We've been here in this awfulness so many times now between Kaye, Glenda , Jimi and Daddy, if you want to go way on back, you would think I couldn't be surprised or traumatized by bureaucracy with our healthcare system any more than I already have been, but hope springs eternal doesn't it?
So, I'm sure I have some of this whirlwind wrong, but I'll lay it down as best I can with my sore from sitting back and weary mind and broken heart.
Mom has been in a decline for years. At the time of Glenda's departure she was mostly sitting in her comfy chair for the most part of the day. She might wander into the kitchen now and again, but that was about it. On a good day, we could talk her into going out for something she loved- lobster, or coming to our house for a special occasion, but she wasn't content out of that chair for long.
The one thing my mom could not abide was to be alone, or to give up her cigarettes.
So, since we still work all day, it became an issue of there simply not being enough money or warm bodies to go around. Aunt Tish looked under every rock. So the first trauma for her was moving her into an assisted living apartment. We set it up as near to being a replica of comfy chair environment in a sunny window, with her favorite television evangelist crooning or preaching and all things favorite to enjoy as possible. A boost was being literally being steps from the nurse's station with endless opportunities for socializing. There was not a single day these three plus years that someone additional hasn't been there. I was her bath lady and pedicurist and only one two week vacation and the flu kept me away. She sadly, more firmly planted her self in that chair. While as you might guess, there is a no smoking policy, we had the technology of e-cigs, so the staff turned their head, and her number one job was to smoke the paint off of them.
I tell you people these are trying times. In my Mom's day, cigarettes were actually prescribed by doctors as a tonic for "nerves" and my mother bought that hook, line and sinker. She held onto the belief that them causing all sorts of diabolical health issues was baloney. Well, she is 90 after all. Still, her kidneys were in decline and she had COPD. So UTI's and pneumonia were constant.
Still, always blessings big and small, like finding a lady, Terri, who was willing to come whenever we called these past three and a half years.
Which brings us to six weeks ago when Mom started acting strange, the first indicator of a UTI. The primary health person sent an antibiotic, but this was round two of Klebsillia, which I knew from Kaye is hard to treat the second time around and it was completely ineffective. That was around her big birthday bash. Every time the primary treats it once, we are required to go to the specialist who prescribed an antibiotic that I knew from past experience would not work. It didn't. This all sounds simple, doesn't it? It isn't. Just this, two antibiotics, was endless phone calls for Aunt Tish. So, she wound up in the hospital with two more antibiotics, then sent home with still another one, so we're on number five now. UTI's in the elderly result in confusion and disorientation and she slipped out of her bed a couple of times. Not allowed, even if you are sick. Perhaps I'm wrong, but it seems to me that they are watching for any opportunity at assisted living to find a reason for their clients to be shipped to the nursing home, skilled care facility. These changes were directly related to her infection, but in order to keep her in her apartment, we again started twenty four hour watch. In addition to the UTI running rampant, pneumonia was back, as well now as a very painful bedsore due to her inactivity. So last Friday, when breathing was becoming labored, she asked to go to the hospital that she hates about more than anything in her current world. We had decided that we would let her call the shots, so when she did, Aunt Tish took her.
Things went down hill all day until they called us in and said she was in a downhill spiral to the end. Ahem, they don't know my mother very well. After several hours of her begging Jesus to come and get her, prayers and all her favorite hymns, she turned the corner, well, her stats became stable.
We reached out to all our sources- a nurse friend of Aunt Tish, a doctor friend of mine and a compassionate heart specialist who all told us to advise the powers that be to comfort her in all respects and otherwise leave her alone.
It would take me all day to write the kind of craziness, heartache, miscommunication, questioning, and fearing that has been in our hearts and heads this past week as we've stood over her, 24/7 trying to make sense of the nonsense of healthcare. My sister's job of many years has been management, so she knows what she is doing and she does it tenaciously. This current system is not manageable. Even when you've said no to their precious dollars being used to continue to treat her, it doesn't make any difference. So for days Aunt Tish called, demanded, pleaded, okay begged for some grace.
We were told on Thursday, the words we longed to hear, that they would keep her at the hospital till the end. The person said she promised.
Meanwhile, they mostly had her comfortable, at least until the angina attacks, which by all accounts were horrible for her and those watching.
I took next week off work because I am at the point that I do not believe one thing they say and decided if they kicked her out, I would bring her home.
From Thursday morning till Friday, they did a complete about face and said she had to go. Of course, we couldn't take her back to her apartment because she'd been given her exit papers. I was advised that only God knew when she'd be getting her flight plan and it may be way longer than we were originally told. I had been busy trying to find some affordable and reliable help for my work hours when I needed to go back to work and had failed. So, we go to the only place open to us. A room at the end of long hall where there are no other patients and my mother unable to even press a call button.
My mother worked like a dog all her life and had a decent retirement, in addition to Veteran's benefits. A skilled nursing facility- interesting term- absorbs all but $90 a month of her income.
So, that's where we are. The seventh circle of Hell, and that is where I'll be spending my days this next week. After that, I do not know. Hope still exists in some very tiny place, hope that this facility will surprise me with attentive care. I guess we're about to find out. Lord help.
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