By Barbara Pierce
Dementia is a terrible disease, a terrible disease affecting the brain, with devastating consequences for those affected and their loved ones.
Over the years, it results in a steady downward decline in the individual’s ability to remember, to think, to make good decisions, to speak or understand language, to sleep, eat and control bowel and bladder. His or her needs will increase over time, eventually leading to 24-hour care.
I know this firsthand. I’m experiencing this with full force as my partner, with dementia, now needs much more care and attention. I’m his sole caregiver.
Caregiving is an all-consuming job. It takes its toll in so many ways, mentally and physically.
“You really can’t take care of him any longer. Caregivers have 10 times the risk of developing significant health problems,” I was advised by a psychiatrist who evaluated him when he was recently hospitalized for a steep decline.
One thing that’s been most helpful to me in my role as caregiver is the two monthly support groups I go to.
One is composed of five women and one man, all of us come regularly, all of us care for a partner or spouse.
The leader devoted her life to caring for her husband with dementia. When he died, she had nothing and was sadly lost for some time. Her purpose in leading the group is so that we won’t make the same mistakes she made. She strongly stresses the importance of keeping our lives going, separate from the person for whom we are caring.
That group began each meeting with a check-in, each of us talking about how we were doing on our journey as caregivers.
Then we discussed a topic each month, something to learn from. We learn from each other, as there are similarities in behaviors in the persons for whom we care. What one person finds helpful is often worth a try for another.
One subject most group members like discussing is ‘anticipatory grief.’ We’re all experiencing this; we know there is no way it will end well. Anticipatory grief is the experience of grief and mourning before an expected loss, a way to emotionally prepare for the loss.
We prop each other up in times of despair, cheer each other on for the valiant job each of us are doing, sorrow together for what each of us is going through.
The other group, at a library, has a different group of participants each time and a different kind of experience. It offers practical, helpful advice, like how to tend to financial and legal matters; community resources; how to handle problem behaviors.
Both groups are helpful; it’s good to know I’m not alone in this difficult task I’ve taken.
Learning about community resources is important, as are the tips from others on dealing with difficult behaviors.
Dementia caregiver support groups offer crucial emotional support, reduce isolation and provide a valuable source of practical information and education on dementia care. They empower caregivers with new skills, offer a safe space to share feelings and foster a vital sense of community and connection, ultimately improving competence and well-being.
Local support groups
We asked Katrina Kapustay, director of care and support, Alzheimer’s Association, Central New York Chapter, about local support groups.
“We have 30 different support groups in Central New York; many are virtual,” she said. “All are confidential. We have specialty groups, such as groups for spouses, caregivers of those in placement, early onset dementia, African American.”
Though no participants were willing to share details, Kapustay offered these descriptions from participants:
• “I’ve never believed in therapy. I didn’t think it could work. I was so surprised when I tried coming to the support group for the first time. I left feeling like I was the Grinch. I could almost feel my heart expanding. I can’t believe I waited all these years to do something like this. It helps so much during this time of my life to have a community and know that I’m loved. I have people who care about me. Having that, plus an opportunity for me to help others too, and share my own experiences, has made all the difference. Thank you for everything you do.”
• “I’m very grateful to the support group. I look forward to it every month. I go feeling down and stressed but leave feeling better and less stressed. The facilitators are amazing.”
• “Though my wife passed away after her six-year journey with the disease, my support group is like family to me and I love sharing with them.”
• “Everyone was friendly and knowledgeable and made me feel very welcome and supported.”
Try a support group; if you don’t like the one you try, try another. Each is different.
Advanced screening and registration are required for the support groups. Call 315-472-4201 ext. 227 for information and to register.