Who Cares for the Caregiver During COVID-19?

Addressing the needs of those suffering from caregiver stress syndrome.

Posted Sep 22, 2020

My friend has been the caregiver for her husband, who had a stroke at the beginning of the winter. He came home from a rehabilitation unit several weeks before the lock-down imposed by her town began, and he was visited several times a week by physical, speech, and occupational therapists. Additionally, a home health aide came daily to bathe, shave, and dress him.

Then everyone disappeared when the lock-down began. Eventually she was able to find home health aides to care for her husband’s basic needs; she was tiny and because her husband was a large man, she could not manage on her own. But the professionals who had come to the house, and her family and friends, long longer appeared. They did not want to risk exposing her and her husband to COVID-19.

The depression, anger, fatigue, weight loss and insomnia, already evident soon after she became her husband’s caretaker, gradually intensified with her increasing isolation. Sometimes she could laugh at the deterioration of her mental and physical state. During one phone call, she told me she had dropped a mug full of coffee on a stack of freshly folded laundry. Several hours later she nearly set her microwave on fire when she failed to put any water in the bottom of a plastic container holding carrots, and then set the time for one hour rather than 10 minutes. Finally, she locked herself out of the house when taking out the garbage but remembered that there was a spare key in her car. That was a good day. One bad day she mumbled something about wishing she could get the coronavirus because it would be a socially acceptable way of dying. “No one will blame me for leaving my husband if I get sick and die,” she told me. She did not seem to be joking.

Her despair, exhaustion, helplessness, and loneliness are not unusual among those who are the caretakers for a child, spouse, elderly parent or other relatives. The many articles written for caretakers list these symptoms (and more) as typical for persons who bear the responsibility for the health of others. There is a name for it: caregiver stress syndrome.

According to this article, between 40-70% of caregivers suffer from depression and anxiety; anger and irritability are also common. The caregivers’ role is also associated with risk of developing high blood pressure and other cardiovascular problems, including weight gain and diabetes. Almost three-quarters of caregivers, according to this article, state that they do not seek out medical care for themselves as often as they should. Although there is also a need for psychological help with the emotional burdens faced by the caregivers, they do not look for this support, either.

However, according to a study looking at the relationships within a family in which one member has a disability, it is critically important for the caregiver and the rest of the family to obtain therapeutic help when there is emotional distress. The author states that the absence of resolution of familial tensions and conflicts caused by the disability of one member of the family may diminish the quality of the care itself due to depression, and could cause family relationships to “fall apart.”

Caregivers may endure a greater degree of social isolation than the general population because they fear exposure to the virus if they leave their homes. The risks that others are willing to take by getting a haircut, shopping, dining outside, taking public transportation or even visiting friends and family are too great for the caretaker to accept. “What if?” is the question on the caretaker’s mind when he or she contemplates leaving the home. My friend recently allowed herself very occasional company with social distancing outside at such a distance that her guest and she almost had to communicate by cell phone.

The needs of the caregiver for services and support during the pandemic have not gone unnoticed. At the beginning of May, an article appeared on the U.S. Department of Health and Human Services website describing various foundations and agencies providing services for those in need of care and for their caregivers. The article outlines strategies for obtaining the necessary support services during the pandemic, and provides links to internet sites where such information can be found such as The John A Hartford Foundation, the Milban Memorial Fund, and others that have assisted states in helping family caregivers during the COVID-19 crisis. The Administration for Community Living, has its own website with information about services in one’s own community.

Caregivers may not, indeed probably don’t, seek help until they are feel they can no longer cope. Sometimes it is not even the care that must be given which causes the desperation. My friend said she could cope with her husband’s illness and dealing with the finances, taxes and isolation, until she discovered something seriously wrong with their air conditioning system. This was in the middle of a prolonged heatwave. “I lost it,” she told me. “No one could or would come out and fix it because of COVID. After spending a day crying, I finally asked my husband’s neurologist to intervene. He called up the company and said it was imperative for my husband’s health that they fix it immediately.“

And sometimes it takes only a phone call from someone who understands to lessen the depression, to elevate the mood through understanding, and perhaps laughter. My friend told me that she worried about how angry she was at her husband, even though he didn’t cause the stroke or the pandemic. “I was so ashamed of my feelings. It made me even more depressed, but I didn’t know what to do. But another friend whose wife has a debilitating neurological disease told me it is very common to be angry. ‘I was once asked if I ever considered divorcing her,’ he told me. ‘I said never … but I have considered homicide.'"

My friend laughed when she told me this, and said that laugher and compassion from others have sustained her through this incredibly difficult time.