Susan’s Story

by Debbie Erwin

 

My mother started falling four years ago. After several falls, several hospital visits, some requiring surgery to repair broken bones and extensive physical therapy, she was finally diagnosed in June 2011 with PSP. The previous doctor visits would leave us frustrated because no one had an answer as to what her illness was or a solution as to what treatment was available. After being diagnosed with PSP, this disease seems to fit all of her symptoms.

I am the middle daughter of six children. My younger sister, Beverly, and I have been her main caregivers. Other family members live out of town and come to visit her when they can, but Beverly and I have been here from the start and have witnessed it all first hand. She started off falling for no reason (most of them backwards). Her personality changed almost overnight and she became withdrawn, never wanting to participate in family gatherings or go on any kind of outing. Her speech became slurred and she quit watching television because she claimed the programs made no sense. Her appetite was almost nonexistent.

We tried to keep mother in her own home as long as possible, but eventually we had to make the decision to place her in an assisted living facility so that she could receive 24/7 care. It has been a big adjustment for her because, like so many people that suffer from this terrible disease, there is no warning. Your life style seems to change in the blink of an eye. She went from being an independent person, making all of her own decisions, a regular church member, living an active lifestyle, to one who now walks with a walker or gets about with the use of a wheelchair and is totally dependent on others to care for her. Needless to say, it has been a nightmare.

My mother is 81 and was always active. She tried to eat the right foods, walked every day, and never developed any bad habits that would harm her body. She was always our “rock”. I guess that’s why it’s so hard to see what this disease has done to her. A simple trip to the bathroom now requires assistance. Mother was always the one taking care of others. Preparing meals for friends who were sick and running errands for neighbors that didn’t drive a car. She has many friends and has touched many lives in one way or another. Her church friends have been a great comfort to her.

In reading some of the stories on this website I have found that there is something in each story that I can easily relate to. My sister and I have also experienced much of the same. We try to keep positive and try to keep our mother focused on getting better, but each daily visit we witness her slowly slipping away.

Talking to friends and co-workers has helped me and they have all been very supportive, but unless you have lived this, you can’t possibly understand what it’s like. A cure for this disease, or at least a treatment that could help people live with it, has got to be in the near future. I have faith in that. My sister and I do not plan on giving up and we encourage our sweet mother to continue to fight with us. I pray for strength in our fight and I pray for strength to all of the other families that have a loved one suffering from PSP.

I know that one day our mother will no longer have to suffer and will one day be at peace. She is the most precious person in the world to us and will always be in our hearts.