Why We Must Solve a Family Caregiver's Greatest Challenge: Loneliness


Why We Must Solve a Family Caregiver's Greatest Challenge: Loneliness

(This post is part of the #Blog4Care blog carnival hosted by Caring Across Generations. By sharing our caregiving stories, we hope we can create solutions to the care crisis affecting millions of Americans. )

water-245376_640This week, I asked family caregivers to describe caregiving loneliness in six words. Their answers:

We're always together...yet always apart. ~ A fan from our Facebook fan page

I feel very isolated. ~ A fan from our Facebook fan page

All encompassing void, surrounded by nothing. ~ Pegi (@worriedwife), who cares for her husband

Tear splashing heaviness pushing away breath. ~ @thedogmama, who cares for her mom

Research released earlier this week found that "siblings are not equally involved in caregiving when their aging parents start needing care. In 75 percent of all cases, only one adult child will become a caregiver." A few weeks ago, I shared that half of the respondents in our 2013 Annual Family Caregiver survey do not have help from other family members. (Read Sometimes, They Just Don't Help.)

And, a few years ago, at a family caregiver's request, I added this write-in question in our Annual Family Caregiver Survey: How do you manage your feelings of being isolated and lonely?

Answers from our 2013 survey include:

"This is a tough one... I think what I try to do is just stay positive and try to focus on someone else who made need help/support and take the focus off of myself."

"I don't. It is very hard."

"I escape as much as I can, which isn't much."

"I pray, call or text my sister (other caregiver), and do small things that give me pleasure. A cup of coffee as the sun rises, go out and wish on a star, follow the stages of the moon, read, and walk every day."

"There's no time to manage it. I bottle a lot of stuff up. Sometimes I can talk to a friend, but she's in the same situation I am, so I don't want to talk too much about my stuff when she has her own caregiving struggle."

Loneliness leads to believing you are the only one, which can lure you into thinking that you don't have solutions or resources or options. Loneliness tempts you into thoughts like, "No one understands. No one supports me. No one can help me."

And, so the lonely become lonelier. The isolation grows, which can give rise to bitterness and resentment.

Loneliness, though, not only affects the individual. It spreads to impact a community. A community may be full of family caregivers (others who care for a family member or friend) and yet no one in the community knows this. The loneliness means others can't connect and share and support. Because of the loneliness, an individual remains alone and a community remains ignorant of the needs of its community.

I remember reading a comment from a former family caregiver who shared about his experience caring for his mother-in-law and managing his career. Out of respect for his mother-in-law, a very private person, he kept his caregiving role a secret. He worried how she would feel if he spoke about the impact of her care on his day so he remained silent. And, yet, if he could have found a way to talk about his stress, he may have found a way to receive support.

I think many corporations believe caregiving is a situation other corporations face--"it's not a problem here"--simply because their employees don't talk about it. Employees worry that a caregiving role could mean they lose out on a promotion or, worse, lose their job.

Because research shows that the number of family caregivers continues to grow, more and more business enter the caregiving market with products and services. As we create services and technology to help family caregivers, I hope we will ask ourselves, "Does this connect or disconnect a family caregiver?"

And, as we work to help family caregivers, I also hope we will remember that caregiving is an emotional experience. Consider the top answer, year after year, to this question, "What is the most difficult part of caregiving?" in our Annual Family Caregiver Survey: Managing my emotions (guilt, anger, grief).

The emotions of the experience will polarize, which can leave a family caregiver without help. It's not that other family members don't know how to organize meds or give a ride or cook a meal or throw a load of laundry into the washer. It's that other family members and friends don't know how to deal with the emotions of the experience, which is why they don't help. (Read "Your Greatest Skill: You Know How.") I hope we can evolve from the same tools I see created over and over which focus on organizing care to helping others understand how to cope. Others don't help because they don't know how to cope with the sadness, the grief, the declines. And, that's the most insidious kind of loneliness.

When we help family caregivers feel accepted, feel a part of a community, feel that possibilities exist, we solve the problem of loneliness. We help family caregivers live a full life rather than put their lives on hold during a caregiving experience. And, when that happens, we move the caregiving experience into the mainstream, into an understood and supported life experience. It's not an experience that happens to them. It's an experience that happens to us.

"Individually, we are one drop. Together, we are an ocean." ~ Ryunosuke Satoro


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As Pegi says, thank goodness the loneliness is not always there. When I began my caregiving journey long distance my job and family kept the loneliness at bay. Even the fact that it was long distance and not full time helped. When Mom moved in with us it became more difficult and the loneliness of caregiving became more apparent. I am very fortunate because I have two former co-workers who were also caregivers. Two of us were caring for our widowed mothers in our homes and the other helped her father care for her paraplegic mother. We met for lunch when we could and were so lucky to have someone to talk to who knew exactly what we were going through. It helped with the loneliness, but there are always the days when you just can't help it, you feel like no one is helping, no one understands and no one knows what you are going through. You are just plain lonely.