Last count, 50,779 elders have died in assisted living and nursing homes. In total, that’s 45% of all COVID-related deaths in the US, according to the Center for Disease Control. These numbers are brutal reminders that our elders constitute some of our most vulnerable populations. But, how do we get past this? How do we create safe institutions and allow elders to have a full life? How can we give their families the connection and love they need while protecting just those elders? How, as caregivers, do we make this all work? And are there ways of providing sanctuary and support to our community of caregivers? I often wonder whether eldercare can positively grow as a result of the trauma of illness our society is facing.
A friend of mine used to tell me “you can’t change the world.” Over the past several weeks I have begun to disagree with this more and more every day. We must change at least some small part of the world we live in now. There is simply no other choice at this point. Children, elders, and families face the loss of routine and purpose in the face of this virus. Caregivers of all stripes are left to figure out what kind of care is necessary when there are no rules for what is happening now because many of the systems we have created for care simply have not worked in the face of pandemic. This failure, moreover, has had deadly results, as we have witnessed in the media. The massive losses our society faces now will change all of us forever.
To say that hands-on caregiving is relentless in “normal” situations is an understatement. Caregivers, whether caring for elders with dementia or doing comfort care for very frail, dying elders, constantly struggle. Elders with dementia often hate getting help; they can hit, kick, curse, bite, spit, ask the same question every 10 seconds, hit on you, and struggle to understand even basic requests. “Come with me” or “Sit down” can become major sources of confusion and drama. They can sometimes be oversized toddlers who use every cuss word known to mankind, stubborn adults and helpless as children. They can be angry, scared, sad and love you all at once. It is often the case that facility caregivers live in a small house with anywhere from five (like in our homes) to 15 (regulatory requirement) dementia patients, per caregiver, who need constant unrelenting help. That includes assistance with eating, all parts of going to the bathroom, getting dressed, and brushing teeth. Caregivers weather many sleepless nights and often get bitten or spat on for simply trying to help. The idea of a pleasantly confused, passive little old person who silently does what they are asked is rarely a reality. Elders are fighting a disease that will take their lives, and they often see no difference between the caregiver who is trying to help them and the disease they hate. This is the reality of dementia without lockdowns, constant disinfecting, and social distancing.
Comfort care (end of life care) is equally as relentless. The numbers and hours are the same, but the care includes watching someone you have grown to love deeply, die in small pieces every hour of every day. Suddenly, there’s a slow realization that every bone in their spine is evident after having known them for years, even a lifetime. Turning his or her body every hour becomes routine. Bathing and applying lotion are vain attempts to keep skin that is as frail as wet tissue paper from falling to pieces. Those who are being cared for often witness the work of their caretakers— beautiful, comforting, and scary as hell. No food or drink tastes good. No number of cushions, pillows or blankets make resting totally comfortable. Many people face breathing issues and pain and many others simply refuse to take medication or use oxygen. Morgan, my brother, did both in ways that were stubborn, sneaky, and sometimes funny. Caregivers can find themselves drowning in loss on a quiet day. Caregivers can also find hope and joy in the face of all the exhaustion, grief and fear.
In more than 20 years as part of Vista and as a caregiver for my brother Morgan, I have done both kinds of care. So have the caregivers I work with at Vista. All of us have made daily choices about care and about love in the deepest, rawest way possible. Daily, I watch this amazing group of women put aside frustration and fatigue and find the other side of care. They find the steps to a dance to shift an elder from anger to laughter. They find a deep well of tenderness in loss. A touch when someone is in pain and afraid. A song sung softly as an elder drift in and out of our world. A way to connect an elder to life through anything from sweeping, sharing tastes of fresh made tortillas, to teaching an elder how to ask for café con leche dulce. Whatever the case may be, they make a celebration out of daily life.
COVID pushes these choices into another place. How do you explain to a 96-year-old woman on her birthday that you have to wear a mask when she asks to see your pretty face? How do you make time to disinfect every hour when an elder wants cookies or just wants to sit and hold your hand? How do you have a son wear gloves to hold his mother’s hand as she dies? Is there any way to help a husband get through not being able to even touch the hand of the woman he has loved for more than 60 years? I cradled Morgan in my arms as he died in December. I felt him breathe, I touched his hair. It is almost impossible to wrap myself around what both our families and our caregivers are facing in the middle of this virus.
Yet, our caregivers wrap themselves around these questions every minute of every day. They choose to care. They work harder and longer. They bear the confusion of systems that are fighting to survive. They listen to unhappy people. They try to bring in laughter and hope each day. They also get tired, feel the same sense of fear that everyone else is feeling. One thing that this virus has taught us is the heroism of just showing up. There is power in being there. One of our caregivers is in treatment for cancer. She is at risk. She is a mother to an amazing, smart daughter. She is a very happy wife. That caregiver, Claudia, has an amazing laugh and is tough as steel. She also deeply loves what she does and the elders she cares for. Every day she puts on her gloves, mask, and her amazing smile and comes to work. She talks about her decision to keep working as lifegiving. Her bravery, kindness and laughter give us all strength. She is a warrior and she is changing this world.
While elder care is already wrought with challenges, COVID has brought an even deeper sense of loss and trauma to all our lives. The calm periods of leveling off have been followed by clusters of new cases that bring illness, death, fear, and more trauma. Gabor Mate MD describes trauma as “an unhealed wound.” Right now, COVID puts many of our collective unhealed wounds in stark focus. Caregiving is ultimately about tending those wounds, about attempting to mend and heal them. Caregiving is about trying to help someone else find healing even when the caregiver is also facing pain, trauma, and fear. In her book Loss, Trauma and Resilience: Therapeutic Work with Ambiguous Loss, Pauline Boss discusses the role of hope, creating mastery and connection to life as ways of healing from loss and trauma. Good caregiving--real caregiving—is about these things. Good caregiving is by nature a revolutionary act in our culture. We live in a society that has, for a very long time, seen many people, our elders included, as disposable, as not worth tending. Good caregiving is a direct challenge to that. Good caregiving says old people, sick people, children all have value. Good caregiving says all people who need help have value.
A few years back, while getting ready to give a talk, I came across two images that I have thought about ever since. One was a slide of the flag, our star-spangled banner. It was torn, repaired, had pieces moved around, had stains and was old. This piece of cloth had been handled and repaired many, many times. Publicly, it is one of the most symbolic objects in our culture. The other image was of a small ceramic cup that was used in the Japanese tea ceremony for hundreds of years. It was also rough, very simple, and fragile. This cup was covered with cracks and had been painstakingly mended with gold. Each repair was an act of reverence. Every bit of mending a prayer, a way of acknowledging value. Yesterday, I watched one of our caregivers help an elder put on lipstick and comb her hair. I thought of this flag and cup while watching this. Both the elder and caregiver were focused on one another. There was a sense of reverence there. The two women were holding a prayer in many ways, seeing value in one another, and bringing beauty into the life they shared.
Now in the face of pandemic numbers that are simply brutal, in the face of fear and anger, caregivers are critical to our world. The work they do is hard. It is physically demanding and tiring. It is a challenge to be present emotionally in the face of all the wounds people can have in their souls and on their bodies. Caregiving is a call to be with someone in the darkness and to help them find their way back to beauty. Caregivers do save the world, every day, one person at a time.