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
Tracie
Jersey
Written by
MissTR
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Relief and heartbreak run side by side and will do for some time to come.
Reading your post I see two loving daughters who gave their mum the best quality of life possible, trying to factor in your family lives as well. You did all you could for your mum and she would have felt safe in the knowledge that you were always there for her. You repaid in full the love and care she gave to you and your sister in your growing up years. Willing her to let go showed not only great courage but also your love for her.
Remember her now before she became ill, and may you and your sister find your peace in the coming weeks and months.
I read this to my sister, and we were both in tears. You have read the situation so well and your words are so kind. Thank you for taking the time to send me a message.
I’m so sorry for the loss of your mother. I understand how you can feel happy and sad knowing that she is know longer suffering from dreadful PSP. It’s good that you told her that it’s okay to let go, as hard as that is! She’s lucky to have had such wonderful support from you and your sister. I’m thinking of you during such difficult times.
Tracie, my heart goes out to you and your sister at this time. It is heartening to know she just slipped away. Take comfort that your Mum is now at peace. Love and hugs from Gloucestershire
I am so sorry to hear of the loss of your dear mum. My heart goes out to you as my mum is in the latter stages herself. It’s truly heartbreaking but I am pleased it was peaceful. It’s so important to remember the happy memories before this retched illness. Sending much love and hope knowing your mum is at peace helps a little.
Dear Tracie. My sincere condolences to you and your family for the loss of your Mum to this dreadful illness. I am glad that you were able to be with her and also very sad that the lockdown took away precious time that you could have had together. Time now to remember your Mum pre illness. Thinking of you and sending hugs 🤗♥️
Wow, what a great daughter, sounds like you have a very proud Mum, who has finally broke free from all this pain. Sending you loads of strength at this time xx
So sad. As a family we are trying to tell my husband to let go but don’t feel we are the right ones to do it . Are we at that stage yet? Are we wanting to hasten things ? We just don’t know .
It’s so difficult to know. We were definitely 100% at that stage. I know my mum was a fighter but I hoped that telling her it was ok, allowed her freedom. She was in situation that we hoped we would never have to see. You’ll know when it’s time x Sending you love and courage xxx
Truly sad but at the same time glad is such a strong statement and shows us all just how much your mum was loved by you both. To have the courage to openly say you are glad that she is no longer suffering is very very important and will help you through the grief of your loss as it was to us when we lost our dad last year under very similar late stage symptoms
If tears are diamonds we are all rich beyond our wildest dreams so let them flow and capture each one for it contains a treasured memory of your mum.
Take care of yourselves, stay safe, and take time out to sit and remember and be thankful for her life before PSP
So very sorry for your loss, may you find peace knowing your provided the best possible quality of life for her and that your mother is no longer suffering from this terrible illness.
Dear Tracie...I am so sorry you have lost your mom but thankful her passing was peaceful and that you take comfort in that..My sister is on this journey and is in LTC but the family have not been allowed to visit for 3 months and I am fearful she has deteriorated because of isolation...I will keep you in my thoughts Tracie..sending hugs!! Liz
It is a sad journey but I have found the strength of spirit of its victims to be beautiful and inspiring. Your mother sounds strong and loving. May she rest in peace.
I am so sorry for your loss. I lost my mom a year ago and her journey was over an extended number of years as well. You have so eloquently expressed our shared feelings: huge relief and immense sadness. Thank you, and take comfort in knowing your mom knew she was loved.
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Final stages
Advanced/end of life stage
End of a painful journey 
End stage of PSP
