Hi there, my Mum is almost 2 years diagnosed with PSP and definite worsening on mobility and falls plus behaviourally and emotionally it's getting harder for her and this flows through to the impact on my StepDad. We maybe don't hear/see all of it but think it puts strain on things day to day, understandably, and so me and my sister are trying to tee up as much support as we can for my Mum and StepDad to make it alll a bit easier...
- We have Attendance Alllowance in place which is a useful contribution to household expenses in these tough times
- We are in process of submitting for Blue Badge
- We are chasing down Occupational Therapist appointment as we feel this could help make the bungalow less dangerous as her balance and mobility gets worse. Slow going though..
Just wondering if anyone has further actionable recommendations for accessing care support, additional benefits etc that could help. I will go through documentation online best I can but just great if any 'must-do' tips anyone has to help prioritise where we go next....
Very aware tough times will at some point get much tougher so want to do as much as we can now....
Thanks in advance!
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tangotango69
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well done for being so proactive. A physiotherapy review may also be helpful in terms off maintaining core stability which may help with falls and the ability to get up after a fall.
It is also worth spending some time planning ahead, I realise this may sound upsetting but in order to respect your mother’s wishes choose your moment to discuss the “what if “ situations; setting up Lasting Power of Attorney, establishing if your mother would want a feeding tube (PEG) if she were unable to swallow.
Once you have the difficult conversations done then it is time to seize the opportunity to make new memories and enjoy times with your mother.
We did have a physio for a bit a while back but given the mobility worsening, definitely worth revisiting...
You are right that those awkward conversations are right to plan in at some point - it's just really tough to bring in when it's already rather emotional. I will have to think about this carefully with my sister on how/when to handle. I just don't think it's now...
I would also look at banking your mums voice as soon as possible so it can be used in the future with communication devices if she looses the ability to speak pspassociation.org.uk/infor...
Thanks Zerachiel - I will look into the carers assessment as I sense that willl be both a help for my mum and also relieve strain on my stepdad...
And wow - I have not considered the voice preservation. That might be a great thing to do, even if her speech is already a bit of a struggle. I have been impressed with what they have done for Rob Burrow on this front (the Rugby League player with Motor Neurone Disease)...
I totally agree with both Tippy and Zerachiel's replies. Physio and OT are both so supportive with both advice and equipment.
Some health authorities also provide a document in which you put your Mother's wishes if or when hispital/paramedic assistance is needed. This is addition to any LPA's.
Thank you Anne - it feels OT could be a really big step to risk assess the bungalow and just try and minimise the danger from her falls that are increasing in frequency it seems. My sister is pushing hard on this...
We will look into those docs as well. It feels like that when the subject is broached it would be lovely to section it away so it's there when needed but we don't need to have it front and centre in thoughts...
Are the District Nurses involved at all? Chris ended up needing dressings from injuries sustained in his falls. If they are, they csn be a tremendous conduit to getting Physio and OT involved and can probably access the paperwork I mentioned.
My Mum sometimes tries to brush off the extent of the injuries and doesn't want nurses or docs involved to look at it but we are trying to tackle that, along with everything else. It feels like we need to get stuff going on a few fronts here to really help!
Wonderful work you are doing - keep it up! I am male 80 diag PSP 4 yrs ago, and rolling downhill. Partner is carer. You've done Living Will? (end of life stuff). Here we are in upstairs flat and finding bungalow with wet room is really hard! Off for app't now, so talk later! Best wishes TimbowPSP xx
Hey Timbow, sounds like you are keeping a positive outlook best you can, despite the circumstances and sounds like you have a close carer who's there for you which is great. Hope appointment goes well!
Is your Mum getting the higher level attendence allowance? There are 2 levels. Also you can apply for Council Tax reduction due to mental incapacity.
What we found most invaluable for Mum was the support of a Community Matron. She initially came about once a month but increased frequency as Mum needed it and was able to do referrals to OT, Physio, Dietician, Speech therapist, Bowel & bladder nurse etc etc. She was also able to prescribe some drugs. She saved us many trips to the GP and handled those difficult conversations about Mum's wishes, which were incredibly difficult for me but I think Mum was relieved once they were done and it definitely helped at the end. Mum & I were very close & I think I would have guessed right but to know the path we took was exactly as Mum wanted took a load of pressure & guilt off. Likewise I found notes Mum had made about music & readings at her funeral, which I definitely wouldn't have chosen if it had been my deciscion.
Yes, we have just activated the higher level of Attendance Allowance but will look at Council Tax reduction - didn't know about that route...
A Community Matron - also wasn't aware of that. I will dig into that - they sound like a potentially really useful link to the different services and a buffer on some of those difficult questions to ask (that I don't know whether I can see myself asking at the moment). I guess it will come down to the strength of dynamic and relationship they build up with my Mum to make it feel a natural and open conversation when the time is right. Sounds like these people are proper godsends...
Sounds like it really helped you manage it all and for your Mum to get what she wanted - that is reassuring, despite the painful process it inevitably is...
Sorry to hear about your mum. My mum was diagnosed almost 3 years ago.
You’ve got some great advice. I would add that I have found the Parkinsons nurse useful (linked via the neuro consultant) and speech and language therapist (for advice on swallowing, food and communication). Also local hospice can provide great support, both for your mum and family. They helped guide us through those difficult conversations regarding advanced care planning. Whilst it was emotional and difficult at the time, I’m glad we got it done and out of the way. As things move on, it helps me to advocate for mum and keep in mind that’s what she wants, even with hard decisions.
Last thing! Make sure you find the PSPA if you haven’t already.
Thank you! So much great advice and pointers from people on here and you have added to that - will take all that on board and see what we can get going.
I did find the PSPA a while back but it was at the start of the diagnosis so have been quite 'passive' to date but feels like a time to make good use of the community and those who have been through or are going through very similar things...
Despite having an effective, efficient and gentle GP, the necessary scheduling of visits to his office or to the emergency hospital, the necessary displacement, always complicated, the "roller coaster" of more or less banal symptoms that PSP generates, many of them unforeseen and repetitive, led us to a certain experience that, together with the possibility of consulting by telephone with some medical friends and family at any time, allowed us to alleviate the symptoms quickly until hours or days later we could consult with our GP.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
These kind of diseases manifests they self in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the support of a GP and the "trial and error" method, you could achieve a quality of life with interesting moments despite everything.
I am not a physician.
During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family and if the those notes-document with our experiences and our information are of your interest, do not hesitate to let me know to send it by the private mail of this chat.
Hug and luck.
Luis
Note.-The aforementioned documents include some photographs in "jpeg" or "Excel" charts that the PSPA private chat does not support and are canceled in the copy that I include in the private chat. In that case, if of interest (pictograms and communication boxes, the description of symptoms of the different types of PSP et cetera) the only solution is to send it by email to a "gmail" or similar email address. If you are interested and to avoid unnecessarily spreading your email, I suggest you use the internal "chat" channel of this website.
Hi, the PSP association in the UK are very helpful. You can go through with them what you have in place. For my mom we have a private neuro physiotherapist that comes once a week and they understand PSP. This just helps her to enjoy a full body massage and they put gentle music on too. For the family we've also made a folder that has all the contacts and services she uses so it's easier for everyone. We also try to take the load off my dad who is the 24hr carer and he's exhausted too. Best wishes
thanks Ollie. The Neuro physiotherapist sounds a really good thing to build in to a routine and yes, keeping everyone across all the different elements to care is useful. Spreading the load is obviously key. Good luck to you and thanks again…
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