Full time unpaid caregivers for a loved one with dementia have it hard enough during normal times but during this COVID-19 pandemic it goes to a whole other level. It is difficult to go anywhere so the family caregiver spends a lot more time at home with the care receiver.
One real example—before the pandemic, a woman who had been caring for her mother for several years looked forward to a precious break a couple of times a week while Mom attended Adult Day Health (ADH). The pandemic deprived her of that relief. Ironically, Mom—who initially was reluctant to attend—now misses it. She keeps asking when she can go back to her “club” to see her friends. But ADH centers were forced to close their doors in March 2020, due to COVID-19. Thanks to the Delta variant, the long-anticipated re-opening of these centers continues to be just around the corner, but not quite yet.
When daughter and mother do go out, there are new issues to contend with. No matter how many times she reminds Mom to keep her mask on when they go to the clinic or a store, Mom tears it off. It doesn’t help to explain to her that we’re in the middle of a global pandemic. Each time Mom hears this bad news, it’s as if it’s the first time she heard about it. She gets upset and may start to cry or yell in protest. Sometimes she doesn’t comprehend at all.
COVID-19 has exacerbated caregiver burden for more than a year and a half. Another woman who used to run errands (such as shopping) while her mother was at day care must bring Mom along with her now. That daughter hasn’t had a break since February 2020. The stress is cumulative. She has considered in-home help but is an older person herself and her husband has a medical condition that puts him at high risk, so she has not felt safe to bring anyone into their home to help care for her 90-year-old mother. Maybe after they all get their booster shots, she muses.
Though isolated, caregivers are not alone. It is estimated that there are about 850,000 people in in Washington state who care—without compensation—for loved ones with dementia and/or other medical issues. Every situation has its own set of variables and challenges. Many family caregivers are looking after spouses living with dementia.
Some caregivers have mobility issues themselves and require assistive devices. A man who used a walker faced the challenge of caring for his physically fit wife who was living with Alzheimer’s. Frequently, she walked away at a rapid pace.
People with dementia do not perceive themselves as wandering. In their minds, there is somewhere important to where they must go. For example, an elderly gentleman, 20 years retired, who had worked early morning shifts for decades would get up at 4 a.m., believing he needed to catch a bus to work. One time he got out and somehow caught a bus. He was found wandering around downtown Seattle, knowing neither where he was nor how to get home. Eventually the police picked him up and brought him home safely. His wife had special locks and door alarms installed to prevent another such dangerous and upsetting incident.
A lot of family caregivers who had been using in-home services such as Respite or Housework and Errands (H&E) put these services on “COVID hold” in the spring of 2020, anticipating that the pandemic would be short-lived. As the months wore on, many found themselves increasingly burned out. Caregiver support specialists at Aging and Disability Services were able to facilitate access to COVID-19 vaccinations for a lot of caregivers and care receivers this winter and spring, with priority scheduling.
Once fully vaccinated, many caregivers began to feel safe and gradually returned to in-home services to help them manage the care of their loved ones. In-home care workers wear Personal Protective Equipment (e.g., face masks, gloves) to keep their clients and themselves safe. In general, caregivers receiving in-home help are relieved and grateful for this support.
Unfortunately, there is a critical shortage of available home care workers across the board for all programs, including private-pay agencies. The demographics for potential workers have not been going in a good direction for several years due to various factors, including aging baby boomers who need care themselves, so they are no longer able to work as home care aides. The pandemic has further reduced the number of available home care workers due to risk of exposure to COVID, loss of childcare options, impact on U.S. immigration, and more.
Isolation and loneliness during the pandemic can be intensified by being home alone with a spouse who no longer recognizes the caregiving spouse. A man with dementia might refer to his wife as “this nice lady who takes care of me.” This is one of the most heartbreaking aspects of this disease. A caregiving wife might try to give her husband a kiss only to have him tell her that his wife wouldn’t like that and that he would never cheat on his wife. It is futile to remind him that they just celebrated their 60th wedding anniversary. In his mind his wife is much younger than this 85-year-old woman who cooks his food and helps him get to the bathroom.
Some caregivers have the support of family and friends, while others are on their own, or their adult children live in other states so there is long distance support, but visits have been reduced due to the pandemic.
The good news is that there are a lot of services and supports available for family caregivers. Despite the bleak picture painted above, many caregivers do receive in-home respite, housework and errands services, caregiver counseling (currently by phone due to the pandemic), STAR-C, and more. One silver lining coming out of this pandemic is that online support groups and other remote services have blossomed. Some ADH centers, while not open yet for onsite services, provide remote exercise classes on Zoom, support calls, and more.
The Washington State Dementia Action Collaborative has published an extensive list of dementia caregiver supports during COVID-19, which you can view here.
Contributor Carole Bourree is a Family Caregiver Specialist with Aging & Disability Services’ Family Caregiver Support Program. To access local caregiver support services, call Community Living Connections at (toll-free) 844-348-5464. All calls consultations are confidential and free of charge.