Helping at-home caregivers ask for help

NINETEEN AND A HALF YEARS AGO, IN 1977, MY HUSBAND JEFF, A PHYSICIST AT THE UNIVERSITY OF PENNSYLVANIA, WAS DIAGNOSED WITH MULTIPLE SCLEROSIS. WE HAD BEEN MARRIED THIRTEEN YEARS; OUR THEN TWO CHILDREN WERE AGES FOUR AND SEVEN. AT FIRST IT WAS ONLY A MATTER OF HIS LEANING ON MY SHOULDERS IF WE HAD BEEN WALKING DOWN THE STREET MORE THAN A COUPLE OF BLOCKS, OR CONTINUALLY ASKING US TO BRING HIM OBJECTS FROM ACROSS THE ROOM. BUT TEN YEARS AND TWO CHILDREN LATER, WE WERE DEALING WITH THINGS LIKE TRANSFERRING, TOILETING, THE NIGHT RESPIRATOR, AND HOME HEALTH AIDES. HE WAS WAKING ME UP FIVE, TEN, OFTEN TWENTY TIMES A NIGHT, FOR TURNING JARS, BEDPAN, FALSE ALARMS ON THE RESPIRATOR, AND SCRATCHING ITCHES -- AND HE COULD NOT BE LEFT ALONE DURING THE DAY. WE HAD A CRISIS ON OUR HANDS. * BY THAT TIME, A PRIVATE AGENCY WAS FUNDING US FOR SOME HELP, BUT IT WAS NOT ENOUGH. NOT NEARLY ENOUGH. I SPENT THE NEXT SIX YEARS -- UNTIL JEFF WENT TO LIVE IN A RESIDENCE FOR DISABLED PEOPLE -- SEEKING OUT ADDITIONAL HELP FROM OUR FAMILY AND FRIENDS. IT WAS NOT EASY. IT TOOK SEVERAL YEARS TO GATHER MY COURAGE AND DEVELOP SOME STRATEGIES. MOSTLY, I HAD TO ARRIVE AT THE MIND-SET THAT IT WAS A CRISIS WE WERE GOING THROUGH, THAT IT WAS APPROPRIATE TO ASK FOR HELP, AND THAT I HAD THE RIGHT TO DO SO -- THE RIGHT TO GATHER A SUPPORT SYSTEM. * I WISH THAT, AMONG THE MANY SOCIAL WORKERS AND OTHER PROFESSIONALS WHOM WE SAW OVER THE YEARS, ONE OR TWO HAD ALERTED ME TO THIS POSSIBILITY, AND GIVEN ME SOME DEFINITE POINTERS. IT WOULD HAVE MADE A VERY BIG DIFFERENCE IN MY LIFE IF SOMEONE EXPERIENCED AND KNOWLEDGEABLE HAD ENCOURAGED ME IN THIS DIRECTION AND PERHAPS DEFINED IT AS A PROJECT -- SOMETHING I COULD COMMIT TO. HERE ARE A FEW THINGS THAT SOMEONE COULD HAVE SAID: 1. Jeff might be your husband, but he's his parents' son, his brother's brother -- and his community's citizen. Taking care of him is not only your responsibility. 2. "Contribution" not "handout" is the word. 3. Not only do you have the right to ask for help, but you have the responsibility. If not to yourself, then to your children and friends. You are not only your husband's wife, but also your children's mother, your sister's sister, your friends' friend, and your community's citizen. (You are also your self's self.) You have no right to divide yourself -- and your time and energy -- so unequally. You are a citizen of the community, not only of your marriage and your household. 4. It is extremely difficult if not impossible to feel loving and compassionate toward someone while you're also running for your very life. The survival instinct is too strong for that. That is, the commitment to asking for help is also a commitment to fulfill your responsibility toward the ill person. He has a right to more people helping him. And then, toward implementing that commitment, I could have used some concrete advice and guidelines. I realize that not all caregivers would want (or realize they want) such advice, but if a professional had felt me out about it, she would have seen that I wanted it very much. On my own (with input from the support system I developed), I eventually came up with detailed approaches to three broad strategies: writing asking-for-help letters, calling family meetings, and networking. Writing asking-for-help letters It is certainly easier to get up the nerve to write a letter than it is to make a direct confrontation. Letters also have the advantage of distance. First, they allow the writer/caregiver to say all she intends to say without interruption or distraction. Second, they allow the recipient time and space to reflect without interruption or distraction, and to get used to the idea. My own letter to "Aunt X and Uncle Y" -- actually to various Aunt Xs and Uncle Ys -- was three-and-an-eighth pages long, typed double-spaced. "Hello," it began. "I know it's been a long time since we've been in touch. Life has kepy all of us busy, but we have certainly not forgotten you. …