By Hester Hill Schnipper
Sometimes You Can't Win
Why it's impossible to be a perfect caregiver
By Hester Hill Schnipper
It was a surprise the first time I heard it: "It was really tough when I had breast cancer," said Donna, "but it was much harder now that my husband is sick."
Over the years, I have regularly heard this comment from women or men whom I first met during their own cancer experience. When you are the patient, you know how you are feeling, you know what you need, and you are nominally in charge of your life. When you are the caregiver, whether you are a spouse, adult child or close friend, the overwhelming feeling is helplessness.
The responsibilities and tasks can seem beyond your control. In addition to the normal obligations of your own life, you likely have assumed those of the patient. There are also the never-ending details of medical care: doctor appointments, insurance forms and treatment scheduling. Then you try to become an ace homecare nurse. If the workload does not exhaust you, the feelings will. You are probably scared, sad, tired and frazzled.
Caregivers usually find little empathy for their situation. Everyone asks about the patient, and hardly anyone remembers that you, too, are struggling. The world's expectation is that you will manage as a faithful companion, advocate and caretaker without complaint. No matter how much you love someone, this may be an impossible burden.
As an oncology social worker, I have spent more than 25 years assisting cancer patients and their families and have known countless family members who struggled guiltily with their roles. "Guiltily" because of a usually unspoken longing for a vacation from the troubles, a dose of wellness guilt, and rarely expressed anger at the patient for certain behaviors. When you have spent hours laboring over a special soup, or traveling to multiple stores in search of the perfect body lotion, or carefully scheduling short visits from special friends, and the patient rejects your attempts at comfort, of course you are angry. And these are all normal, natural and healthy emotions. Yes, you do need to keep trying your best to be responsible, loving and helpful, but it is completely natural to harbor negative feelings.
Often patients don't help and can be incredibly ornery. When someone is sick, what he needs or wants may change constantly. Caregivers who try to respond to cues, learn from past experiences and remember the long-held preferences of the patient may well find that their best efforts are sometimes rebuffed. One day, sympathy and a backrub may be valued. The next day, any similar words or actions could be met with anger. One moment, the patient wants to be treated normally; the next, he wants to be coddled. One minute, she wants to cry and talk about her fears; the next, she wants to totally deny the seriousness of the illness and talk about a distant vacation plan.
It is important to lower your expectations. There is no such thing as a perfect caregiver. You may respond perfectly to a particular crisis and manage a difficult day with grace, but there are certain to be times when your very best loving efforts are less successful. The bad times do not mean that you are a bad person, or even an inadequate caregiver. They mean only that you, too, are human.