Don’t be an island.
That’s good advice for anybody – but especially for millions of caregivers who have let friendships and acquaintances slide as a result of caregiving obligations.
It doesn’t have to be that way.
Maintaining a social life is easier said than done, for sure, but there are strategies to avoid being cut off from the world outside.
Isolation and Depression
According to a study published in 2017 in Frontiers in Psychology, social isolation can lead to depression, memory and attention problems, heart disease, high blood pressure and stroke.
The study found that caregivers who are most socially isolated are women who are less educated and in poorer physical health. Age isn’t a factor.
“Age has nothing to do with it,” agrees Jill Gafner Livingston, a Certified Dementia Practitioner and Certified Alzheimer’s Disease and Dementia Care Trainer. “As people age, they socially isolate because they aren’t physically able to do as much — older people tend not to drive at night. Younger people who are caregiving get a different feeling about themselves; they have a burden that makes them feel different from others.”
Caregivers withdraw because they don’t feel like socializing, they can’t afford to socialize, friends stop including them in activities, they feel guilty if they’re enjoying themselves while their loved one is suffering, and they may feel resentment toward others whose lives seem easier, says Gafner Livingston, who teaches caregiving classes (see below). “Those who care for someone with dementia have a higher risk for depression. It can make you insane.”
Gafner Livingston wrote a book on caregiving and became a caregiver trainer after going through a 20-year ordeal of caring for a husband with early-onset dementia. Bob died in 2012. The couple had young children and watched their finances and social life evaporate. It wasn’t easy.
“We were trying so hard not to go bankrupt,” she says. “Financially you don’t feel like you are where you should be, and socially you don’t feel like you are where you should be. Eventually, it becomes personal.”
Livingston says caregiver isolation isn’t about being stuck in the house or not having free time.
“When we’re talking about social isolation, it’s personal. It’s internal,” she says. “I don’t always think people are socially isolated because they can’t find respite. Their soul is sad. There are so many emotions, guilt being the primary one. I meet with thousands of caregivers a year and 100 percent put their hands up if you ask if they feel guilty – guilty for spending $20, guilty for going to the doctor. They feel guilty for having thoughts like ‘I hope this is over soon.’ A lot of guilt holds you back.”
Break the chains of social isolation
Gafner offers these ideas for coming out of the funk of self-isolation:
Let friends know that you want to be included.
If getting out of the house is near impossible, invite people in. Supply the wine and have people bring snacks.
“When Bob got sick, things like playing euchre and bowling fell away. We had friends go in another direction. Eventually, we had nobody,” Gafner says. “When I started to come back, it looked like I had to be the social coordinator. Twice a month I’d have the girls over. My friends learned that when I had time, I’d do it. Friends want to hear from you.”
Start the day with 15 minutes of activity that encourages positive thinking.
“If you’re going to offset negative thoughts, one way to do that is get active — not necessarily exercising,” says Gafner Livingston. “Walk a mile up and down the stairs. I used to take a single-person trampoline and jump. If you can create some sort of energy for 15 minutes, yes, 15 minutes of energy will change the way you feel and affect the way you think.”
Talk to a stranger in the market.
“Say something positive to a perfect stranger, like ‘I like your haircut,’” says Gafner Livingston. “They don’t have to know your burden.”
Seek support from other caregivers.
While Gafner Livingston did not list caregiver support groups as a counter to caregiver isolation, they can be a powerful way to connect with others in a similar situation.
Dorothy Moon runs caregiver support groups at the Dorothy and Peter Brown Jewish Community Adult Day Center in Southfield. The groups primarily serve caregivers of people in all stages of dementia.
“The power of people just coming together with other people who in some shape or form identify as caregivers is huge. When you see people come together, even talking for an hour with someone who says, ‘I know what you mean, I’m there, too,’ is powerful,” says Moon.
The conversations that spark in support groups often reinforce the importance of doing something other than caregiving, such as giving yourself permission to meet a friend for lunch, exercise, or go for a walk because you have to keep yourself healthy, she says.
Moon suggests that caregivers volunteer somewhere if they have time. It’s a good way to focus outward and to meet others.
Speak kindly to yourself.
Debra Mittelbach, MAOM, CDP, CALD, runs dial-in and onsite caregiver support groups for the Alzheimer’s Association. Isolation is what happens when the caregiver’s needs end up at the bottom of their to-do list, she says.
“A lack of social opportunities can lead to depression if it already isn’t there. If you aren’t filling your bucket with meaningful experiences that make you feel good, the tendency is to lose your self-worth, and there’s no desire to be engaged,” says Mittelbach. That leads to poor caregiving and statistically speaking, a risk of dying before their loved one.
If the caregiver cannot get out of the house, the dial-in support group is a good option, says Mittelbach.
“People in support groups are not self-isolating,” she says. “Even with dial-in, while the loved one is in another room, they can step away and create a hub of ‘I’m not alone.’”
Two Upcoming “Caregiving Survival” Workshops
Jill Gafner Livingston will be leading two free seminars on “Caregiving Survival Plus Caring for the Elderly with Dementia:” 9 am-11:30 am Thursday, March 12, at the Ypsilanti Senior/Community Center, 1015 N. Congress, and 9 am-11:30 am Friday, March 20, at the City of Novi, 45175 Ten Mile. To reserve a seat, call 833-262-2200 or email email@example.com.
Other Resources for Family Caregivers
AAA 1-B supports many resources for family caregivers. Area Agency on Aging 1-B supports adult day programs throughout our 6-county region. Visit our Adult Day page to find one, near you. We also offer Powerful Tools for Caregivers, a 6-week workshop that covers strategies for managing stress and living healthfully as a caregiver.
To find caregiver support groups, visit our caregiver support group page.
For a complete list of resources for people caring for an aging parent or other relative, visit our Caregiver Resources page.