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Eleanor Wakin: How caregiving brings exhaustion — and rewards

I look around the table at the weekly Dementia Caregivers’ Support Workshop I direct.

The participants all look exhausted. They are happy to be together again after another week of “laboring in the trenches.” And not all, but most, of the participants are women, many in their 50s, 60s and 70s.

I identify with these caregivers. For eleven years, my first job after retiring was as a dementia caregiver for my husband. I had planned to spend more time printmaking and painting but my husband’s illness changed all that.

I ask for a show of hands: “Who, here, is sleep deprived?” Every hand goes up.

We talk about how vitally important it is to get enough sleep, in order to do the caregiving job. This work is not only exhausting but also, by turns, satisfying, depressing, rewarding, frightening, frustrating, enriching and never-ending.

“If you’re able to get any help at home” I advise, “get someone for the night shift, first, and try to get a few more hours of sleep, yourself.” I remember being so exhausted as a caregiver that I’d fall asleep whenever I sat down and once, actually dozed in the middle of a sentence, while talking to my husband’s physical therapist!

We spend a session devising satisfying activities for our care recipients, based on what they used to enjoy. We remind ourselves how important it is to do some pleasurable things for ourselves, even if that means bringing our care recipient (and their diaper bag and change of clothes) along to a concert or movie or shopping excursion. We talk about the advantages of getting good “transport chairs” (lightweight portable wheelchairs) to enable our care recipients to go out with us.

Isolation is a big issue for caregivers — hours spent jockeying between food prep; toileting; keeping the care recipient (and the kitchen floor) clean; dressing; giving meds; feeding; devising and directing activities — always working one-on-one with the care recipient and never socializing with anyone else. We talk about how to access local resources for adult day care and overnight respite, which have recently become more plentiful in our community.

Everyone wants to know the best ways to manage doctor visits. When a local geriatrician comes to speak, she emphasizes the importance of giving the doctor an accurate history and raising all the questions on the list she hopes we’ve been keeping since the last visit. She talks about “true medical emergencies” (such as a rash that develops after taking a new medication), when we should get our patients to the Emergency Room, pronto. Someone raises the question of “caregiver burden” — and she talks about keeping our own health care providers apprised of the stresses we’re under and symptoms we’re experiencing. Caregivers notoriously often die before the people we’re caring for.

When a clinical social worker visits, he assures us it’s absolutely normal for even the most loving, devoted caregiver to sometimes have embarrassing feelings of rage, resentment, despair and guilt.

A grief counselor sits with us and affirms it’s completely appropriate to grieve the loss of our care recipients, even while they’re still alive, because, in a very real sense, we have already lost the people we knew before they got sick. “There’s no right or wrong way to grieve,” she counsels, “and it takes as long as it takes.”

Most weeks, we have a guest speaker. The range of topics is wide because caregiving is such a complicated business and we’ve never studied such things as what legal documents we need to assemble, how to prevent our care recipients from falling, or how to make excruciating ethical or end-of-life decisions.

All family dynamics are complex and often a caregiver has to defend her actions and decisions to family members who have no idea of the real day-to-day situations she’s facing. It’s often the relative who’s furthest from the scene who’s the most critical of the choices the caregiver is making. Our clinical social worker is coming back to give his guidance on how best to deal with families, especially the members who aren’t sharing in the caregiving work. And we’re all looking forward to the therapy dog visit when her owner will talk about the healing bond between animals and people.

Caregivers are often invisible in the world outside their patients’ rooms. But most people know a friend or neighbor or relative who is doing or has done this work, with or without pay, because chronic diseases are so widespread. Some of us just take on helping an ailing spouse or parent or neighbor, even as unprepared as most of us are for the job. And much as it is exhausting, frustrating and confusing, caring for another person in their time of urgent need is enormously rewarding. Most caregivers say the work gives new and deeper meaning to their own lives.

As I look around the table at the diverse group who are selflessly and continuously caring for their patients and loved ones, I recognize the common trait they share — loving devotion. When we exhaust ourselves to improve another person’s quality of life, we are manifesting the highest form of humanity. Caregiving is love made concrete.

Nearly two years ago my wife of 59 years died after about 12 years of dementia. For all but two months of that time, she was at home with me and one other caregiver. During her dementia she had some amazing discoveries about her childhood, about her life, and about the next life. Before she died, she had found more serenity than I had ever seen in her. I have realized that by being present to her in her dementia I also gained new awareness of myself and serenity. Richard Trousdell told me recently that you had worked with people who had similar experiences. I'd like to connect with you as I explore ways to communicte this side of dementia, which I have seldom seem expressed.

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