The title may be misleading. I’m not going to dive in to how to find services or how to get medicare or medicaid to pay for services needed. Not this time, anyway. This time the focus is on the art of being on the receiving end of service systems.
As a parent of a child with a disability, I have been dealing with this for a number of years.
Getting help. That’s what we’re looking for. “Help,” of course is different in each situation. Sometimes it is as simple as wanting a nap. Other times it means having someone drive to appointments. Sometimes it’s having someone decode the most recent report or billing statement. Seems simple, right? It’s not.
Asking for help involves risk. First, admitting that you need help means conceding to your vulnerability. That’s harder than some than others. Second, just as you reach that state – of recognizing you can’t do it alone – you find yourself in a situation where getting help or receiving service causes more stress than wading through the day-in, day-out wear and tear of 24/7 care for a family member on your own.
Why does this happen?
There are many reasons. This blog is going to focus on the people piece. Receiving help from people with whom you do not “click.”
After a recent experience with this, I did some searching. I found articles about “how to deal with difficult”… bosses, co-workers, friends, and parents (as in parents of children in school, not our parents). But I could not find anything about being on the receiving end for needed service from someone who pushes all your buttons. I take umbrage to labeling people “difficult,” because really, these are people who mean well. More often than not, it’s a communication issue or personality clash.
When I read the articles about how to handle bosses, coworkers, and teachers dealing with parents, I found many similarities. One article took the time to name different personalities: “the whiner,” ” the Know-it-all,” “the bully,” and so on.
It seems to me, that there are two sides to every story. Those who provide the services seek methods of working with and being successful with people who have these personalities. But I also believe that those who receive services need some tools to help them survive having people with these personalities providing services as well. This is especially true for those who are more vulnerable: the elderly and those with disabilities.
I don’t know what it is, but lately there’s been a plethora of articles and stories to illustrate this point in our local paper – to an extreme, of course. There was an elderly man who practically gave a woman everything he had to be his care giver. She repaid him by staying out late partying, and when he complained (as many employers might), she hit him with a clock and left him on the floor, unconscious while she went to bed. There was a story of a very talented man who has cerebral palsy who hired someone to help him with his care. Over the course of a few months, the care provider began to neglect him until this man called a friend to help him. He was found in an apartment that reeked of urine, unable to get to his wheel chair.
Those are extreme examples of bullies and neglect.
For those of us who are sandwiched between our parents, who need growing amounts of support, and our children with disabilities, who have always needed our support, managing the service providers – doctors, book keepers, house cleaners, direct support staff, teachers, and so on – becomes overwhelming even on a good day.
And yet, there are still too few resources to equip us, and those we love, to handle the bully, the whiner, the “know it all.” Though the providers are well-protected from us.
Will anyone take up the gauntlet?