My mum Stella is 82 and has CBD I think she is in the later stages of the disease. But I’m not really sure what late stages are!
She was finally diagnosed in 2021 and now lives in a care home (who are brilliant with her. And look after her needs very well)
My dad cared for her at home for a few years until he could not manage her progresive needs any longer. He is not in the best of health himself at 84. He visits mum most days
My mum can barely speak only responding with ‘yes and no’ It t is very tricky for her to communicate now. She stares blankly a lot of the time. She has to be fed as her arms are now stiff and she is unable to move any of her body herself. she is incontinent and totally immobile
I have joined this site to share my experiences so far, and to ask for a little bit of help for us as a family of what to expect for the final stages of this disease. I just need people to chat to who are in a similar situation
Thanks
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Jiggyjo
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Hi Jiggyjo, what you describe is a very similar situation for my Mum who had PSP.
Nursing home is very good and will hoist Mum up every day but speech is quiet and difficult to understand and her eyesight is failing her. She has to be fed most of the time as her arms are very stiff.
As for last stages, she is described as having end of life care and we have palliative nurse who sees her every month or so but we don’t know how long this (stage) will go on for that is why these diseases are so awful.
Whilst it is distressing to see, we have to make the most of the time we have with them 💔
Hi. Thank you for your reply. I didn’t know about palliative nurses that could be involved. Maybe I will enquire about this.
Yes it can be quite distressing to see your loved one with the later stages. But as you say “make the most of the time we have left with them.” It was mums birthday a few days ago. I opened all her cards for her and read all the messages. I didn’t get much back from her, a few smiles and a few ‘yeses’ It was quite a good visit. Some visits are not so good. Mum sometimes cry’s but the cry is more like a howl cry. Has anybody else experienced this type of cry? It’s quite upsetting when you first hear it. Something I didn’t know about. She is being slightly sedated now to calm her. All new experiences for us
Hi Jiggyjo - I completely understand. Welcome to this forum - you will find loads of support here from people who get it. My mum was in a nursing home for 4 years with CBD, and died last year at 89. She spent about two years in the state you describe. I successfully applied for CHC funding but it was quite a fight. I’ve recorded info on that on this forum. One of the things it achieved though was getting more input from the various care professionals because the nursing home had not been involving them despite my requests. The most important, which I wish I had been able to sort earlier, was the palliative care team. They had a much better understanding of what was happening and prescribed muscle relaxants and pain relief as towards the end her muscle contractions became much stronger and distorted her legs and feet badly which she found painful (having previously not found her arm and body distortion painful). I recorded details of her last few weeks elsewhere on this forum too. You can see my posts if you click on my name.
Hi messier. Thanks for your reply and information. I did click your name and looks like there is lots to read and lots to learn. So glad I joined this forum. Thanks again
I recently lost my Husband 💔 everyone is different I would not say Karol was at the end of life. He was in later stages of the illness but still looked so well but aspiration pneumonia which took him. Enjoy your time with your mum 💜
My husband died last year. The disease crept up on him . He never got a specific diagnosis but his situation in his last 2 years was very similar to your mum's. But his cognitive decline was much less than his physical state which made it all the more distressing. He watched TV and clearly responded intellectually and emotionally. I ABSOLUTELY agree with Messier - get the palliative services involved. We didn't know we could ask the local hospice for support. Alan was in a nursing home for his last six months. I offered them lots of info and contact with the MSA nurse - response - I don't suppose she can tell us anything we don't know already. It was not a good death - UTI left untreated till too late. My thoughts are with you
Although PSP-RS and PSP-CBD have variations in their disease profile and even the fact that the symptoms take on an erratic presence in either of these two variants of the PSP disease, I have a document that can give a pretty good idea about the phase in which the patient is.
By internal email I send you the symptoms for the last 6 months.
The document describes the evolution of symptoms throughout the disease and is too heavy to copy into the chat. If anyone wants to know it in its entirety, I will need an email address.
my brother is 53, he is also as you described your mum. He is now in a nursing home. Has no functional mobility. Cries to , like the howling described. Also cries out in pain.
It’s awful to watch CBD takeover his body. We have Marie curie nurse involved and it’s great, but I do have to intervene with care staff to get them to call her to increase his meds.
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