In a survey of 750 caregivers, conducted by EMD Serono with the National Alliance for Caregiving, 72 percent of unpaid American caregivers agreed that the pandemic has caused them to feel more burned out than ever before. A full 30 percent said one of the biggest challenges they've faced during the pandemic is not being able to take a break. Burnout is especially high among Generation Z and millennial respondents (80 percent), who were also more likely to have become first-time caregivers during the worldwide health crisis.
But every caregiver knows that the reality of carving out time for yourself is far more complicated. Creating that time to rest and recharge, even for 15 minutes, requires forethought, planning and effort. And if your loved one suffers from Alzheimer's disease or another type of dementia, that time can be even more fleeting when the person's judgment and safety are a concern.
Feeling the strain
Joanne Fontaine, RN, a geriatric care manager at Newbury Court in Concord, Massachusetts and the founder of Pro-Active Eldercare, is seeing the strains firsthand. She works directly with dementia patients and their caregivers living in the independent side of the community to offer advice, moderate support groups and help manage care as changes occur.
"After the months of lockdown that started last March, many activities are still restricted, even with vaccinations,” she says. “Most caregivers have already lived a 36-hour day and had to double as full-time activity directors. Now, with the COVID lifestyle, they are living a 72-hour day. It's exhausting.”
Fontaine points out that caregiving assistance allows these selfless individuals to step back into the role of family member or spouse, an identity that often gets lost in the caregiving role.
I can fully relate to that. While nursing my husband back to health after his traumatic brain injury, I wondered how intimacy would return if I were forever handling his basic needs and feeling frightened about the future. I had the luxury of Bob's returning to good health, but during that time, my mother's relationship with my father began to resemble that of parent and child as he slid further into dementia.
As a case manager, Fontaine is concerned about the general cognitive decline she has witnessed in many dementia patients — and even in some caregivers — due to the long lack of socialization and activity this past year. She cautions that it's more important than ever to encourage caregivers to accept help in whatever form and to look for ways to engage their loved ones in activities that will allow them to step away, even for a short while.
"Especially for those at the beginning of the memory-loss spectrum,” Fontaine explains, “as the disease progresses, life gets harder. It's important to establish those relationships and routines now, while your loved one can accept other people in their daily life."
Carve out respite time
Finding small moments of respite during quarantine means keeping a running list of activities that may allow you to do simple things like take a bath, phone a friend, complete an activity uninterrupted or have a few minutes of precious silence to close your eyes.
The first step, according to Fontaine, is to put some thought into what your loved one enjoyed before dementia. “Make sure that when you give a task to a loved one, it's couched in language that makes the person feel as if they are contributing and the activity is useful,” she instructs. “We all want to feel included and valued. Self-esteem is such an integral part of any human being, and Alzheimer's doesn't change that fact. Keep in mind that when it comes to keeping your loved one busy and engaged, it's the process, not the end product.”
I asked people on the AARP Caregiving Facebook page to share ideas on how they engage their loved ones. I received some wonderful answers, and all of the suggestions incorporated the essential component of dignity.
One caregiver said she keeps a basket of socks and asks, “Grandma I'm so tired, can you help me sort these?” The task keeps her grandmother occupied and gives her purpose. “If I had said ‘Sort these,’ it would have an entirely different association,” she wrote. “But when it's framed as needing help, it changes the way she sees herself.”
Another caregiver said that when her mother was no longer able to tend to her beloved garden, she came up with other ideas. She ordered seed and flower catalogs, found YouTube videos of gardens and bought fake flowers that her mother could continually arrange and rearrange in vases.
One caregiver husband said he asks his wife to set the table every night. “She doesn't always get it quite right,” he conceded, “but she loves being able to feel like she is helping with the meal.”
Photo albums and digital frames with rotating pictures can be absorbing, along with jogging warm memories. During the pandemic my sisters and I bought our mother a digital device through which she could accept our video call with the touch of a button. The screen also doubled as a rotating photo frame, and we would email her new images to appear each day.
When dementia began to prevent Fontaine's mother from tackling the crocheting projects that she loved, she unrolled yarn skeins and told her that the church needed balls of yarn for a bazaar. Once her mother finished, Jeanine would unroll the balls and have her start all over again.
"Don't be afraid to try new things,” Fontaine suggests. She's seen caregivers find success by providing animal lovers with mechanical cats or dogs that have soft fur and move or make noises. Many dementia patients find comfort in the tactile nature of these simulated pets that come without the added responsibility.
"Look for activities that provide existence with meaning,” Fontaine advises. “Try to plan things that are oriented toward success, seem failure-free and are connected to something that has purpose for your loved one.
Fontaine keeps a running list of suggestions for caregivers of dementia and Alzheimer's patients. I have chosen just a few below.
- Create a collage from magazines.
- Twist nuts and bolts together or sort them in containers.
- Play music the patient loves.
- Do a paint-by-numbers piece or another art project (don't worry if it's done correctly).
- Fold clothes or sort socks.
- Wash, sort or polish silverware.
- Sort objects, and find tops for plastic containers.
- Look at coffee table books.
- Clip coupons.
- Color an American flag.
- Make cards with stamps, stickers and colored pencils.
- Mold dough or use modeling clay.
- Do simple jigsaw puzzles.
- Sand wood or do other easy and safe workshop projects.
- Decorate placemats.
- Pull weeds and rake leaves.
- Trace cut leaves.
- Sort coins.