Husbands been diagnosed with psp

Hi I am new here my husband is 58 and 2 years ago was diagnosed with frontal temporal dementia I was just coming to terms and dealing with that when 3 months ago at the cerebral function unit hope hospital a specialist told me he also had psp,my husband has had a few falls one bad one over the side of the bath,he has to have Botox in his eyes because his eyes shut for hours,his balance is my worst worry and with the dementia to he cnt do things carefully,I am struggling now with the showering our shower is over the bath so stepping in the bath even holding the pole is unsteady,I am waiting for the ot to come out for a assessment with adaptions at home,but the waiting list is 8 weeks and then they say 8 months for a grant to come through,I dnt think I can cope for that long,anyone now of anyway of speeding this up? We are going to get helpin a morning soon but they wnt shower him if there's a risk of him falling,nice to now there's more people out there in the same boat,take care Sandra x

17 Replies

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  • Hi Sandra

    My husband was diagnosed with psp in 2010 but looking back with hindsight his symptoms began at least 4years previously. He has got far worse during this past year and I can relate to what you're saying about your husband, especially with showering, it is very hard.

    Most of the professionals we,ve had dealings with are mainly ineffectual, they say much but on the whole do very little. I organised my own help with an agency but we do receive financial help from the social services through Direct Payments but everything else we've dealt with because local authorities are so slow and long winded.

    As services such as personal care is means tested, we never bother to ask for them, I just have to struggle through but it is very hard.

    Take heart, keep on this forum, you will get a lot of support and tips on how to manage things.

    Dorothy Thompson

  • hi

    I have PSP and we had to do our own alterations to the bathroom when we moved into our ground floor flat - the OT would not even come and visit until we had moved in and we had to have the bathroom done BEFORE I moved in (shower over bath as you say) and we had to then get the rails installed too!

    it was something we had budgeted for luckily but the bidet was an extra too so that I could clean myself more easily and the whole project meant that we had to live in a local pub for 2 weeks whilst the work was done,

    boring I know and costly

    by the way you must get Direct payments from the local council (they have cut mien without giving a reason and I had had to cut the no of hours which my carer comes in to help me

    you also need to have a social worker too to get all this sorted

    lol Jill

    ;-)

  • Hi Dorothy, have you applied for Continuing Health Care, this is not means tested. We have recently been awarded this and it means we will now be able to arrange our own care without worrying about the cost, the process was started in the first instance by our District Nurse. Regards Lynda

  • Hi Lynda, My husband recently spent 5 nights at the local hospice to give me a break. When I went to collect him, the nurse in charge said she had phoned social services and asked them to contact me as they think we should be awarded Continuing Health Care. We are self funding at the moment. She said, and I know from reading other blogs, that it is quite difficult to get. Do you have any tips that may help secure this? My husband doesn't have a peg and can just about walk from bed to shower to chair with my help but as he can get out of the chair, I can't leave him and use a monitor when I go out of the room.

    Best wishes.

    Nanna B

  • Hi NannaB, The District Nurse initiated the procedure for me, she had to send her report to the local Clinical Commissioning Group and then an assessor came to my house with a representative from social services. They assessed my husband on several issues, care, physical ability, behaviour etc. They have a standard form which they have to complete, they sent me a copy of their assessment which I was able to comment on if I so wished, because of the condition they recommended Continuing Health Care. This assessment and recommendation is then sent to the Local NHS Continuing Care panel who have the final say. It was said that usually if it is recommented by the Clinical Commissioning Group then it is awarded. I would say that my District Nurse was instrumental in our award so if you do not already have a District Nurse visiting it might be worth asking your GP if this is possible. My husband is not bedridden as such but is now unable to walk or stand unaided. I hoist him into bed and into his chair. When he was assessed he was still able to walk a little with my help but after a few falls we have given this up. He has been assessed as sight impaired and he also has speech and choking issues.

    Good luck, I must admit I did not think I would be granted CHC but I am now looking into Personal Health Budgets which apparently mean I can choose my own carers instead of having supplied from an agency (having issues here when they keep sending different carers so not having continuity for my Pat which as you know is essential) and I can either opt to manage the budget they (not quite sure who they are at the moment) award us or have a third party manage it for us.

    I never knew anything about social services etc until I started on this path when my Pat was diagnosed, certainly is a steep learning curve but I have learnt a lot from this website.

    Regards

    Lynda

  • Thank you Lynda P. My husband will not accept outside help at the moment but your information is very useful to know for when the time comes........

  • As Nannap has asked about chc I wondered if you would be able to explain application process, key issues they look for and what you are able to do with the money. I have been the sole carer for my husband since he was diagnosed 9 years ago. Like Nannap my husband wouldn't be able to do anything on his own if I didn't support. Falls, incontinence, choking, lack of speech and poor eyesight etc are daily risks without me being there. I thought a person had to be bedridden to get chc. Can you clarify?

  • Please see post to NannaB re the CHC.

  • LyndaP If you have any information on Continuous Care (UK) for PSP patients I would be very grateful for it. I get conflicting reports. One hand says is is means tested the other says it is not. The 'Official sites' I've tried are no clearer on this issue. Any information on how proceed most gratefully received.

    Confused.

  • Hi CHC is not means tested, I had means testing before we were awarded CHC and I would have had to pay for care but with CHC I do not. As I advised to NannaB the District Nurse was instrumental in initiating the paperwork and it just flowed from there.

  • Shep - We got a sliding shower chair that goes from the floor outside the tub over the edge of the tub to the floor of the shower. We would get mom on the chair outside of the tub, lift her legs up over the edge of the tub, and slide her into the tub. We would do the reverse to get her out of the tub and dressed. I got a used one for 75.00. They cost 475.00 new.

  • Shep - We got a sliding shower chair that goes from the floor outside the tub over the edge of the tub to the floor of the shower. We would get mom on the chair outside of the tub, lift her legs up over the edge of the tub, and slide her into the tub. We would do the reverse to get her out of the tub and dressed. I got a used one for 75.00. They cost 475.00 new.

  • Hi Shep,

    It may be worth finding out if there is a Community Matron for Neurology in your area. Adrian is in this role in Mum's area and has been invaluable in chasing people up and moving things along. It would also be worth talking to the PSP Association Specialist Advisor for your area as they may be able to help too. You can find out who the Specialist Advisor for your area is on the PSP Association website: pspassociation.org.uk

  • Dear Shep,

    We had our bathroom remodelled about five years ago for my husband who is now 59 years old.

    I was able to get a grant pretty quick (right time & place perhaps?), and I can give you some contacts, ideas etc if you live in Western Australia with funding applications etc.(There seems to be large variations in getting funding and support based on where you live!) This state in Australia has some extra avenues for support that are not openly advertised and are based on many factors including age, family dynamics, falls risk, home location, current support services, home ownership, home configuration etc, etc... (& yes - there is bit of leg work/phone work required!)

    In our case because I wanted the bathroom altered soon after John was diagnosed before balance & safety were a concern, and were able to shop around for products at the 'best' price - I submitted a proposal to pay for most fittings & electrical costs (toilet, basin, taps, heat lights, easy touch light switches, temperature control regulator for solar hot water,sliding door, new handles etc) and the grant paid for the labour & new toilet (incl new positioning of toilet, removal of bath, partial removal of walls and doorway, and fitting of new doorway, most grab rails etc). Tiling - well I learnt a new skill!

    We we very fortunate to have an OT & interior designer on side who were able to provide sketches & advice on product placement & choice at a very, very low cost for us.

    Our starting point were web sites like -

    ilcaustralia.org.au/search_...

    yourhome.gov.au/technical/f...

    equalaccess.com.au/wp-conte...

    In all - our bathroom is now pretty basic, with no bath - and is now described as fitting within the model of the ideal 'Universal Housing Design'. This means in theory - no matter what age you are and how incapacitated - access to use the bathroom with safety and personal comfort is available.

    N.B. All said - I do miss my bath - and yes I cried when it was smashed to pieces to remove - It was my sanctuary for time out! (Yes, I know I was a big sook - but still...) And ... Never in my wildest dreams thought I would have give so much consideration to where a toilet roll holder was to be placed - yes - we did make lots of jokes about it at the time!!!!

    Regards,

    Alana - Western Australia

  • Hi thanks for all the replys ithe ot is coming out on Friday so fingers crossed I will no what I am facing after then,forgot to say I live in sale Manchester UK I will keep on posting all your help is great Sandra x

  • The ot came out to us yesterday and it was a relief that she was really clued up on psp and its symptoms and my husbands needs for the future she is apply for a disabled facilities grant so we can have a downstairs shower room and bedroom! hope we get it,in the mean time we are going to get a swivel shower chair,ramps at the front and back doors,a bed variator to help,lift John up in bed,I am so relieved that the ot new of my needs as a carer and johns needs to,from what I have been reading on here not many professionals are sure of psp,so now I just pray we get this grant approved,thanks for all you help and advice Sandra x

  • This is such a very interesting and helpful subject .

    I have been struggling caring for my husband John for a long time We have lived in our house for 47 years and do not want to move . We installed a stairlift and walk in upstairs shower and placed grab rails everywhere .

    The district nurse arranged for a Hospital bed and the OT recently had him measured for an armchair . He is a very short man but still not light .

    We have started the road of carers they come at night to help him onto the lift and bed ,use a wheelchair to go from chair to chair and also use a commode chair because he cannot get in and out of the toilet or turn corners .

    I have now asked for help I getting him up .

    We live in S Wales UK , and how ever much we need the local council will only charge £50 week . I do believe this is not the same in England .

    You talk about continuing health care . My mother had a serious stroke and went into a nursing home . All the arrangements were made while she was still in hospital and happened so quickly in some ways out of my hands .

    Not knowing how the system worked we still paid for the nursing side of things . It wasn't until the week before she died they told me she could get continuing care . I didn't even know there was such a thing.

    The carers we get are arranged through the local council and my social worker and OT have started care plan . Do you think it is the right time for me to ask about continuing care . After all it's not going away is it .

    I would like to be able to choose the carers who come but at the moment don't want to take on any more stress .

    Please all keep posting on this subject and good luck and health to all the husbands wives partners families etc who LOVE AND CARE SO MUCH .

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