The next time you’re stuck in traffic, say a little prayer for caregivers. You probably know some personally, but even if you don’t, every one of them needs all the help they can get. Caregiving is an impossible role.
When children are first born, taking care of them is pretty daunting. You don’t know what they need–or want. You don’t know how to do whatever it is that they are wailing for. You are sleep deprived and shackled to someone else’s needs all day every day.
This is what it’s like to be a caregiver. Except babies grow up. When you are caring for someone as they advance into feebleness, usually because of some physical condition, you don’t have a timeline that reassures you things are going to get better. To the contrary, in typical caregiving situations, things are growing progressively worse.
Babies will cuddle and coo to make you feel all the strain is worthwhile. That’s not what happens with end-of-life caregiving. Often, instead of gratitude, a caregiver gets sworn at and cursed out because of the nature of the decline.
Even in the simpler cases, where someone you love has a grave illness and you’ve stepped in to help on a temporary basis, you have no idea how long it’s going to take for that person to get well enough to take care of themselves. And while you are doing that noble work, your own life is quite literally hijacked. Plans you made get turned on end. Projects you had planned to work on gather dust. You cook what the patient needs not what keeps you healthy. Even going out for a walk may not be feasible.
Instead your focus becomes someone else’s needs. And that someone, who used to care for you in many cases, is so far into the difficulty that they don’t even know what they are asking of you. Often, a loved one does this work without relief. It seems so trivial, this loss of identity–at least if you’re not the one experiencing. But being sucked into someone else’s illness and decline drains your own energy and joy in life with alarming speed.
Right now I can name five friends currently caught in this kind of caregiving. Two have husbands with Lewy Body Dementia (a form of decline that puts Alzheimers to shame in terms of the amount of “on call” attention the person demands). One has a husband with a mystery malady that’s caused him to lose 75 pounds–and this man was not overweight to begin with. One is caring for her mother as she deals with terminal cancer–and the mother/daughter bond has not been that loving one we all wish we had. And one is dealing with a stroke-incapacitated alcoholic husband with dementia who could just as easily start the house on fire as take a nap.
This kind of caregiving takes an incredible toll. You don’t know what’s going to happen next but whatever it is will not be fun. Every new turn in the patient’s health creates a new sense of being inadequate. So often you have no idea what to do–but you know you have to do something.
You end up on a first name basis with nurses and pharmacists, social workers, and therapists of all sorts. You’ve memorized what is and isn’t covered under current health care arrangements. And still you are caught by surprise. Again. And again. And just when you think you are done for the day and are starting to unwind from the tightness of what’s being expected of you, all hell breaks lose and you’re in the emergency room until three in the morning.
Caregiving is hero’s work. They need more support than they get from the community. A lot more. So at a minimum, if you a lucky enough to be out and about all by yourself, doing what you want and having a lovely day, say a prayer for the caregivers. Even if you are having a crappy day and are trying to please the boss from hell, put in a good word for those doing the caregiving work. There is none harder.
They give so much and no one even notices.