Hi Harriet. I'm not sure exactly what you're asking for, but I'll offer what I can.
I've never looked back on those years with Mom with regret for anything, except the few times (and it was only a few) that I couldn't handle a situation, and was short with her. But I realized it wasn't her, it was an imbalance in me, and I quickly got it under control. We had fairly quickly switched roles, with her becoming the child, and I the mother. And as I would have fought to the death for my real children, I felt the same with her.
I was told by someone that I should go to this something Resources, and sign up for respite care, and I did. But when they told me my income, as well as Mom's would be used to pay for that respite care, I left. In my last year with her, a worker from this place came by to talk to me, and I told him about that, and he said that was wrong. So for the last eight months I had her with me, I had four hours a month when I could get out and think about just me.
I don't know if this has changed yet, but I was also told that if I was taking care of a stranger, I could be getting $1,000 a month, but since it was a relative, I wouldn't get anything.
Our doctor was quick to tell me what a great thing I was doing, but that I really needed to take care of me too. Yet at the end, when the hospital bed I'd gotten after Mom got up and ended up sitting on the cold floor for I don't know how long before I woke up at seven and found her, was going to be taken away unless the doctor wrote another prescription for it, the doctor's response was that maybe I should put a mattress on the floor for Mom. She couldn't get up off the floor, even with help. And in our last six months together, when I didn't dare leave Mom alone for a minute unless she was asleep or eating, I'd mentioned something to the doctor about the growing cost of caring for Mom, and the doctor's response was that if we needed money, maybe I should get a job.
The ladies that came to sit with Mom on those four hours of respite were great. She was always laughing when I got home, and would talk about them and how nice they were for quite awhile after they left.
In the nursing home, I saw the way those caring for the patients viewed them. There were the special ones I called Angels because they were so caring and careful always. But for the rest, I felt like they needed a reminder that one day they would find themselves at that same place on the road of life, and should consider how they'd feel if they were being treated as they were treating these elderly people who could no longer take care of themselves.
So I put together a collage of Mom's life, with a big picture of her at around the age most of them were, and surrounded it with smaller pictures of her at all ages. And I hung it over her bed. Beside it I put a brief summary of her life, which was pretty impressive. And I also put the poem I'd written as a reminder to myself when I'd begun the journey with Mom, of what she was going through, and how she'd want to be treated. It all made quite an impact on the whole staff. Everyone there must have gone in to check it all out.
I'd like to see a change in how so many people still view dementia even now as "crazy." I know people are becoming more aware because A.D. looms as a possibility in more and more people's lives every day.
There are the good commercials on television, such as the one of mother and daughter getting ready to go somewhere, and the mother appears like any other elderly mother, only somewhat confused. This commercial shows that people with dementia still look and act like grandma or grandpa.
Then there's the bad, like the bleach commercial that makes me want to scream, where the grandmother is dancing two raw chickens around on the coffee table while the grandchildren sit on the couch laughing, and the daughter walks through the door, and say's in a resigned voice, "Hello, Mother." And then the bleach is shown. I did write to the company about this and another commercial they've been airing that are so offensive, and one seems to have been pulled, but unfortunately this one is still on.
Hope all this helps a little.