.
Many longtime caregivers benefit from at least short-term counseling to help reconfigure their lives, and this would be my suggestion for you, as well. My reasoning is that you’ve had so many years of not being able to expand your personal interests that some help climbing out of the rut could be an eye-opener. Once you’ve begun to work with a professional and you feel ready, this person could help you explore interesting activities that will help you discover who you are beyond being a caregiver.
Wishing you the best, SK. You aren’t the first to ask this and you won’t be the last.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached through the contact form on her website.