Seek support when caring for a partner with dementia
In the basement of Frank Pagura’s Elk Grove Village home is a woodshop, a respite from his role as full-time caregiver to his wife Rosemary, who was diagnosed with Alzheimer’s disease about five years ago. While Frank, 80, gets lost in the art of woodturning, Rosemary, 81, sews quilts in the next room.
“We can be by ourselves but next door to each other,” he says. “It was the thing that helped me the most during Covid.”
Caring for a family member with dementia or Alzheimer’s disease is challenging, but when someone is caring for a spouse it takes that challenge to another level.
Some 53 million adults in the U.S. are caregivers, and 12% of them are taking care of a spouse or partner, according to Caregiving in the U.S. 2020, a study by the National Alliance for Caregiving and AARP.
“If your spouse has a heart attack and dies, you feel loss and pain and eventually you get past it,” says geriatric psychiatrist Christopher D’Agostino, DO, chief medical officer and service director of geriatric services at Amita Health Behavioral Medicine Institute in Hoffman Estates.
“This is hard work, as anybody who has been through it knows.”
But dementia involves a protracted loss. “When you are losing someone slowly over time in a dementia-type situation, they look like the person they were, but they’re not,” he says.
Plus, the person’s behavior changes, putting additional stress on relationships. For instance, a person with dementia may say things that are hurtful, such as, “You’re not my wife; my wife is younger than you,” because they remember their wife as a young woman, D’Agostino says. Or they may act aggressively toward their spouse or use foul language.
“Caregivers can feel a lot of anger or irritation,” he says. “They can feel frustration that they’re stuck with this situation and [feel like], ‘This is supposed to be a good in my life, and I’m listening to someone who swears at me all day.’”
The daily stress of caregiving plus the strain on a marriage can make a dangerous stew.
“Talk to a counselor to help you process what you’re going through and normalize your experience,” D’Agostino says. “As folks become more and more isolated, we often see a lot of depression.”
Symptoms of depression include loss of interest in activities you normally enjoy, sleep problems, inability to concentrate, and negative thoughts such as wishing you were dead or thinking your partner would be better off without you.
If caregiver stress and depression interfere with daily life, speak with a doctor, because depression can be treated.
“If somebody is being the tough guy and thinking, ‘I’ll just take care of this all the time. Everyone else is busy, and I don’t need help,’ they will burn out and be at risk of depression. Or the patient will be at risk of elder abuse,” D’Agostino says. “We cannot have that. This is hard work, as anybody who has been through it knows.”
Finding an outlet
Caring for a spouse with dementia or another chronic health issue can take a serious toll on your mental health if you don’t take time out for self-care. Taking a walk, engaging in a hobby, or meeting a friend for a quick cup of coffee may seem like luxuries. But any activity that helps you relax and gives you a break from caregiving is necessary to sustain your peace of mind.
“Taking care of yourself as a caregiver is really one of the best gifts that you can give to your [spouse], and it’s critical you do so,” says social worker Catherine Stowers, caregiver program manager of Pathlights, an aging agency in Palos Heights. “Find a way to tap back into the things you enjoyed doing before caregiving became a significant part of your life.”
The shifting of roles — maybe your spouse handled finances, and now you do — can be a big source of stress, says Peggy Rubenstein, manager of care consultation for the Alzheimer’s Association Illinois Chapter.
To make the learning curve less daunting, she recommends asking a friend or relative to assist you or teach you how best to approach your new task — be it bookkeeping or cooking.
“The best thing you can do is let people know about the diagnosis, where your loved one is in the journey, and how they can help you,” Rubenstein says. Friends might be able to offer a short, one- to two-hour visit while you go to lunch or finish household chores.
Talking to other caregivers can be helpful. Frank and Rosemary Pagura belong to a support group through the Alzheimer’s Association Illinois Chapter. “Some people have questions; some people have answers,” Frank says. “A support group is a good way to share information.”
Frank has figured out other ways to take breaks and de-stress. He works out at the park district early in the morning and arrives home as Rosemary wakes up. If he has a bad day, he calls one of his children, Frank Jr. or Kathryn, who are his immediate support group, to take over for a while.
Although Rosemary’s diagnosis “put a monkey wrench in everything” that Frank envisioned their retirement would be, he has learned to live for the moment and try to enjoy every day. “Exercise and woodworking are my outlets,” he says. “They help.”
What’s your outlet? If you don’t have one, look for an activity that keeps you fully engaged and schedule time for it. Doing so will prove worthwhile for you and your spouse.
Respite and Education for Caregivers
Help is available in your community. Here are a few options.
Helpline. Caregivers can call the Alzheimer’s Association 24-hour helpline at 800-272-3900 for emotional support or to be directed to local support groups and educational programs.
Respite care. Through state-designated caregiver resource centers, caregivers can explore a variety of free, short-term respite options — from a few days of room and board for their care recipient at a nursing home to adult day programs and trained homemaker services that provide in-home care. To find a caregiver resource center in your county, visit the Illinois Department on Aging’s website at illinois.gov/aging and search for “caregiver resource centers.”
Stress-relief training. Pathlights, a caregiver resource center, offers a free stress-busting program for caregivers three times a year. Open to southwest suburban residents, the classes focus on dementia and teach stress management, relaxation, and problem-solving strategies. pathlights.org