Wednesday, April 23, 2014

As the world turns

The thing with caregiving, especially long term caregiving, is that it just doesn't stop. I guess that's why the word 'long' is in the title huh? Family members get tired asking, they stop calling for follow up (or they check in once every many months), friends check in periodically or not at all because frankly, there are only so many commiserating noises one can really make.

I remember 15 plus years ago, when my grandmother was taking her final journey, saying to a girlfriend at the time that I just wanted a week off. "One week", I said, "to get some rest." But I knew, that if I got that week off, it would mean that the process was complete and I'd get a whole lot more than a week off. There are no breaks allowed in long term caregiving and even if you have enough help, which we certainly did at that time (I think there were seven people involved in giving that round the clock care, plus a cousin who is a nurse, who would come to check in periodically), there was still no let up. It's a never ending list of things to do.

If you've never done it, up close and personal, you can have no clue as to what it will take. Nor indeed, can you have any clue as to what your checking out may leave others carrying.

I recently read a sad story of a man who returned to his mother's home, to find his sister - the primary care giver - collapsed, dead in fact. In his posting, he mentioned that he had been 'having difficulty seeing his mother in that state'. I immediately wondered how that 'difficulty' had been manifest. Had he checked out? Had he rarely visited? Had he simply filled up his time with a thousand other very, very important things, leaving no time to visit with his mother or assist his sister with their mother's care? There are a good many ways to 'have a little difficulty'. Many of those ways involve checking out and staying out of the fray.

I don't know the gentleman and so I can make no claim about how he was handling his business. All I can say is that when there are those who are 'having difficulty' managing their emotions and the choice (because yes, it is a choice) they make is to step back, trouble ensues.

My mother always used to tell me, "When you say you can't [do something], it means I have to." It used to annoy me because she was right and because I really didn't want to be bothered. And now here I am, hoist with my own petard, as the Brits would say. It would be funny if I had the energy to laugh.

The thing with care giving is that it doesn't end because you're tired or you need to go to the doctor or you just don't wanna be bothered or you have other more pressing concerns, like looking for a job, or starting a business. The thing is that it's unrelenting. The thing is, as the brother mentioned earlier learned, it's also life-altering and in some cases, life-shortening. Research indicates that caregivers can expect a shortened life expectancy, about ten years shorter. While caregivers are busy caring - for others - ain't nobody caring for them. I wonder how much of that life shortening is consequent upon the anguish, anger, resentment and eventual resignation of having to beg for help? Or contingent upon the guilt you feel over the things you simply let fall by the wayside? Or the stress of knowing that the only thing you can let fall, is yourself? Meanwhile, the world keeps turning, blind and deaf to the caregivers' plight.

Never mind what anyone says, care giving is unnatural, because we are human and selfish, if we can, we skate and give as little of ourselves as we can get away with. Brotherman above has just found out that that only works for so long. Bodies give out. Spirits give out. And then what next? The world keeps turning. Care still has to be delivered. Maria Shriver's father had Alzheimer's Disease and yet it was her mother, the primary caregiver, who expired first. See how that works? She wasn't the first, she won't be the last. My Granny had two friends, Gladys and Editha. Editha had AD but it was Gladys who had a stroke and left 'Ditha to be cared for by others. That could have been 30 years ago. It happens. This is not new.

the globe photo: The Globe. Globe.gifThe thing of it is, giving care ain't fun, it ain't cute but it still has to be done. And then, once it's done, it must all be done again. And again. The world, you see, keeps turning. Case in point: Easter Sunday, Mother had another medical drama. She fell out of her wheelchair and went face first into a hard floor. One ER visit, replete with CAT scan and such like later, she was admitted to hospital for observation.

I spent 7 hours with her in the ER on Sunday, six hours in her room with her on Monday and three hours on Tuesday. It's Wednesday and I can do no more. It's my day of rest. It's nearly 1 pm EST and I'm still in my pjs. After five calls to the hospital, I've finally got an update. Once again, she didn't eat much breakfast, but otherwise, she's doing fine. I suspect she'll be released tomorrow. An hour after I made my calls, I get a call saying that they'll discharge her today. If I had the strength, I'd race up there to take her home, but I can't. I'm too weary. She'll have to suffer thru an ambulance ride because if I do it, I'll soon be taking an ambalamps ride of my own. I fear the outcome of my ride will not be as hers.......just sayin'. I'm skating on some thin ice, never mind how much time Jillian Michaels and I spend together jumping up and down. An ambalamps ride for me .... yeah let's just skip that if we can.

Meanwhile, the world keeps turning. The things I need to do to get myself back on track, they still need doing but they have to take second place to my role with Mummy. Better still, I have to figure out how to get them to share first place. No easy task that.

Long term care.'Long' is the operative word and 'care' has to be apportioned carefully, to both patient AND self. Good luck with that. If someone knows how to do it right, I sure wish they'd tell me. I'm clearly going about this entirely the wrong way. 

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