The theme for August's Scientiae is transitions. All month long I thought I would write something about the transition that was forced on me some time ago, to which I am still not quite adapted: from happy participant in the paid workforce to migraineur on disability. But as it happens, I've got other things on my mind.
The major transition in my life this past year has been helping my mother move from the house she lived in all her life to an assisted living facility. It's not just been a transition for her; it's affected the whole family. The very notion of a stable "home place" has been taken from us, as I've blogged about. Of course that notion was an illusion, but now the illusion is gone.
I think what I was least prepared for, or least expected, in this new phase, was how much my mother would occupy my thoughts, how much time I would be devoting to her needs. Looking back, I think I naively expected that the height of the transition period - finding an AL facility, cobbling together home care for mom till a place was identified and she could move in, making the arrangements for her move, carrying out the move and settling her in - would of course be exhausting and time consuming, but then everything would settle down, she'd be cared for in the AL facility, and life (for me) would more or less go back to normal.
That's not how it works, though. No matter how good an AL facility is, you have to keep your eyes open and stay alert to what is going on with and for your family member. We've been struggling for months with the diet my mother is receiving - she's diabetic, and what she is being fed is, quite often, really not appropriate for someone with diabetes. It's a delicate dance, finding the right way to make your wishes and needs for your family member known without coming across as obnoxious and meddling, and thereby antagonizing the people responsible for their care. (For the most part they are wonderful with my mother, and her health has clearly improved since she's moved there.)
My mother suffers from myriad health complaints, that necessitate a slew of doctor appointments, seemingly endless. Appointments are the Hydra of my mother's life; each one completed seems to generate two more. My siblings and I have set up a Google calendar to keep track of her appointments and who has taken responsibility for getting her to which one. Every so often I'll reschedule a batch of her appointments to fall together in a short time span so that I can take her to them during one trip home. Emails fly back and forth between the siblings; what about this appointment, who's taking her to that one, do we have this one covered, can you reschedule that one, etc.
And then there is the house to be maintained. The lawn must be mowed, someone must be paid to do that; the furnace needed inspected and an appointment had to be coordinated with someone's visit home; the house needs a new roof and I am trying to manage that project from afar. Many of the management details fall to me because all my siblings work full time and I am the one with time on my hands. I also have power of attorney for my mother's finances, paying all her bills, overseeing her investments, handling her taxes. I cannot believe, sometimes, how much paperwork one small coal miner's wife in southwestern PA can generate!
It sometimes seems not a day goes by without having to do something for my mother - pay a bill, deal with a health insurance issue, talk with someone at the AL home, schedule or reschedule an appointment, deal with a house issue. We are still finding the right mix of things that mom needs to be comfortable and happy in her room at the AL home, and now she thinks she might like a new walker, one with a seat. There are many different models; some fold up, some don't, there is a large range in price. How do you choose one? Why isn't there a store where I can just go and look over a bunch of different walker styles? Would you buy a bicycle or a motorcycle over the internet, without being able to look at it or test drive it? Nothing in our society, it seems, is really set up in any way to make it easy to find things to meet an elderly person's needs.
What if you have a full time job and you are responsible for all of this? What if you are the only child, or are a child in a family where the other siblings refuse to shoulder their part of the work? What if you have to take on all this labor, and you are also trying to maintain some kind of research program? I just don't know how you would do it. Certainly a professor going through what I did last November-December-January, as we looked for an AL home and got mom moved in, would have benefited from family-friendly policies that allowed for some time off for elder care.
Well, I could babble on forever. This gives you some idea of what is coursing through my head on a daily basis. With all this stuff crowding my brain, there is little space or creative energy left over for other things, like blogging. It takes time and concentration to write, and my concentration is always slipping away to whatever it is related to my mom that I am worrying about that particular day. As I look back over this year, I feel that my blogging has really suffered because so much of my time and energy goes to All Things Mom. And don't get me wrong, I am extremely glad that I am able to do the things I can for her, and I know how much it means to her. But it isn't done without cost.
All over the country, it is primarily women who take on labor like this. It is labor that goes unnoticed, unrecognized, unacknowledged. It is not seen for the tremendous expenditure of emotional, intellectual, and creative energy that it is. Or if it is, it isn't valued for much, because there are no dollar signs attached to it. Women labor away, and the labor comes at the cost of other creative work, and then some moron comes along and tries to tell you how women just aren't willing to work the long hours in industry or academia like men are. Women are willing to work long hours - women ARE working long fucking hours, let me tell you. They just aren't getting any glory for it.
It's amazing how much coordination goes into keeping a parent home or keeping a parent healthy. Doing it at a distance is grueling. My sister was an eldercare manager and did so much of itso gracefully for years. None of us realized how much work went into keeping my parents stable until she became critically ill. Since then, it's been a battle to get them to allow others in the family to help out. They seem to have less trouble letting my children do things for them than letting me, and they continue to call my very ill sister when they are in crisis.
At least you managed to get her into the care she needs. Mine plan to leave their home of 50+ years in body bags. This could be ugly. Actually, it is ugly. It's just not going to get prettier.
Hang in there. There may not be any glory, but there must be some kind of reward for being a dutiful and loving daughter.
We're going through the same only child-octogenarian parent thing right now, and we live over 300 miles away from my mother. We can't move closer to her because there are no jobs for us there; if she moved closer to us, she'd lose the support of other relatives, friends, and her current doctors--and then have to be uprooted again when we move to wherever we get permanent jobs. (And that's assuming that our next move will be permanent. We can't count on that either.) We're currently working on getting her moved into a congregate-living community, but it's been difficult every step of the way, and for every reason imaginable.
Good luck with all of this -- my thoughts are with you and your mother.
A thoughtful and moving post. Like my mother always tells me, usually the right thing and the hardest thing are the same thing. You are doing the right thing. Sending you good vibes!