Our father is 66 years old and has been diagnosed with PSP. Dad has 4 children - a son and 3 daughters. We first noticed dad was shuffling his feet when he walked about 8 years ago. Our youngest sister is a pediatric nurse and she is the one that noticed. Like most stories of PSP I hear, he was diagnosed with Parkinson's to begin with. We kept taking him to various neurologists and they always said it was Parkinson's. As dad got worse very quickly, we began to do research on Parkinson's and nothing matched. There were too many inconsistencies and we kept trying new doctors. All this was very difficult financially as he had no insurance. Finally we took him to KU Med Center and the neurologist took one look at dad and said I'm positive it is PSP. We came home wondering what is PSP? Did extensive reading / research and it was a perfect match for his symptoms. By this time dad was not doing well at all. He was falling a lot, vision was going fast, speech was becoming hard to understand at times and his gait was becoming very unsteady.
Though our youngest sister (the pediatric nurse) was living with him at the time, she had 2 toddlers, a spouse and was working so she was not there for him 24 / 7. We pondered what to do to help him as we were worried about him when he was alone part of the time. He had already fallen several times - really hurting himself. Such as falling and hitting his head on the hearth and requiring stitches, another time he pulled a tall filing cabinet over and barely missed crushing himself - he was able to crawl to the phone and called me on my cell phone. Then the morning of October 29, 2003 he fell in the kitchen and broke his hip while trying to cook himself eggs for breakfast. He required surgery and a stay in the nursing home was necessary for his medical care, healing and physical therapy. He never walked again and has been in a wheel chair for the past 2 years. We knew at that time that he was not going home. We all had children/families and jobs to attend to and our homes had stairs - we didn't see a way to make it work for him in our homes. We made the difficult decision to leave him in the home so he could receive around the clock care.
We were told by the social worker at the home that we would need to be vigilant and very active in visits and contacts with the nursing home if we wanted dad to receive better than average good care there. My brother and I set up a schedule so that one of the 2 of us would visit every single day. My older sister lives in Alabama and she comes to visit every 6 months and my younger sister visits when time permits. We have taken every holiday family meal to the home to be with dad as neither my brother nor I have a home that would accommodate a wheel chair and his bathroom needs. We have Thanksgiving, Christmas, Easter, etc. at the nursing home. The nursing home has worked out fairly well but we do have to stay on top of things. Dad has also "told on them" more than once. For example one day they dressed him without underwear, when he asked for underwear they informed him that he did not have any. He did not like it and called my brother. Steve had to go over and ask them to please dress him correctly and find out why he did not have any as we always buy him what he needs and plenty of it - it was in the laundry room, clean and in a stack but not in his room so the aid did not dress him in any. It seems so inconsequential to them I'm sure, but to dad he was uncomfortable and to us it was a matter of dignity. Most of the workers are very nice and caring but there will always be a few who do not care, are tired that day, are having a bad day, etc. Dad will even list off the ones that care and are helpful and those who just do the minimum. Last Christmas Dad asked us to send flowers to a few who show special care.
The things my dad enjoys are drives - we load him up and take him for drives. He really enjoys getting out of the home for an hour or so. There is a park within a couple of blocks of the nursing home and we often push him up there. And of course he really enjoys having his grandchildren around. When he was still able to eat solid food we often took him special meals to eat with him about once a week. He also really likes ice-cream so we take him ice-cream a lot too. The other thing he enjoys is when his brother and sisters write to him and we read the letters to him - they are in Illinois and Tennessee so do not visit. I came across his old high school albums while cleaning out the house and took those over to him and we went through those, he really enjoyed me reading the writings in them - where classmates wrote personal things to him. We also take him outside on the patio and let him use our cell phone to make long distance calls to family and friends from back home in IL.
At this time our father has been put on Hospice care and is considered late stage PSP. We do not know how much longer he will be with us but we continue to try to help him enjoy what he can.
Lisa Wendell (author of this memorial),