In the course of a day I recently encountered two separate situations of people who were care givers of someone with Down Syndrome. In the brief glimpse I got of their lives in those moments, their demeanor of care differed dramatically.
The first encounter: I was in a local hospital going to a doctor's appointment. A woman was escorting a young man with Down Syndrome to the same elevator, and, as it turned out, to the same clinic on the third floor where I was going. The young man was slow and distracted easily and so when the elevator arrived and opened, I and another passenger entered while the woman called to the young Down Syndrome man to come with her to get in the elevator. She was short and curt with him. "Hurry up! Come on, people are waiting!" She turned to me and the other man and apologized. "He's a little slow." The young man dutifully started toward the elevator and it became clear that he had some sort of difficulty walking and he moved at a slower pace. The woman, self conscious that others were waiting, barked again for him to hurry even though he seemed to be going as fast as he could. Yet the whole incident lasted less than a minute and neither I or the other man were in the least bit inconvenienced.
Upstairs she again prodded him along with sharp words to shepherd him into the doctor's office. Thereafter I was parted from them as I went to my appointment and they to theirs. I do not know if it was he or the woman seeing the doctor, nor could I tell if she was his mother or other relative, or if she was some appointed care giver like a social worker. But I couldn't help but wonder if her curtness with him was an ongoing habit, or merely a mode of managing him in public so that he didn't inconvenience others.
The second encounter: in the grocery store, just hours later, a young mother was pushing her grocery cart through the store shopping. As she did so, she spoke almost continually and with tenderness to a very young Down's Syndrome child, no more than 18 months old, in the child seat of the cart. She whispered sweetly about what was next on her list to get, smiling and cooing over the little one. Her demeanor could not have been more different than the first woman. This encounter was shorter, but gave every indication that this young mother cared for her child with loving kindness.
It would be irresponsible to jump to conclusions about either situation, especially the first, and conclude that the woman caring for the young man with Down Syndrome is calloused and harsh with him all the time or that the young mother is always a model of patient virtue. The situations are also poles apart. The young mother is caring for a baby, possibly not walking yet, less able to get into messes, not as likely to test the patience of a frazzled, exhausted mother. The young man, mobile, capable of wandering and dawdling, is more able to try the patience of his care giver.
Yet I couldn't help but view the first woman with some disdain, even though I simultaneously realized that her job was difficult beyond anything I have experienced. I don't bear the burden she likely shoulders on a daily basis. But could she not, I wondered, shepherd the young man with more patience and compassion, and preserve some of his dignity as a person? One got the sense that she remained in a near constant state of low grade exasperation with him, that it was his responsibility to meet her requirements more than her responsibility to patiently care for his needs.
Jane Gross is a New York Times writer who has written extensively on caring for the elderly based on her care giving for her elderly mother. In one blog entry she wrote about taking her frail mother to a clinic for an MRI:
I learned this much: Never shame your mother into rushing to keep up with you. First of all, it’s not nice. Second, both of you will have to cope with her broken hip if rushing leads to a fall. And this: Simply slowing the pace isn’t sufficient. If your mother is as observant as mine was, she will see it if your face reflects impatience; it will make her feel guilty or embarrass her.
No one can be placed in the role of caring for another, whether it is their own loved one, or a patient under their professional care, without in some measure giving away part of themselves to the person with whom they are charged. Someone filling that role deserves respect. But it seems from the examples I saw that there are those who give away more of themselves than others, who, with greater self sacrifice, realize that care giving extends beyond meeting the physical needs, but includes care of the soul, of giving respect, dignity and kindness. Giving only what is required will meet physical needs yet starve the heart. Giving away the greater mercies of patience, gentleness and compassion, nourishes the vulnerable heart of one whom the rushing world overlooks, and who needs it more than most.