Hello all. I am new to all this. It's my first post so really just wanted to introduce myself. It's so reassuring to know that I'm not alone.
My mum was diagnosed with PSP in October; by luck really as she had suffered numerous falls, and had referrals to the fall clinic, but she was (mis)diagnosed with dementia. In July she broke her femur and whilst in hospital, she was seen by a neurologist as she has a tremor and when seen later in clinic, he diagnosed PSP quickly. I had a bit of guilt because her symptoms were classic (fixed gaze, backward falls etc) and I can relate her symptoms back at least three years. I got in touch with the PSP Association who were excellent and referred us to a community neuro matron, who is excellent.
Over the last few months, Mum's deterioration has been marked. She can string only a couple of words together (but still understands, which is heartbreaking). She has no control over her legs at all. My dad is her full time carer, but I am concerned about how long this can continue. He moves her from her bed to a chair, and to the commode (she is not yet incontinent; but asks to use the loo, several times an hour, and there is no waiting). She can eat soft foods and has been feeding herself with her fingers. We've been getting by, but it's obviously taking it's toll and my dad now needs a hernia operation as a result of lugging her about. I am going to enquire about a hoist.
When I visited today (I go every lunchtime and evening), I noticed that both hand have twisted into a strange deformed grip. As much as I tried to gently massage her hands, I could not loosen them. It's worse as she has wedding rings on which I could not remove. Also she kept saying that she couldn't see. She could see me and how many fingers I was holding up, and could also see the TV, so I am not sure how her vision is impacted, but she was really distressed, so there must be a change. My mum's 81, by the way.
Since diagnosis, I have had no contact with her GP at all, and certainly couldn't get her out of the house. I have phoned the Community Matron for guidance but she hasn't got back to me. I'm a bit stumped as to when it's right to ask for medical help and if there is anything at all I can do / should be doing.
Thank you for any advice you can offer. I'm sure you will all understand how terribly helpless I feel to see my lovely mum suffering in this way.
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mattnkatsmum1
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When I learned what the symptoms of a neurological disease were was when I realized Larry’s father must also have had a neurological disease. When Larry first started to exhibit symptoms I assumed he was aging like his father. He started to act like his father. In hindsight I now know differently.
Eye problems are an indication of PSP. Her down vision is most effected.
I am so very sorry to hear this. A lot of people have problems with their sight. I think my husband did towards the end as he refused to watch TV. There are prism glasses you can buy online to help with this. Perhaps someone who bought some can help with this?
It sounds as though your Mum needs someone to feed her. Can your Dad do this? She might also need her food liquidised by the sound of things.
She can have carers in to help four times a day. If she is falling and your Dad is now suffering she will almost certainly be entitled to 2 carers four times a day.
You should contact the Neurologist to see what stage she is at. She will be entitled to CHC funding. It is a battle to get it but you will have to do it for them as your poor Dad sounds in a right state. Personally I think they are entitled to it now. However it will probably take ages for them to receive it. It is MEANT to be within 28 days!! So this will be a huge battle. There is lots of info from Kevin_1 on here about it.
Have they got a social worker? I really think they need one. They can sort out the carers asap. They may have to pay for the Care. However do NOT let them take into account any of your Dad's income or savings. They are not entitled to but might try it. They tried it with me but I pointed out to the woman that she was there to access my husband and not me! So it depends on the income and savings of your Mum as to what they will have to pay.
You need a visit asap from the continence nurse too. She will decide what is the best way to help your Mum. Have you got an OT? She will get any other equipment that your Mum needs. It is only on loan by the way so you don't pay for it.
Contact your Mum & Dad's GP. He/she may have heard of this condition but more likely won't have a clue, so you will have to tell them about it. Your Mum's Neurologist may well have sent a copy of the letter he/she should have sent to your Mum to her GP! If there has been no letter received ask Neurologist why. Ask can they please do it.
If your Dad can't take care of your Mum and there is nobody else to do so she will have to go into a Nursing Home. NOT a Care Home as they don't do any Nursing. You should have a look at Nursing Homes nearby anyway. Look them up on the internet and read the full CQC reports for them. Some are great some are dire!
Also make contact now with the local Hospice. Your Mum can go there one day a week which will be a break for your Dad. They also have doctors there and they will hopefully have heard of PSP. If your Dad or you require counselling you can get it there. They also sometimes do respite. Ours only did it for a week but it was better than nothing. Alternatively you will probably have to pay for it unless you have CHC funding.
Get Power of Autorney in place for Health and Finances ask your Dad about this as if he is getting on it might be an idea to do one of each for him too?
I am sure I have forgotten lots but that's a start? Good luck to you all.
If I have made any mistakes anyone please correct me!!!
Thank you so much, Marie. I have POA's in place. Funnily enough, I'm a lawyer and spent years advising people to only bother with the finance one. I realised quickly that the Health and Welfare one would be a Godsend, and i'm so glad I put that in place. The CFC people are coming round to Mum's next week, instigated by the Community Matron, so it will be interesting to see how that materialises. The Nursing Home is, of course, the elephant in the room. Mum cries that the doesn't want to go in a home. Dad gets upset and can't bear the thought of her going in to care, so it's really distressing. Realistically, I know there is an inevitability though.
Can I contact the hospice directly, or do I need to go through the medical people? That does sound like it is worth investigating.
Welcome to the site. We all know the conflicting emotions that go with this.
My husband had PSP. He was diagnosed 2013 but I now realise the signs were there for a few years previously. He died Oct last year, aged 84. He would have survived longer with a PEG but he was adamant he didn't want that. A conversation that needs to take place ?
I nursed him at home but, if your dad can't manage the only other option is lots of carers.
My husband had vision problems. His field of vision was very limited and he couldn't move his eyes much so I moved myself and the TV into the right position.
Yes. Contact the hospice yourself and find out what they can offer. It varies. Ours was a godsend.
Ask any more questions you wish. I don't want to overload you. Remember - no-one has ALL the problems you read here !!!
Karen you can contact them direct but they will probably want your Mum's GP or their Social Worker to make contact. In our case I think it was the Social Worker. The GP pretty much stayed out of things!
Your Dad is entitled to register as a carer at the GP practice. In theory this means if he needs an appointment he should get one quickly! In practice it is very hit and miss but I would say do it anyway.
My heart breaks for your parents. They have been together all these years and being separated is not at all easy. It happened to my husband and it broke my heart. I struggled to get CHC and we ended up apart because it took so long. Had I been paid it when I should have been he would have been home with me. They eventually paid it but too late as he was in the last stages. He died the following month in hospital.
Again not what he wanted. If your parents have enough money to pay for good care at home I really would advise it. Don't let them be put in a position where there is no alternative. If they get CHC funding that can be used to employ carers to care for your Mum at home. Then no need for a Nursing Home? That is what I wanted to do.
However please contact the local council now and get a social worker who will get carers in. It is obvious they need help asap. The social worker and the district matron helped us apply for CHC funding which I believe is a requirement. They must both be involved when she is assessed. Your Father and someone else from the family need to be there too. Make it sound much worse than it is too! Do not be worried about challenging them if you feel they have underscored. I am sure you do that in your job anyway?
As you are a lawyer you have a huge advantage. Firstly you will understand the language used and secondly they won't mess you around! Use your headed notepaper and write to them or email using it!
Good luck and stay in contact as there are sure to be things which happen and you haven't thought about. The people on this site are great! They are either going through it with loved ones or have been there. Maybe it would help your Dad as the carer to talk to some of the people on here too? Men find it hard to talk and so bottle it up. Not good!
This is a tough row to hoe, but your dad should be getting more support than he is. I agree with everything Marie said. When R was diagnosed we were advised to sort out asap the legal side of things (LPAs, wills, etc.) and to get connected with physiotherapists, occupational therapists (OT)and speech therapists (SALT). The SALT and OT have been very helpful, especially the OT. Your dad should have all the equipment he needs to help your with your mum - stand-aids and or hoists, hospital bed, pressure-relieving seating and mattress, glide sheets, commode chair (one that tilts is invaluable), wheelchairs. There is still a fair amount of physical handling, but it will help him not to injure himself.
We also have a specialist neurology nurse who visits us every 4-6 weeks and is a strong one-point-of contact advocate on our behalf if we need anything or should be seeing someone, eg a hospice nurse. Although we are now linked into the appropriate network of health professionals, every so often she goes to bat for us to get/keep things moving.
"GP palliative care registration should occur promptly, to ensure continuity of care and access, and in conjunction with the Gold Standards Framework." This is from one of the PSPA handbooks. This is something you should also check if it is in place. It means (in our case) that R's case gets discussed every month by the team who know about his care. Hopefully keeping everyone abreast of his progression.
Hope some of this help and your dad and mum get the help they need and deserve.
Thank you so much. We are getting some help, but nothing like enough. I had never heard of GP palliative care registration and will speak to the GP (if I can ever get through!). God bless you.
You will find in this chat information and suggestions from experienced caregivers that will be useful to you.
Not all PSP patients have the same symptoms or react in the same way.
With the information you will find in this chat you will have to build your own solution through the "test-error" system. That has been at least my case.
Find out if there is a member of this chat near your city who can guide you on how to find the necessary help.
By private mail I will send you my experiences wanting to be useful.
Firstly u am so sorry that umuou, your mum and your dad are going through this, it is an impossible situation.
Much of what you have said resonates with me. My dad passed away 3 weeks ago having being in a nursing home since July last year.
In our experience, support services are happy to let you shoulder the load as long as you can. My dad was nurses by my mum at home and also had catered coming in 3 times a day, even so it became too much for my mum and in July last year dad moved into a nursing home.
My advice, push for CHC, contact PSP Association to see if there is any specialist help available in your area. Chase, chase and chase some more the social worker who should be coordinating your mum's care.
Ask for a referral to the local hospice, you can never have their involvement too soon, have the difficult conversations abnout end of life care and document your mum's wishes, believe me this makes things that much easier at the end.
Macmillan nurses can also offer support, and may be of use for end of life care so again, it's an avenue to explore sooner rather than later.
Finally, make use of everyone here
No-one quite understands like we do, we're all going through it it have been through it and will support you through it all.
Oh Martha, so sorry for your loss and thank you for your kind words. I am so grateful and relieved that I have found this forum. I will definitely take your advice and push harder. X
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