Not Just Visitors: Family Caregivers Need a Voice in Eldercare Policies Now

daughter visiting father in nursing home

When my father moved into the memory care unit of the Charlwell House Health & Rehabilitation Center in Norwood, Mass. several years ago, I visited him every day. He had advanced dementia and not only did I want to soak up every moment I could with him while he was still alive, he needed me. Because I knew the people and stories he referenced when he frequently mixed up past and present, I could connect with him in a way others could not. Even though he didn’t always know I was his daughter, he knew that he trusted me and so he would listen when I asked him to eat, or take his medications or go to bed. I was more than a visitor, I was his advocate, his ally, and perhaps his lifeline. Along with the nurses and aides on staff, I was a member of his care team.

Last month, when news broke that 15 residents had died from the coronavirus outbreak at Charwell House, my heart hurt for the patients, their families, and the staff I remember to be compassionate and competent. While I find it tragic that families cannot be together at end of life, and that care facilities have had to restrict visitors, I understand the need to take drastic measures to stem the spread of the coronavirus. I understand that we all must make sacrifices in this extraordinary moment. And as someone whose mother spent the last three months of her life in a hospice home, whose husband spent the last weeks of his life on an oncology hospital floor, and who was able to be with both of them when they died, as I was with my father at Charlwell House when he passed, I truly understand the sacrifices we are requiring families to make right now.

Every morning I start my day reading posts in the Working Daughter private Facebook group for people who are caring for aging parents. For the past two months I have borne witness to the worry, fear, and sometimes anger thousands of family caregivers are experiencing since the COVID-19 outbreak. Some are holding their breath, waiting for the day they hear there has been a positive case in their parent’s senior living facility. Others are wondering why that information isn’t readily available. Some wonder whether they should move their parent in with them, and if they do, how can they care for them and protect them from exposure? Some lament the fact they’ve noticed significant cognitive decline as their parent sits in isolation. Others mourn the missed time with family members who are advanced in age and compromised in health. And many are questioning visitation policies, especially where dementia is involved.

My message to these caregivers has been that when we get to the other side of the crisis, we will work together to affect positive change. Now is not the time, I’ve said, but we will make sure this moment matters. We already knew we needed better pay and workplace protections for the paid caregivers who care for our parents. We quickly learned that senior living facilities need to put communication policies and protocols in place. But family caregivers are pushing back. “How long do we wait?” they ask. “How long will this situation last and how bad will it get – how much will my parent suffer?” They are right to ask these questions now. Are we making the right tradeoffs between safety and loneliness? Do the visitation policies make sense – especially when it comes to people with dementia? “We’re not just visitors,” they remind me. “We’re caregivers” Yes, just as I was for my father.

The time is now to have these conversations and family caregivers must have a seat at the (virtual) table as they take place. We are not looking to flout safety or hinder progress in the fight against COVID-19; we are vested in protecting the people we love. What we are simply asking for is representation. As government officials, public health experts, medical professionals, and care facility administrators convene to discuss how to care and protect the elderly, they must include family caregivers in the process. After all, those same groups of people and policy makers rely on family members to provide an estimated $470 billion in unpaid care annually, according to the AARP Public Policy Institute. Surely we can be relied upon to help address what’s best for our family members now.

Want to add your voice to the growing ranks of family caregivers who want to change the world for our aging population and the people who care for them? Click HERE.

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