From The Plain Dealer —
By GRETCHEN CUDA KROEN —
CLEVELAND, Ohio — The holidays can be a stressful time of year for anyone, but for those who have taken on the role of caregiver for an aging or disabled family member, the holiday season can be especially challenging.
As extended family and friends come together, experts say there are things we all can do to help support those in caregiving roles, or to prepare a plan for the care for a loved one whose health is visibly declining.
Although many caregivers feel alone, they really have a lot of company. According to a 2020 survey conducted by The National Alliance for Caregiving and AARP, almost 53 million Americans, roughly 1-in-5 people, are providing unpaid care to a family member or a friend, a number that increased by nearly 10 million from 2015.
Nearly 80% of caregivers provide care for an adult aged 50 or older. Most often they are providing care for a parent, and approximately half of those adults have dementia or Alzheimer’s Disease.
Caring for a loved one can quickly become a full-time job, and it is physically and emotionally draining, said Dr. Ardeshir Hashmi, geriatrician at Cleveland Clinic. And at the holidays, that can lead to feelings of depression and isolation for caregivers.
“The caregiver often feels like ‘I’m the quarterback. I’m the point person. And I feel so alone doing this job,’” said Hashmi. “That’s what we hear a lot, during the holidays especially.”
In families, there’s usually a person who steps forward and adopts the role of caregiver, said Hashmi. Most often it’s a woman, and the average age is just shy of 50. Many of them find they have to quit their jobs or reduce their hours in order to meet the demands of full-time caregiving.
That’s the case for Julie Jurek, 56, from Cleveland, whose mom was diagnosed with Alzheimer’s disease seven years ago. After taking care of her mom part-time for several years, Jurek said she finally made the decision to leave her job as a hairstylist during the pandemic three years ago when her mom’s dementia progressed to the point that she needed round-the-clock supervision.
“At first I would go on my days off, and then I cut work down to three days a week, and I was doing that for quite some time, but she started falling more,” said Jurek.
Back then Jurek said she would arrive at her mother’s house in the mornings to get her mom up and dressed, then go to work, and then come back in the evenings to put her mom to bed. The routine was grueling and took a physical toll.
Eventually Jurek said her mom fell and broke her hip. “So, I said you know what? This is crazy. What am I doing to myself? And I stopped.” That was about three years ago, and she’s been taking care of her mom every day since.
Jurek was fortunate. The family had set aside some money for her mom’s care, and they were able to use some of it to pay Jurek a salary to act as her mom’s full-time caregiver. It wasn’t as much as she could make in the salon, but she said it was better than nothing.
Many families don’t have this option. AARP reports that 20% of caregivers experience serious financial strain as a result of their caregiving responsibilities.
But Jurek said the emotional and personal strain is just as hard or harder. Like so many others in her situation, she rarely gets away from her caretaking role, and has had to give up not only her work, but most of her social activities as well. She even stopped going to church on Sundays because there was no one to watch her mom while she was gone.
“I feel like I’m out of touch with everything and everyone. I go in (to work) here and there just to keep my sanity, but on those days it’s really hard to leave my mom. It’s a lot,” she said.
Self-care for the caregiver is typically not even on the radar – especially during the holidays, said Hashmi. But it should be.
The gift of a break
Hashmi said even reaching out with phone and video calls can help combat the feelings of loneliness and isolation so many caregivers experience. Handing off some of the more indirect aspects of caregiving, like finances or medical appointments, to other family members whenever possible can also ease the burden.
“This sort of divide and conquer thing is key,” said Hashmi. “It takes a little bit of organization, but it goes a long way toward helping the caregiver not feel that they are overwhelmed and drowning in all the responsibilities alone.”
But for those family members or friends who want to help support caregivers, pretty much every caregiver has the same thing on the top of their holiday wish list – and it isn’t another sweater, or pair of earrings.
“The best gift would be a break,” said Ingrid Nolan, who cares for her 18-year-old son, Seamus, who has severe autism, is non-verbal, and needs constant supervision. During the rest of the year Seamus goes to school or to day programs, but during the holidays he is off just like all the other kids, and that makes his parents his full-time caregivers.
“It would be nice to have time to spend with my husband and friends without worrying about my 18-year-old who still needs a babysitter,” Nolan said.
However, actual respite care isn’t always a practical gift for friends and family for a variety of reasons.
The gift-giver may not live nearby. And people with intellectual disabilities or dementia often do better with someone steady and familiar.
But the gift of time can come in many forms. It doesn’t always have to be “babysitting,” explained Jurek.
“It’s so hard to put that on someone else. It’s a big responsibility to say, ‘Gosh, I would love someone to come over and babysit my mom so I could have a day off.’ It just doesn’t happen,” Jurek said.
Instead, she said help with the housework or laundry, a meal she doesn’t have to cook, someone to walk the dogs or do errands on her behalf are all great ways to take some of the pressure off, she said.
“I don’t think people understand exactly what it’s like to be a caregiver and what you go through. Even the small things – the littlest things – can just set me off and ruin my day because I’m never home, and I get frustrated over the simple things that I have no control over anymore.”
And over the holidays, there are so many more “little things.” Like the food and the decorations – and any help with those little things is welcome, she said.
Jurek said her mom always loved the holidays, and that she finds it really comforting to keep the family traditions going, because even if her mom doesn’t appear to appreciate them in the same way that she used to, she thinks it still brings her a lot of joy.
In some cases, the family has made modifications. For example, this year she said she moved the Christmas tree to a spot where her mom could sit and look at it all day, she puts on Christmas music for her to listen to, and because she likes to color, she gets her holiday themed coloring books to keep her busy and has her join in the cooking.
“I try to involve her as much as possible,“ she said. But, like the new spot for the Christmas tree, she also has had to accept that some bigger traditions had to change, too.
“This was the first year that I didn’t cook Thanksgiving in like 25 years,” Jurek said. “And as sad as it was, it was just as nice to have someone else cook it.”
How to prepare for a caregiver
And what about families preparing for a time in the future when a parent or grandparent will need someone to step in and take on the role of caregiver?
Hashmi said future patients themselves can take steps early on to ensure that their children know their wishes and provide them with important documents and information about their healthcare, medications, and financial documents. Hashmi said the role of geriatricians like himself is to act as connectors between families and a team of resources to help children and their elderly parents make a plan for the long-term-care they might need.
“The geriatrician is never working alone. By design, they have always worked in teams that may include a social worker, a pharmacist, a physical therapist, and a lot of community partners focused on supporting caregivers,” said Hashmi.
“Those partners can tailor their offerings to the specific needs of individual families, which can be quite different depending on whether the patient has a disability, dementia, or is simply medically frail.”
Holiday gatherings can be a good time for younger generations to check in with older family members; see how they are managing day-to-day, observe whether they are finding certain tasks difficult, if they are showing signs of needing help, and to start discussing what that help might look like, now or in the future.
“It really does take a village,” Hashmi said.
And at the holidays, the village is often gathered together.
Gretchen Cuda Kroen covers healthcare for cleveland.com and The Plain Dealer.
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