People talk about caregiving for a parent as a reversal of roles. Yes, one day they’re helping us get dressed in the morning and then one day it’s us who is holding a sleeve out and gently washing their face.
As they care for us they’re teaching us to be more self sufficient. They teach us to be wise and strong in the face of challenges and adversity. They teach us to be loving and dedicated to our family and friends.
These are the lessons we need to live a good life. They’re also the lessons we need to be a good caregiver.
We stop needing the help of our parents gradually, just as they begin needing our help gradually. For the fortunate among us, there are many years of mutual support, where we give to each other joyfully, neither of us needing help, but all of us benefiting from it.
It can be difficult to accept that one needs help after many years of living independently. But none of us are truly independent. No one would want to live a life on their own, relying solely on the fruits of their own labors. We’ve evolved to thrive as part of a community. Even the most independent of us is tied into a dense network of support. We are constantly doing paid and unpaid work for each other and receiving the benefits of the work of others.
Some of us are uncomfortable with the thought of someone helping them in person. We would never hire a cleaning person or a cook. But we gladly live in houses built by others, enveloped in clothes made by others, eating food grown and often prepared by others. Every product on the shelves of a store or in our homes represents the labor of dozens of people. While we want that labor to be done freely, under equitable conditions, we rely on it completely.
Sometimes life ends suddenly. We all know someone who appeared to be the image of health until they had a heart attack or a brain aneurism. Sometimes disease can strike quickly, withering someone within a matter of months or weeks. Many others have a long and gradual transition from life into death.
Death is not a dirty word. Why do we fear it? Fight it? Deny its existence as it wends its way through our lives? There is no faith that teaches us to fear death. Death is a part of life, a loving embrace of eternity, the crescendo of our emotional lives, the culmination of a life well lived.
As our parents approach death, their bodies and minds force them to become closer to us. Their children. Their friends. Their community.
Those of us who have wandered, physically and emotionally, are called back home. Our souls need to be with our parents, the embodiment of their creator, as they prepare to die. The ties that have stretched and weakened — as the ties between parents and children are meant to do, as it’s necessary for children to live their own lives — are brought closer and strengthened.
So often I see people struggle under the physical strain of caregiving. Lifting bodies. Bathing bodies. Not getting the sleep our bodies need. Failing to feed our own bodies the nutrition we need. Children feel they must alone carry the burden of caring for their parents. One child shoulders it all as other siblings go about their lives unchanged.
Dying is meant to bring us together. This long, slow decline of dementia or Parkinson’s or MS is not meant to pull one person into isolation, despair, and poverty. It’s meant to pull us closer into the web of community. The longer the illness, the greater the dependency of our parents on their children, the more we need a community that can sustain us.
The most critical, and most neglected, part of caregiving is the spiritual part of care. Anyone can look upon them kindly as they dress them. Anyone can ensure that the laundry is done, the floors are clean, healthy meals are prepared. It is a special experience to lift the cup to their mouth, brush the hair from their face, yes, but you do not to do this every day. It simply needs to be done. If these tasks are exhausting you, let them be done by someone else.
Be there for them, truly, with every level of your soul. Hold space for them. Reminisce with them. Love them deeply. Fall asleep next to them watching movies from their childhood. Take them on drives to places they took you as a child. Ask them the questions you always wanted to ask. Ask them the questions you’ve always hoped someone would ask you. Draw pictures with them. Look at the stars with them. Listen to music neither of you have ever listened before. Laugh with them over things that are not funny, do not make sense, are too cruel to bear without laughter.
No one can replace you in these things.
I see people exhausted from doling out medication, running errands, providing meals, adjusting this frail body every two hours. I see people convinced that they must do all of these things themselves, even as it drains them of their own life. Even as it disempowers them. Even as it turns them bitter and cold with exhaustion. They are so determined to care for their parents, yet they become resentful and depressed. They neglect themselves to the point where they cannot help but neglect the person they are caring for.
Do not drain your own life to help your parent die. Supporting someone else is meant to nourish our own souls. It is supposed to tie us closer, not isolate us. It should help us discover the depth of our own strength and the love we have in our lives.
No one should be just a caregiver. All of us who are giving care are meant to be receiving it from so many other sources. Just as our parents are meant to embrace our help, allow us to come back into our lives until we are fully intertwined, and then let go as they leave this world — we are meant to accept the care and support of the people around us. There is no unit of two or one, each of us is meant to be one piece in something greater.
The person who dies alone is the person who fights their interdependence. Who is afraid to love and be loved.