As Sid Halligan slipped deeper and deeper into Alzheimer’s disease, his wife Ginny realized that if she wasn’t careful, she might lose her own identity. He was 73 when they got the diagnosis, and 82 when he died last January. Until the last five months of his life, which he spent in a nursing home, Ginny took care of her husband at home.
She was always trying to learn as much as she could about the disease so she’d know what to expect. “I attended the Savvy Caregiver 6-week course sponsored by the Southern Maine Area Agency on Aging (SMAA),” says Ginny. “This educational piece helped us caregivers plan strategies to diffuse disruptive behavior or challenging situations.”
Ginny also joined a support group sponsored by SMAA. “I needed to go to the caregiver’s group,” she explains, “because we talked about a lot of things and you find out that you’re not alone.”
Meeting other people in a similar situation also gave her an opportunity to see the toll caregiving can have on people when they don’t or can’t take care of themselves.
Sid was a veteran and qualified for four hours of respite care each week. Ginny took advantage of the free time. “I needed some space and I needed to reconnect with my friends, because you can become very isolated. I play the flute in a community band and with friends. I knew if I stopped playing, I wouldn’t be able to pick it up again. I’d lose what skills and ability I had. My music is how I took care of myself. I could practice at home and then go play in my band and I had wonderful caregivers who stayed with my husband. Music is who I am. It was the “Ginny piece” that was away from my husband and I wanted to keep that.”
Kate Fallon is a counselor and caregiver specialist at Southern Maine Area Agency on Aging. She says Alzheimer’s and other dementias are so insidious that caregivers can quickly become overwhelmed with all the responsibilities and added stress. Unfortunately, many caregivers let things go too far before asking for help or even considering a support group. “Who has time, many of them will ask,” she says.
You don’t need a lot of time to take care of yourself emphasizes Kate. What’s important is that you create what she calls an environment of self-care. Little things can make a big difference.
Creating an environment of self-care
- Change the lighting so that it’s softer and more soothing
- Fill some vases with flowers
- Play your favorite music
- Move a comfortable chair into the sunlight
- Take five minutes alone to calm down and deep breathe
- Schedule appointments throughout the day as reminders to take care of yourself
- If someone offers to help you — with housekeeping, for instance — say yes and let go of thinking it needs to be done “your way”
- Meet the person with Alzheimer’s where he or she is at that moment. You’ll both probably feel a lot less stressed if your expectations are in line with his/her capabilities
Stop for a moment right now to think of some little things you could do that might make you feel better. As for taking time for yourself, even just a few minutes can make you “not feel so depleted or taken for granted,” says Kate.
Ginny made another important decision that helped both her and Sid. Except for the hours that a professional home care provider looked after him, she took him wherever she went. “We’d get up and do things like we always did,” she describes. “We actually did more. He was always so good about it, whether we would go to a community lunch or a garden club meeting or the grocery store. People would stop and talk to him, and when he passed there were so many people who came and honored him.”
Her heart goes out to caregivers who are struggling says Ginny. Everyone’s situation is different and what works for one may not work for another. She’s grateful that she was able to care for her husband and care for herself. “I did what I could and it worked for us. I don’t know what it would have been like otherwise. He passed and I miss him,” she says quietly, “but I still have my music. That’s what’s getting me through all this now. I didn’t lose it. I’m still Ginny.”
With the help of the Veteran’s Administration and the Southern Maine Area Agency on Aging, Ginny was able to carve out some time for herself with respite care. If you are a caregiver, Advantage Home Care provides an array of services, including respite care, that may help bring balance to your life.
Do you have a caregiving tip you’d like to pass along? Just fill out the comment box below. On behalf of all the caregivers who may benefit from your experience, thank you!