mum seems to be deteriorating daily over the last month. Her left arm is rigid and stays by her side, her posture is slumped over and tilted to the right, her speech has more or less gone. She sometimes has an excess of saliva but still appears to be able to swallow. This week I thought she looked as if one side of her mouth was dropping ( like a t.i.a.) but staff think it’s just that the right side of her top lip is swollen.
She is in pain from muscle spasms and asked me ( can only understand 3 or 4 words in an hour long visit) “what’s next….PSP?” I couldn’t answer her …
I’m trying to stay as positive as I can when I visit but then crumple in tears when I get to my car with the sheer heartbreak and cruelty of PSP.
So… what is next and how can I best help my beautiful mum? (We think she had signs in late 2020 , has been in a care home for over 2 years now )
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Girvangal
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In terms of palliative care, if your Mum is in a nursing home they will probably already being doing this. Your Mum will have been on palliative since the day she was diagnosed.
Does she have a Parkinson’s nurse or a neurologists who might be able to recommend some drugs to help with the pain of her arm? My Mum’s neurologist has just recommended some different drugs as pain killer don’t work really.
My Mum has PSP and CBD but she does have dropping on the left hand side of her face, which is the same side as all her dystonia (twisting).
I think the best thing you can probably do, is visit her as often as you can and be with her. I find it so hard but Mum does look forward to me coming as she has previously told the staff even though I sometimes just sit in silence with her.
Yes! Thankyou… that’s what I do. Visit her as often as I can and make myself useful to her. Either doing things in her room or advocating for her with the care home staff. X
It’s so hard to know what the right thing to do is, but being there and advocating for your Mum is the right thing you can do. If that’s all you can do, today I did it even though I could only get five words out of her. X
HiI feel for you. My mum (CBD) was in a nursing home for four years. I kept thinking that she surely didn't have much longer and yet her body kept going. The end of life stage for her started quite noticeably with a sudden episode where she protested about being got up out of bed (previously she hated being in bed as uncomfortable) and completely lost cognitive function - she just stared at her door and saying the number on it. After a few days she improved but was not the same and within weeks lost the ability to swallow and we agreed to put her on end of life care with syringe driver etc. I had to ask the nursing home to bring the palliative care team in before this and they were much more useful than the care home in assessing her status so I recommend that.
Thankyou for your reply and I’m so sorry about your mum. I too keep wondering just how long her wee body can keep going.
We have had previous meetings with hospice staff and I will not hesitate to call on them. From what you’ve said it’s maybe going to be obvious just when that should be.
Thankyou again. It’s so comforting to feel the support from others on here🩷
My husband is at home and quite early on our Gp referred my husband to Palliative Care (long term illness, it’s not end of life care), as she was uncertain about medication for PSP. The ‘visits’ were often phone check ins but the Dr also visited. They organised and got CHC Funding, we are now due a review (gulp) but they are going to be there. We have been appointed a new nurse who has recently visited and is giving advice on oral health for example.
I know support really varies from county to county her in Uk but it really is good to have been referred to Palliative Care.
In your case Girvangal I would check with the care home staff to see if this referral has been made.
my heart goes out to you. My dad with late stage CBD is in a very similar state, it’s cruel. He is still being nursed at home with my mum and a team of carers. Do you have a palliative consultant? My dad has a visit every month from the consultant at queens court who are brilliant.
in terms of pain management, my parents are of the generation they think paracetamol is the solution to everything. He has neuropathic pain in his right arm / left shoulder that I know gives him a lot of pain and difficulty sleeping. I sat with the advanced nurse practitioner for a UTI issue as I needed to help her with his speech - she asked him about his arm pain / floating arm and he said it was constantly 7 out of 10. I found it very upsetting how he has been in a lot of pain for so long.
Neuropathic pain needs the right medication … my dad has been very resistant towards medication. Make sure you get the GP engaged to try and make your mum a little more comfortable.
In terms of timelines like you we just don’t know. I’m amazed my dad is still here🙏
Thankyou so much for your reply. Indeed it is the unknown nature of PSP that is so scary. It seems to me unbelievable how many people seem to last so long whilst suffering the ravages of this cruel disease.
Thankyou for all your info re pain management too.
I will be meeting with nurses and go soon to discuss the way forward to best supporting my lovely mum x
Firstly sending you and your mum lots of love whilst navigating the horrible illness. I would speak to the home about an advanced care plan . They usually have nurses that specialise in this and they will go over what happens etc. Some nurses in the home are usually pallative care nurses.
Unfortunately due to the unpredictable illness your mum could take steps backwards then recover slightly.
My mum was diagnosed in Jan 2020 and ended up in an end of life care home 3 years ago. She was expected to last 8 weeks at most and finally found peace in August this year.
Everyone is different but she was extremely determined to stick around. She also was suffering some dementia and so the enormity of her situation at times passed her by.
A meeting with the home is the best way forward and a call to neurologist to have a specialist nurse assigned if there's not one already.
Thankyou so much for your informative and supportive reply!
I have been in touch with the hospice and mum has had a couple of visits from them. After a chat with the head nurse at her home , it seems that she is indeed well informed as to when mum will need a different level of care.
I’m so sorry about your mum… I know the stress you would have been coping with. It must be comforting to know that she has found peace at last. X
My husband is cared for at home. He has pain in his arms and hands which I can often relieve for him through doing the exercises that he was given by the neuro physiotherapist. They are simple to do - stroke his palms first to stimulate the nerves and relax the hands; rub inbetween fingers and thumbs to separate them; slightly separate them by stretching each one; twisting the wrists clockwise/anti-clockwise and then back and forth; bending armas up and down and backwards and forwards as much as they will go.
My husband spends all day sitting in his bespoke wheelchair (NHS provided)which has a side support that slots in and stops him sliding over to the side
He also has Botox injections every 3 to 4 months (done by the consultant neurologist at the Walton Centre) which help maintain his mobility in his arms
Hi Girvangal, I spoke to the home and asked for the physio to give my mum hand massages daily as she is unable to use the other daily activities there and her hand is constantly clenched and it will just shorten her nerves and must end up painful.
I believe she has had PSP undiagnosed for a couple of years so in toll most likely 4 years.
She finds it very hard to keep her eyes open these days and is wheelchair or bed ridden.
Her mouth muscles have tightened and her mouth forms an O most of the time and she is very self conscious of this and her random bouts of laughter.
Conversation getting short and mainly repeating what I say.
My heart breaks for her and I am exhausted mentally.
'My heart breaks for her and I am exhausted mentally.'
Please don't worry. If you are her carer, then it will negatively affect your caring efficiency that is so urgent for your mom.
What did the physio say when you asked him/her .... to give my mum hand massages daily as she is unable to use.....?
Further, you have mentioned...her mouth forms an O most of the time and she....What solutions have the doctors including her GP, neurologist etc have given for this undesirable problem?
Oh gosh, I am so sorry to hear that. I often wonder what I would do if I had that, or a similar, diagnosis and I like to think I would look at alternatives (eg Switzerland). We started down this route with mum early on but after a while she no longer wanted to pursue it. I know it’s illegal still in the uk but was something we (including mum) were willing to consider. I, personally, wouldn’t want my daughters to go through what my sister and I are, in terms of the stress and energy-draining nature of looking after someone with psp but I also know that, in some ways, mum is now still having good quality of life despite all the restrictions and pain. She has fantastic all-round care and people showering love and attention on her constantly (she is on the narcissistic personality disorder so it’s right up her street!) and I think it somewhat makes up for not being able to walk/speak/eat … although the balance is now tipping and I think she may be more ready to go. She is still at home and can enjoy tastes of food and we try and make her laugh when we visit plus she still thrills at seeing her grand daughters so she’s not miserable and is making the most of things, in her own way. I don’t know if any of that helps and each of us is of course very different, but I personally, would not want to suffer a long, slow decline and would rather be in control of when to go.
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