I came upon an article tonight that left me feeling and vividly remembering the worst days of the awful, painful journey with my mother. I have not worked through the decisions I feel most guilty about and tonight it was painfully obvious. I am enormously grateful for this forum; I knew I needed to unburden myself with people I know can understand, and I thought you all. And while there is plenty of blame to go around, I do need to focus on my own troubling feelings that have not lessened even after two years.
My sister and I knew little about dementia when my mother first went to the rehab in her senior living community following two falls, one in which she sustained a fairly small but very painful spinal fracture that had not shown up on the x-ray. My sister and I fought with the docs almost daily to order an MRI, and to adequately medicate her pain. If I could do it all over again, I would have screamed bloody murder, and had her transferred out of there (she had to pay $500 daily for the privilege of being there as it was not a Medicare funded facility). We were swayed by compelling advice to have her stay and be near her doctor at the health center. She was a part of these decisions, and we respected her wishes, though she clearly depended on our guidance.
It was abysmal for her. We finally snuck her some vicodin, as tramadol- and tylenol- was all they would prescribe- even after the MRI confirmed the fracture. We were so naive about so many things, like that we should have been there with her a lot more to ensure she was properly cared for. In addition, decision-making between my sister and me was very problematic. We had a terrible relationship, largely due to her explosivity. We could never resolve things like healthy people because she couldn't or wouldn't or didn't have the interpersonal skills, and because our family dynamic never supported harmonious relationships among siblings. I am the eldest of 3, and I turn 60 tomorrow. My sister is 55. We also have a brother, 59, who has given next to nothing to our mother, or to us, since her decline.
We were due to have a care plan meeting, in her room, with a treatment team and an administrator or two. They stand in a semi-circle several feet from the bed- and the only place for the patient is on or in the bed. It is intrusive and disrespectful and puts the patient in very unequal position.
We were clear we did not want our mother left in the wheelchair for more than an hour, including when she finished her breakfast. PT agreed with this. On their way to the meeting in her room, every single one of those treatment team members passed by my mother, and once assembled in her room, wondered why she wasn't there. She could not go anywhere without assistance, so where could she be? I found her sitting at the breakfast table, finished with her meal, calling for help to get her back to her room to stretch out on the bed. I could hardly believe no one saw her there, or was responsible for getting her to her own meeting. Poor Mom. A day or so later she would throw a plate in order to get someone's attention and help her out of the wheelchair and onto a recliner or the bed.
I haven't gotten to the events I feel worst about, but I've taken up enough of your time for now. I'm hoping others don't mind the length. I don't know that I have told the story in detail, and it helps.