A few months back, in a chat with some fellow ALS-ers, a common but difficult topic came up: how to ask for help.
People with ALS need help -- it's the very nature of the disease. Some of us rely on home health care professionals, but most of us depend on a family member: a parent, a sibling, a spouse. We get used to their help, to asking for it, to accepting it. Outside help is, however, a totally different animal.
What do you do when someone says, "Let me know what I can do to help"? What do you do when you have a need that is beyond your caregiver's ability? What do you do when you ask a friend for assistance and the friend says no?
For a few lucky people, the answers to these questions come relatively easily. They may have a "Wish List" of needs, so that when someone asks, "What can I do?" they have an answer: Could you check my mail at the post office? Can you pick up some milk for me next time you go to the grocery ? I'd love to try that new Mexican restaurant: would you like to go with me?
They may plan for backup or alternate care for those times when their primary caregiver is overwhelmed or over-tasked. They may (they'd better!) know when to call 911.
For that third question – and this is often a doozy – they may be able to take it in stride and roll with the denial. They may be able to propose an alternative: "I guess museums aren't your thing. How about going to a movie instead – you pick." They may feel comfortable asking for clarification: "Is there something else you'd rather do, or am I asking too much of you?"
But those are the lucky ones, the rare ones, the hypothetical, idealized, maybe even imaginary ones. Not everyone has a network of friends neighbors and family ready and willing to help. Not everyone lives in a "village." Not here .
There is something in the American psyche, especially among people of a certain age, that makes asking for help tremendously difficult. Maybe it's pride. Maybe it's a reluctance to air dirty laundry in public. Maybe it's a disinclination to impose. Maybe it's part of the American frontier heritage, that rugged individualism that makes us say, "I take care of my own."
If any of these are true, they are especially true when it comes to personal issues, notably health. The fella who wouldn't think twice about asking his neighbor to jumpstart his car or hold a ladder or give advice on a plumbing project would sooner fly to the moon than ask that same neighbor to help lift his wife from the couch to her chair. It's easy to ask a friend to watch the cats for a couple weeks; it's hard, hard, hard to ask that friend to watch your husband for an hour.
And don't even get me started on family. Odd little kinship quirks can become flat out dysfunction when we try to ask family members for help. When they are supportive, we may fret that we're taking advantage. When they are disobliging, we get royally pissed.
Speaking of family, I remember when my father was fatally ill with brain cancer. He was still living at home, and Motherwas his primary caregiver (with occasional help -- finally -- from a home health aide). Dad's coordination was profoundly impaired, and he was prone to falling. When he did, Mother – my poor little mother, nearly crippled from rheumatoid arthritis – would pull and press and strain to pick him up by herself. This could take hours. This could leave them both crying.
Why in the world, I asked when I found out what was going on, didn't Mom called 911? Why didn't she call a neighbor, all of whom were close friends, to help?
She didn't want to call 911, she said , because the whole neighborhood would think there was some terrible emergency. She didn't want to call a neighbor she said, "because that's not what my friends are for." In her world, you suck it up, you do for your own, you keep your problems behind closed doors.
Isn't that sad ? Isn't that infuriating?
And isn't it sad and infuriating and bewildering – and, let's face it, oh so commonplace -- that many of us insist on following variations of that attitude, that behavior... day after day after day after day?
