When I was fifteen, I got my first job: providing care to my neighbor who had multiple sclerosis. I struggled with the demands of the job, but ultimately found the experience rewarding enough to seek out more similar work. More than ten years later, I like to reflect on my experiences, confident in my knowledge that the people to whom I have provided care have taught me much about paying attention, offering compassion, and opening myself up to the care I can, in turn, receive from them.
A great deal of flexibility is needed when it comes to caregiving. I have found that what has worked for some people has not worked for others, and indeed, what has worked on one day with a particular person may not work on another day with the same individual. Of course, some aspects of caregiving are technical and clinical, but this kind of relationship works best when both people are on both sides of it: both are giving and receiving care.
Many parents have shared with me the anxiety that can accompany the transfer of their child’s care from their home to a community setting. This concern has been articulated with many different questions: is the new home going to remember to prop her foot up on a pillow so she doesn’t get a pressure sore on her heel? Are they going to remember to check for the cleanliness of his hair? Will they ensure that she dries herself under each breast, that the moisture doesn’t stay there? Are they going to draw him out, to make sure he eats properly? Are they going to recognize the signs of my non-verbal daughter experiencing period cramps?
Caregiving has never been boring to me. In my experience of providing care, few formulas are helpful. Instead, I have always had to pay attention to the particular person I’m with. I used to live with a 93-year old woman and people would often ask, “What is it like to live with someone that old?” I would often smile and say, “Oh, I have no idea – I only know what it’s like to live with Joyce.”
This is a common way of thinking. Many will ask, what are people with dementia like? Or, do people with autism like such-and-such a thing? These questions are not all bad, but in my experience, the answers depend entirely on the person and the day and the environment.
With particular people, in particular places, generalizations lose their helpfulness. If you ask, “do people like talking or do they prefer to sit in silence?”, the best you may be able to say is, “John often likes to talk,” or “Cindy loves to sit silently from time to time.” But even John may have quiet days and Cindy may have chipper days. So caregiving requires more than roteness, more than habitual task-orientation.
A caregiver, at his or her best, is dispositionally curious and open. Does this person want to talk right now, or do they want to sit silently? Should I hug this person in distress, or not? Should I push this person’s wheelchair, or should I let them maneuver on their own? Should I stay in the bathroom to offer support, or should I step out to provide privacy? Should I deflect, or should I engage the question?
As I write this, I’m reminded of one of the Bible’s descriptors of love: love is patient. Patient love is willing to acknowledge that sometimes tying one’s shoes takes 25 minutes. Patient love accepts that some moods take awhile to overcome, that some ideas take awhile to articulate, some words take awhile to form, some miles take awhile to travel. Patient love is thorough love; it isn’t in a hurry, it isn’t rigid. It responds to the person.
To behold a person, day after day, with openness, care, and attention is a profound offering of grace. But it is also an opening up to grace. These relationships, like all relationships, are oxygenated in an environment of authentic honesty, mutuality, and trust. This dynamic is delicate, and essential. When I ask for permission to assist an old woman in the bathroom, I am asking for her trust. When a young man suggests an activity to me, he is inviting me to join him in the back-and-forth of his play. When I am upset about anything, and I bring that into my day, I may say to the person I am with, “Hey, I’ve got a situation going on at home. I’m happy to be here, but I might be kind of quiet today. Is that ok?”
Over the years, I have prayed many prayers for the people whom I’ve been entrusted to care for. But those outgoing prayers are not disproportionate to the incoming prayers that others have offered on my behalf. Indeed, more times than I can count, when I have shown up to offer myself as a provider of care, the script has felt flipped, and it is I who walk away feeling tended, knowing I have received nurture, kindness, and patient love.