I write this post with frustration. My poor Mum with PSP, diagnosed March 2021 has rapidly declined since Christmas. Mum has been in a nursing home since March 2023, and up until end of 2023 was still using her frame, and could just about manage to whisper the odd word. Now she can no longer use her frame and is unable to communicate at all. She can't even manage a thumbs up or down. I feel guilty that I cannot understand her. I know it's not about me, and I can only begin to imagine how she must be feeling. She cries often now, but I think this is an outlet for the frustration she feels.
There are three other residents with PSP in Mum's nursing home. You would think that would make them experts, but I'm really not happy with the place. I'm even more concerned now that she is unable to communicate. I can't even consider moving her to another home as she doesn't cope with change well. Also, there are not that many options for nursing homes.
I do apologise for the rant, but I feel so bad for her 😟
Written by
GeorgeMMXVI
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Hi, I'm so sorry to hear this. I'm not sure I can offer much help. My husband is at home and whilst he has many issues he is still able to speak but I do understand that the care needed is specialised and that's so hard to find both in nursing homes and carers coming into the home. We have a brilliant guy who fortunately does the most hours has learnt about psp and supports with both practical help but also in the way he engages with, communicates, does activities and involves my husband, the others who come - well to be honest I can't stand them- good at practical stuff but don't speak!!! So that's not helpful when someone's apathy is high and communication skills are compromised!!!! But just some thoughts have you tried ringing the pspa helpline and see what they may suggest in terms or training and awareness for the nursing home staff or do you have a specialist nurse who may be able to go in and talk to them about psp and how they can best help, communicate and engage with your mum and others, we have a neuro nurse and she's offered to do this. Another thought do you know the families of the other psp residents, could you meet up to discuss, maybe share ideas, perhaps make a united front on what you need from the home and staff. It's so hard i know...trying to balance keeping someone with psp safe and wanting them to have more than just perfunctory care in a world where so few others know little about psp or are focused on staffing hours, covering shifts and doing the basics. I'm sorry I can't offer more help and I hope others respond who can. Take care and remember you are doing all you can xxxx
Thank you Millidog, I have spoken to some of the other residents families. We don't feel that the individuals needs are communicated to all of the staff. I shall keep fighting the fight as I'm Mums voice now xx
Am really sorry in regards to what you are going through, it must be extremely hard. That is without taking into consideration the emotional and mental suffering of yourself. I am no expert or anything and forgive for saying this but spend as much time as you can with her please!!! I have only logged back into this after years and if anything to date one regret I still have and still have silent sobs over in private, is time. I feel soo bad for not having that time.
You dear mother is going to be very frustrated, I could see it my late father eyes and feel it in his grip. I hope you are ok as this illness wreaks havoc on us too. Am really sorry if I have said anything out of place or such. Your mother is in my thoughts and prayers.
Hi, you may have already tried this but just incase it helps; place a couple of your fingers in her hand and ask her to squeeze them, if she can do that then you can ask her direct questions as long as there is only one answer, ie are you in pain, squeeze my finger for yes.
Everything to do with the progression is heartbreaking. My husband has past the stage of being able to thumbs up or down and as Zeracheil suggests we use ‘squeeze my hand’ for yes. He often just stares at me and it’s hard to guess what the answer is even after 41 years of marriage.
I was interested to hear the nursing home has other PSP residents and like Millidogs idea about reaching out to their relatives and approach the staff as a group to suggest better practices. It’s a better option than moving as all changes are unsettling.
We are told endlessly to lose the guilt but it’s very hard to not feel helpless in the face of this relentless progression. I feel helpless and sad all the time too and my husband is at home with me. Take care xx
I completely understand your frustrations. I organised training from PSPA for mum's nursing home but it made no difference. You are really fortunate that there are other residents with PSP. I'd really encourage you to make contact with their families as others have suggested. I found it so therapeutic sharing frustrations with another daughter of a resident at mum's home even though her situation was quite different. Don't be afraid to fight and complain. Have you tried applying for CHC?
The CHC is a whole other can of worms. I did sign a checklist in August, then when I chased up the progress with the home manager she didn't seem to know about it. After some going back and forth, the area manager approached me. She told me I was unlikely to secure funding and proceeded to ask if Mum owned a property! I came away on that day feeling upset and angry.
It’s not the home manager who makes that decision it’s the CHC NhS who do the assessment and make the decision. The home manager should be supporting you.
The home Manager suggested filling out the CHC checklist for submission. I’ve now filled out this checklist three times as the Home keeps misplacing the form.
Im so.sorry that does sound like a very rapid deterioration all of a sudden, i imagine it is quite a shock. Has any kind of infection been ruled out as contributing to this ie a UTI?
Like someone else mentioned is there
any part of the body your mum can control? We found the speech team were able to guide us to help mum use a letter board and her right foot/toes as the indicator. It was such a relief to maintain communication.
Reading your message is like reading a message I would write for my poor Mum. She is in a nursing home not able to communicate, her body has seized up and she is struggling with swallowing/choking. It is so hard leaving her when she looks scared and confused it breaks my heart but trying to be brave.
The nursing home she is in was for respite so Social Services are trying to find a permanent home. I have tried looking for one that would know more about PSP but so hard, they all seem to concentrate on dementia.
I keep being told the staff are doing their best and that she is safe but when you can never find anyone and when you do they don’t speak good English, it is frustrating.
I feel your pain but keep on being there. I am trying to train myself not to feel guilty (not sure how) and spend as much time with her as I can.
Dear George, I am so sorry for your situation, Please spend as much time as you can with your mother, unfortunately I have just lost my wife with this terrible disease, and at the end she could neither talk nor even use her hands or her eyes but tears rolled down her face and you could see the terror in her eyes, but being unable to help in any way was the most distressing for me, so please spend as much time with her as you can, as I found the drop from being capable of some form of communication to the last 24 hours was like falling off a cliff. I am so angry with the medicall experts in this county who do not even recognise or know of this terrible disease.
Feeling the same frustrations with my mum who has been on a similar journey. She's also in a nursing home, she now cant indicate a thumbs up or down. She been on the highest anti depressants possible fornthe last 6 months which has limited the crying and she's more settled from that perspective. Maybe this would help your mum.
Sending love to you all it's really traumatic to watch so be kind to yourself. All of us are caught up in this journey and it deeply impacts us.
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