In my role as a family caregiver specialist for Spectrum Generations, central Maine’s Area Agency on Aging, I facilitate support groups for caregivers.

While our support groups are for family caregivers in general, the majority of those who attend are people who provide care to someone with Alzheimer’s or dementia. Support groups provide a safe and comfortable environment for people to share their experiences, concerns and even joys. To see support group members develop friendships, support each other in times of frustration and grief, and share a laugh from time to time is truly the best part of my job.

At a group recently, a woman said she doesn’t find it “satisfying” when she visits her husband who has dementia and is in a nursing home. It seemed as though the other caregivers in the group could relate.

The word “satisfying” really struck me. I could imagine her at home, alone. I thought about her feeling lonely, depressed, maybe bored, and probably guilty, as many caregivers do. Perhaps she thinks to herself, “Maybe if I go visit my husband, I won’t miss him so much, and I’ll feel better. It will be nice to see him.”

Unfortunately, I assume that when she visits him, the conversation is likely strained and one-sided. He no longer has knowledge about current events, politics, sports, or any of the other things he used to like to talk about. He can’t remember their private jokes. He can’t remember the names of their grandchildren. He’s easily distracted. He’s still her husband, but he’s not really the same.

When it’s time for her to leave; she leaves alone. She still misses him. She still feels depressed — maybe even more so after seeing him this way, in this place. She still feels guilty that she can’t care for him in their home. She’s not satisfied.

Truthfully, I think what this woman is feeling is grief. For so many caregivers, the sense of loss experienced with Alzheimer’s and dementia can be confusing and overwhelming. It’s hard to rationalize the feeling of grief or loss when the person is still living. This is referred to as an ambiguous loss. It’s ambiguous because there is no closure, there is no funeral, and there are no answers.

In the example of the woman from the support group, one can imagine that she no longer has the same relationship with her husband that she once had. While she still loves him, and he probably feels a sense of connection with her, their relationship is no longer the intimate one of a husband and wife. He is no longer a companion for her. This is a loss, regardless of the fact that he is still physically here. Her visits with him are unsatisfying because they don’t help her heal or move forward; they don’t make her feel better.

Sunday is World Alzheimer’s Day, but caring for someone with Alzheimer’s and dementia is a 24/7, 365 days-per-year job.

If you know someone like her, be a good friend, listen to her worries and give her a shoulder to lean on. If you are someone like her, get support from friends, family or support groups. This can be the most positive way of dealing with ambiguous loss. Joining a support group offers caregivers the opportunity to get information from people who have experienced the same things. It also can be helpful to share lessons learned and funny things that happen along the way.

Finally, it is always important for caregivers to remember to take care of themselves and maintain hobbies and interests they had before taking on the role of caregiver. Diet, exercise, medication management and staying healthy are just as important for the caregiver as they are for the care recipient.

For more information about Spectrum Generations Family Caregiver Support and Respite Program, support groups and many other programs and resources for older and disabled adults, contact Spectrum Generations at 1-800-639-1553 or online at www.spectrumgenerations.org.

Elizabeth Crawford of Gardiner is a family caregiver specialist at Spectrum Generations, central Maine’s Area Agency on Aging, and Aging and Disability Resource Center.

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