Combating Caregiver Isolation and Loneliness

Caring for an aging or chronically ill loved one can be lonely. This can be especially true if you’re caring for someone with dementia or Alzheimer’s disease who may not be able to communicate the way they once did. Caregivers can find themselves feeling overwhelmed, tired, stressed and—often—like they’re on their own.

Why finding connection is critical

People are social creatures. It’s how we’re wired. We crave connection and the chance to share, laugh and be understood by other people. This is especially important when we’re doing something stressful, like caregiving. That support can help keep us afloat and carry us through. Not only is it critical for our mental health, but there is also a growing body of evidence that social connections are critical for our physical health as well. Social isolation and loneliness have been linked to depression, high blood pressure, immune problems and even heart disease.

Why caregivers experience isolation

You spend big chunks of your time/energy caring for your loved one
Caregiving can be draining—both physically and emotionally. When you’ve spent all day running errands, lifting, transferring, making meals, administering medical care or trying to wrap your brain around the latest caregiving challenge, it can be hard to find the energy to do those things you used to do. Finding the time to get out to your book club, your regular lunch date, or even to your house of worship can be difficult. You end up canceling—once, twice and then regularly. Your friends understand, and they empathize, but those critical social ties can begin to fray.

Friends don’t reach out as much
When you first start caregiving, your friends and family are often right there. They ask what they can do, they drop by, they drop off casseroles and they are happy to lend a listening ear. But a short-term caregiving crisis can often turn into a long-term caregiving marathon. (The average caregiving experience lasts four years, with 24% of caregivers providing care for more than five years and 15% caregiving for 10 years or more.) As time goes by, those offers of help and support start to dwindle.

You can’t leave your loved one alone, and it can be hard to take them with you
Finding care for your loved one can be another barrier to connecting with others. Even if you have a large family, you might find yourself as the primary or sole caregiver without a lot of options when you need another family member to step in. Another problem may be your loved one’s reaction when you head for the door. A loved one who is used to being with you day in and day out may object to being left in the care of someone else, leaving you with a feeling of guilt and uneasiness that makes it hard to truly socialize.

Taking your family member with you might be just as complicated. Getting someone with cognitive or physical limitations dressed and ready for an outing can take a lot of time and energy. You may end up feeling like it just isn’t worth the effort.

How you can connect

Find a support group near you
Other caregivers can be an exceptional source of support and understanding. Many disease associations, hospital groups, senior centers or faith communities host them. Some groups even offer respite care that will allow you to bring your loved one along and have them cared for while you attend. To find a support group near you: Ask your loved one’s doctor, take a look around the web, call your local Alzheimer’s Association chapter or your local Area Agency on Aging. You may even be able to find specialized programs—just for caregivers—that offer art experiences or mindfulness practices.

Find support on the phone and online
If leaving the house is a problem, you may be able to connect with other caregivers on the phone or online. The Alzheimer’s Association hosts ALZConnected, a free, online community with a forum for caregivers. If you’re caring for a spouse, the Well Spouse Association is another option. It has telephone support groups that meet once a month. DOROT, a nonprofit based in New York, has online and telephone caregiver support groups that allow participation from around the country.

Find outside help so you can invest in a little “you time”
Reach out to nonprofit organizations or companies that provide senior care. Adult Day programs offer regular respite that will allow you to have some down time and find ways to reconnect. These programs can be a great way for your loved one to socialize too. Most adult day programs offer art, music and other activities that will encourage your loved one to engage and interact. Some nonprofit organizations offer low-cost or no-cost respite care. Check with your faith community or local Area Agency on Aging for some options. Home care agencies are also a good source for regular respite care. Do your homework and find one you like and that can work well with your loved one. You’ll have to pay out-of-pocket, but being able to recharge and reconnect is probably worth it.

Tell your friends you’re struggling and ask them to reach out more often
Make sure they know that you still want to be included. Let them know that if you don’t show at get-togethers or you’re late returning calls, it’s not because you don’t want to be there or you don’t want to talk. Let them know what you’re going through and how important those connections are to you. Ask them to keep reaching out and to keep inviting you.

Move past the guilt
Self-care is not selfishness. We cannot really be our best as caregivers if we aren’t taking adequate care of ourselves. If feelings of guilt are contributing to your isolation, reach out for help so you can work through those feelings. Many Area Agencies on Aging in Michigan offer a class called Powerful Tools for Caregivers. These classes are often free and focus on coping with stress, communicating and dealing with the complex emotions that sometimes accompany caregiving. Classes meet for 6 weeks, for 90 minutes each week. They are often taught in a small group setting, so you get to know other caregivers. Contact your local Area Agency on Aging to see if a class is being offered near you. Therapy is another option and an be incredibly valuable. If you’re having trouble leaving the house, there are mental health providers that will visit the home or offer services over the phone.

This blog post is courtesy of the Area Agency on Aging 1-B, a nonprofit responsible for serving more than 700,000 people 60 and older in Livingston, Macomb, Monroe, Oakland, St. Clair and Washtenaw counties. By providing community-based services from meals to in-home care, the Area Agency on Aging 1-B enables older adults and adults with disabilities to maintain their health and independence in their homes. More information is available by calling the AAA 1-B Information and Assistance Telephone line at (800) 852-7795 or visiting www.aaa1b.org. We’ll be partnering with AAA 1-B on our Midlife Map series. Their experts will provide monthly tips geared toward the “sandwich generation” – people in midlife facing the complicated juggling act of caring for children and older parents at the same time.

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Photo credit: MangoStar_Studio

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