I am happy and sad to report that my poor mother passed away on Saturday. She was officially diagnosed with PSP in 2016 after a fall which put her in hospital and then they investigated further. We believe she started with the early signs in 2013 at least. She previously lived alone so after a diagnosis she was put in a care home.
My sister and I work part time so we were fortunate to be able to take her out a lot, in her wheelchair. But that could be stressful in itself as with both have young children.
She survived lockdown and we had restarted visits in the gardens, but in early May she had two big seizures about 4 days apart which put her into hospital for a few days. From then she refused to eat and lost a lot of weight, despite a previously good appetite. I think her jaw and swallowing mechanism had changed. She had a PEG already in place so all feeding changed to the PEG. At that point they decided not to take her outside anymore, and we were allowed into her room to visit. Then two weeks ago she started with quite strong spasms in her arms and legs. Thanks to advice on here, we quickly got medication to help with that. A week later she became bed bound. We spent hours with her each day. She was largely unresponsive but her eyes stayed open and didn’t blink. She started to fade a little more each day. After 10 days she slipped away peacefully.
The last four / five years have not been easy, but as a family we have been able to give mum a valuable quality of life. I feel that lockdown took that away and sped up the final stage. It broke my heart to see her in the last ten days and I told her every night to try and let go and repeating how grateful we were to her and how much we loved her but willed her on her way.
I have not been very active in this forum but I have found it to be a huge support. Reading other people experiences, asking for advice when needed - just knowing that we were not alone in our situation with this rare illness. I hope they find some answers in the research of PSP. Huge thanks to other contributors and I send my love to others going through the journey. My relief is huge but my sadness is immense.
RIP Mum x