Despite the wonderful advances due to the amantadine, mom is once more losing her balance and is very shaky sitting and standing; she has tremors while trying to eat again. We knew that the good effects of amantadine might be only temporary, but we didn't even get the usual six months.
But it's the dementia that's taken over. The doctor who saw mom, the PSP guru in New Jersey, said that Mom did have a lot of frontal lobe symptoms for a PSP patient. Sadly, these seem seem to be coming to the foreground. She's increasingly forgetful and confused; I sent flowers to the AL (assisted living, for you newbies) home, and she asked the proprietor, wonderingly, "Who sent me flowers?" She's unable to dress herself any more without prompting, nor to bathe.
As I'm the only person who has ever sent her flowers, I'm thinking she may not, in fact, have remembered at that moment that she had a family. My dad thinks that in a few months this will be so, and I told him I sure as hell hoped so. I mean, she's happy, she's caring and well cared for, she enjoys food and game shows and walks and books and Swiffering, all the while forgetting that she's terminally ill and a prisoner in someone else's establishment - what more could we ask than that she forget?
Maybe just a glimmer of hope for you..my dad never forgot his family. Right to the end, he knew who we were.
ReplyDeleteHe called my son Michael "Edmund" once(I don't know where that name came from) and then when I said "Dad you called Mikey 'Edmund". He laughed hard, finding it amusing. Other than that, he knew who we were.
Another time, my Uncle Steve, his youngest brother who lived with us, was taken to the hospital by Ambulance and died shortly after. A few months later, my dad asked me to go with him to the hospital to get Uncle Steve. My heart broke to see the look on his face when I had to break the news a second time that Uncle Steve had died. But then recognition took over and thankfully, he remembered.
So although his dementia worsened, he always recognized my mom, sister, and his grandchildren.
He would just mix things up and get the time frames confused. Once he went out for a walk and didn't get very far before he fell in the street. A neighbor brought him inside. We asked him where he was going. He said to Water St to check on the house I was building. Well, Water Street was the street where he worked for many years, and the house I was building was next to his and had been built 20yrs before(he had done the surveying for us among other things).
So to me it seemed that he had all the memories but it was though it got all scrambled up.
The human brain is a strange and complicated thing. He was so brilliant..it was heartbreaking to see him deteriorate but you know, I never saw him get depressed and neither did his doctor. He had about a year at the beginning of his illness that he would become angry easily and this was not the personality of my sweet, gentle father. I think when he realized what was happening to him, he accepted it and became himself again.
I'm sorry if I'm getting too long here. When my dad got sick, I had never heard of PSP, and never had anyone to compare notes with or commiserate with. So I'm trying to be as helpful to you as I can.
Stay well, Bernadette