My mom is pretty amazing. Her breast cancer diagnosis didn’t stop her from doing anything. Her job. Taking care of my younger brother. Taking care of my grandfather. She had been taking one of those new gene therapies and she was really doing great – and then there was the pandemic. I freaked out and called her. I told her she had to stop visiting grandpa, stop going grocery shopping. Stop everything! She was immune compromised and at risk for getting the coronavirus.
At first, she listened. Sort of. She still went to the grocery store, wearing a mask, and when she came home she wiped everything off. She had a job where she could work from home, so that helped. And we had enough money to hire a helper for grandpa who came in two days a week.
But the pandemic went on and on. We had to cancel the helper for grandpa and mom had to go and help him with his meds and his grocery shopping and laundry. She was getting stressed out and run down so she started to order from restaurants, and then go to restaurants, and then she started seeing her friends – and she wouldn’t listen to me! She was taking so many risks. What can I do to get her to make better choices? Do I have to move back home?
How much risk is too much? How can a family caregiver weigh the necessity of caring for a loved one, caring for themselves, and still take all reasonable precautions to avoid COVID? Everyone has their own level of risk tolerance to consider – but a family caregiver has to develop a risk profile for the entire family.
Being a caregiver frequently leads to a sense of isolation and depression. How can caregivers make balanced choices to care for themselves and their care recipient? Should safeguarding against the coronavirus be the primary concern for you and your loved one – even if separation causes loss of emotional and mental well-being?
Caregiving affects the entire family. Each family should find a time to talk about their family risk profile. Caregiving can fundamentally change the family dynamic in inescapable ways. With so much of your attention focused on caring for your loved one’s condition, your responsibilities as a caregiver can change your relationship with your spouse, your other children, or other family members. When you add in the pressures of caring during the pandemic, these dynamics are complicated by each family member’s own risk perceptions.
Let’s face it – some family members are risk averse, and some aren’t. If your sister-in-law wants to visit your father in the middle of the pandemic, and she is coming from a hot spot where there is a lot of COVID, you may think she’s crazy! But she may think it’s her last opportunity to see Dad. Talk about it. Be honest with each other. Or if you think your mother is taking unnecessary risks having coffee with her friends, tell her. And tell her why.
A family meeting – even if it’s a phone call or video conference – is a great place to start. Although family meetings can be hard, they are a good way to pull together and support you and your loved one. Don’t be afraid to ask for help with organizing the meetings.
It may be too much to hope that everyone will be happy or that all the issues will be resolved in one sitting. Remind family members you may need to find some middle ground. At the end of the meeting, set up a time and a place for the next family meeting. And maybe you can all develop a risk profile for the family that everyone is comfortable with.
 MetLife Study of Working Caregivers and Employer Health Costs; National Alliance for Caregiving and MetLife Mature Market Institute. February 2010
Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with significant health needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN reaches caregivers on multiple platforms. CAN (the National Family Caregivers Association) is a 501(c)(3) non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
John Schall has served as the Chief Executive Officer of Caregiver Action Network (CAN) for the past eight years. Recognized nationally as a thought leader on caregiving issues and trends, John effectively links private sector goals with health care public policy.
John leverages his 30+ years of expertise in a wide range of policy fields, including healthcare, labor, education, economic development, taxation, and budget policy, to develop programs and strategies to solve the nation’s looming caregiver crisis. He has established CAN as a major voice in caregiving advocacy, with activity and position statements to policymakers on numerous issues.