As I read the posts daily I can identify with each of you. My mother was diagnosed with PSP in December of 2008. She was cared for in assisted living homes until July 01, 2012, when I brought her home to live with my husband and I. She has progressed through the stages and is currently settling into stage four. This leaves her with no ability to communicate, walk, eat independently, etc. I find myself simply trying to stay one step ahead of the symptoms. She has had TIA's, horrific falls, etc. Her current physical symptoms include rigidity on her left side, her left arm completely atrophied to her chest, clasped hands, an indwelling catheter with chronic UTI's, severe headaches, changes in her eyes (the left moreso than the right), either spaghetti legs or rigidity, difficulty sleeping at night... I'm sure the list is similar to many of your lists. I have a woman (who is a saint) come in the evenings to get her ready and into bed and to give me a break.
I am ordering a Rifton Tram lift today to assist in transferring. This task has become so difficult that it is now a safety issue. I am hopeful that it will allow us to get her up and from point A to B with minimal difficulty. Since mom weighs 50 pounds more than both her caregivers it is daunting to manipulate stiff arms, legs, etc. from one point to the other. Although the lift is expensive it is the only way to keep her in my home. My intent is to keep her here until she passes away.
On our last trip to the physician we got a prescription for morphene which has helped with the severe headaches. I was beside myself as I did not have anything to treat the pain. I felt completely inept. She also prescribed Baclofen (a muscle relaxant) which has significantly improved mom's ability to swallow. That was a gift that I was not expecting.
I want to thank each of you for sharing your experiences and ideas. This disease has many facets so trying to treat the symptoms gets more difficult as each week passes. I continue to try to deal with the disease proactively and am so frustrated when I am not able to help her.
Strength to you all!