I didn't pay much attention when the good people found other employment and that the aides who were left became less and less efficient and more and more strange. I just didn't care anymore. All my attention was on my beautiful girl and once she was gone, on nothing at all. Her daddy took care of my extra needs and has, to this day, visited me daily when he's able. We have a caring mutual friendship and he has made a real difference in my choice to continue living. (His wife has been very patient and generous and, though I wouldn't say we were friends, I appreciate these qualities in her.)
So I had his visits to look forward to. Otherwise, my future was a blank wall that remained empty. My room was lightless. I called it "the cave."
Then a pinpoint of light appeared. On October 16, 2011, I was told that my wound was almost completely healed and I could start getting up in a wheelchair. All they had to do was order one for me and, when it arrived, I could get out of bed. Joy!
Somewhere in there, the wound care nurses disappeared. One was let go and the other moved on. The regular nurses were supposed to take over the care of my wound. They tried, but they really didn't have the skill. But I had the promise of getting up in a wheelchair and, though I was dismayed by the lack of skilled wound care on-site, it didn't worry me too much.
Every week I asked when my wheelchair was coming and I was either told, "soon" or "I dunno." This went on for ten weeks. My enthusiasm waned. That pinpoint of light started flickering out.
It was extinguished altogether when my doctor, whom I liked but almost never saw, examined my wound around mid-December. My wound, which had been nearly healed, was back to being a stage 4 wound, plus I had developed another stage 4 wound near it.
They transferred me back to the specialty hospital for proper wound care. I didn't care. I was busy trying not to fall apart because it was the first Christmas without Lyra. I didn't bother with decorations. I was empty again, except for despair. Even the view outside my window reflected my mood. All I could see through it was a close-up of the brick wall of the building next door. Another cave.
Eventually I had more plastic surgery on the original wound and the second wound was allowed to heal naturally. I contacted a lawyer to look into suing the nursing home for neglect, but the expert she was required to consult for approval of the suit wouldn't sign off on it. Something about how paraplegics commonly get bedsores. Sounded a lot to me like the insurance companies had somebody in their pockets, but there was nothing else I could do.
I couldn't stay in the specialty hospital forever and I couldn't and wouldn't go back to the home I had been in, so we found another place, a home where I still live, and I was transferred there. It is a good place, except for a few problems. I'm currently going through the same "we're ordering you a wheelchair... Should be here soon... Dunno when it'll arrive" nonsense I went through at the other place but I am far different, emotionally, than I was then. I'm a much squeakier and louder wheel now, and I have the phone number of my ombudsman.
I had been asking to see a therapist since the beginning. At the original nursing home I was told I could go off-site to see someone but I couldn't see a therapist at the nursing home. That turned out to be a lie, since state law here requires a nursing home to pay for a therapist if one is requested. They just didn't want to pay for one. But I didn't know that and, since it was not possible for me to get out of bed, there was nothing I could do. So I went through my losses by myself and was doing a dismal job of handling them.
Imagine my surprise when the administrator at my new home said they would provide a therapist to visit with me in my room. It took 3 years or so, but asking finally paid off. So one day a tall, white-haired man with a beard came in and introduced himself as my new counselor, Mike. He sat down and we began talking, to assess whether or not I needed him. I'm sure it didn't take him long to realize what a mess I was. I was at my wit's end, just waiting and hoping to die.
But now, I thought, maybe there was the faintest glimmer of light. I wasn't alone anymore with the despair that friends and family couldn't do anything about. Now I had a trained professional to help. I was so deep into my hole that hope was just an echo so I was dubious. But I thought I'd see what he was all about. We arranged for him to visit once a week. And so my heart began, tentatively, to heal.
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