Sorry more questions!!

Hi everyone

After a dreadful night I have explained (yet again) to my mum we cannot continue as we are! She seems to have finally accepted I'm right.....

Today I need to (again) explain to my Dad we have to start using the hospice services and also that he must reduce their savings of approx £25k right away! We need night carers urgently! And I know it's awful to say but I want the council (UK) to provide the care!! Without cost to my parents!!

If this doesn't happen I honestly don't know what we are going to do......the bed and clothes had to be changed 3 times last night, the stress is starting to take its toll on mum and me!!

What I want to know is:

Will the council provide night care (free) if the savings are under £23k?

Will the council start snooping and looking into any movement of monies?

What happens if a care home is eventually required? Financially and do care homes look after people with Psp? Maybe these are questions for the hospice??

I'm sooooooo sorry for asking all of the above but I honestly don't know what to do for the best?? Life is becoming impossibly hard and as it is my poor dad isn't getting the care he should be! (That's many because they've refused it up til now)! But I'm literally at the end of my tether and will probably breakdown or end up in an institution if we don't get help!!!!!

Thx in advance


49 Replies

  • Sorry it so hard. My local authority is no help at all but my husband is not at the stage of needing night carers yet. He does receive direct funding because we have no savings left so we employ a carer privately. One thing I have found since David has had a sheath catheter fitted it is a godsend no more night time accidents it takes a bit of getting used to because David would try to get up and use his bottle and sometimes he did not make it. But after the first couple of nights with the catheter and night bag he and me get a much better night. It is also much safer for during the day because getting up and down to use the bottle was getting very risky especially as I am still working and the carer only does 2 hours a day. Not much help to you but worth investigating so your Mum can get some sleep.


  • Thank you Jane

    We have tried the sheath thing but find it extremely problematic to fit!

    So we use the bottle n pull ups, however there is no control with the peeling now! It just flows!!

    I simply don't know what the bloody answer is?!


  • Hi George has got a catheter fitted, the community nurse did it, save washing and night time get up to use the bottle, but like Jane said the bottle is hit and miss, you just put on the night bag, it is easy. We also had a very bad night last night, so am feeling rubbish today. I think you answer is to get a catheter fitted. Good luck Yvonne xxxx.

  • Thanks Yvonne

    Our worry with an actual catheter is, possible infections.......


  • George did have an infection at the beginning, but all ok now, the doctor at the hospital said that you can have a dose of antibiotics hen it is first put in. Yvonne xxxxx. Really it has been a god send x

  • There is something called a pubic pressure urinal . Search on line for it .

    It is placed over the penis and held around the waist with rubber straps.

    Not for everyone but it might suit you .

    The continence nurse arranged it for. My husband to try. It has a bag to collect the urine .

  • My dad wears pull-ons - the urine leaks almost every day - so we wash him and change his clothes - and change the dignity sheets underneath - but his doctor recommended against catheters of any kind saying they would cause an infection

  • Not sure if sociol services will supply night sitters but they will supply carers for certain amount of time during the day. They will of course get equipment in place ie hoists etc because everyone expects us to lift and lug but the carers can't. Have they got a social worker involved. They are the people to go to for help organising the care and it sounds like you need to get referd to the contanance team.

    They will asses his needs and yes they do need to see financial transactions for several months previous.

    When they assessed us they wanted to know my finances as well as Brians. Think that was just to make sure that i hadn't moved his money into my account.


  • Awe thanks Jane

    I'm waiting on Dads say so to contact social services for an assessment

    Oh bloody ell dunno how we"ll sort the money situation then?!

    So much to do and some things seem to be getting left to late x

  • Sam it is illegal to move the money out of your dads account, the can go back and check, so you could get in to trouble, so what is the point, when you dad needs help? You always pay your taxes, and when you need help, it is not always there. Yvonne x

  • Hi Yvonne

    Is it really illegal? Is a crime? X

  • Yes I think it is x

  • I can confirm the local authority can look back at his and your mum's finances for over 2 yr, if they think you have hidden or moved money they can demand repayment of any costs they have incurred including their search costs which is not what you want.

    In Wales the LA take care of all the care costs if you have under £23k each household but you are charged a flat fee of £60 a month as a contribution which is reduced if you needs less than the fee, may be different in England.

    You need to get advice suggest go to the local CAB or if you have one near by the Carers Trust. The CT can help provide sitting service for day but also can assist in getting you night care if their assessment indicates it is needed. You should google Carrers Trust their website I think is but may be wrong they have a map that shows where they are near you. Try contacting Marie a Curie Nurses you cannot self refer but they can tell you how to get their help. These are in addition to contacting your local hospice.

    Good luck and best wishes Tim

  • Wow wow wow!! Thx u Tim!!

    Marvellous advice and I certainly didn't know about Marie cure for Psp!!


  • It is fraud.

    You really need to get in touch with your local Social Services. They can give you the info about what is available.


  • If you look it up i think the limit is something like 32k for a couple. And if it is for home care they don't take the house into the mix. But don't try and cheat the system or you could loose out. Janexx

  • Another thing that might help is get your Dad's GP to register him on the palliative care register that why you get a dedicated Matron who comes to see you regularly she coordinates things like the Continence Nurse Occupational Therapists she could probably organise a district nurse to come and do the catheter daily. Our Matron is really good and does the chasing for me.


  • I agree with Jane get social services involved and also the district nurse, our have been wonderful, and it is easy to change the catheter bag.

  • i`i agree: the CM hAS been great


  • Dear all

    Dad has just agreed to be referred to the hospice!!!!! We've rang the GP and advised


  • You can do a self referral for Social Services and the OT Just ring them up. i had to fill out a form for the OT they told me to write urgent on the top of form and send it straight back within a week Social Services and OT had done a home visit and started the ball rolling straight away they have been brilliant we have carers 4 times a day as my husband is bed bound and needs turning every couple of hours.I had to change my husbands bed a few times during the night and day he had a convene but now has a catheter he has had a couple of infections but it has settled down now.and he sleeps most of the night now I never had to show anyone my bank statements they just took my word that we didnt have more than £16000 in the bank

  • Thx you Nellie

    Fabulous that they took your word for it!

    Can I ask did the infections invole hospital visits? X

  • Hi unfortunately they did mean hospital stays

  • Well done for getting your Dad to agree to contacting the hospice. They will help with all of your problems, pointing you in the right direction. I suggest you contact soical Services as well, put your boxing gloves on, they can be a bit of a nightmare, but in the end and after loads of assessments, they will get the right people involved! Also I would go to the GP and tell him, everything you have told us. He again should be able to get you referred to the right people!

    As for the money, they will check your Dads bank balance, if there are big money withdrawals, that you can't prove, or they deem to be spending for spendings sake, that will be taken into account. There is a funding, CHC, that is for people above the threshold, where the government pay for Soical care for people with complex life limiting illnesses. It is quite hard to get sometimes, we managed it quite easily, but, i think we live in an area, where they have come across PSP before! Again the hospice should be able to help.

    Please don't despair, I know it very hard to get help and fighting is so draining, using up much needed resources, that you need to care for your Dad! But he needs that help and only you and your Mum can get it for him. You CAN do this! you HAVE to do this! So pick yourself up, dust yourself down, put those boxing gloves on and fight for your Dad!!!

    And don't forget we are here to pick up the pieces and listen to all moans you WILL have about our wonderful care system!!!

    Lots of love


  • Thx u heady!

    Your responses are always fabulous!!

    Social services will be contacted next week!!

    I find it really hard coping with too many things at once!

    Today I'm drained from no sleep but I will fight on

    Chc is not an option yet, we didn't meet their stupid criteria!!

    Big hugs


  • Silly question - but is your dad claiming for all the benefits eg Attendance Allowance etc?

  • Attendance allowance yes

    And it's not a silly question x

  • Hi Satt2015

    Sorry you are having such a rough time. My brother was my mum's carer on his own apart from two afternoons when I collected her and took her out for a few hours. She initially had over £24k savings and she owns the flat they live in. I was really worried about the financial situation. My brother was on his knees and following a couple of sessions of respite it became clear my mother needed to go into a nursing home. Whilst I am not sure I really understand the finances, and the council will look into them, my mum pays about a third, adult social care pays about a third and the final bit is paid by social services but we will need to pay it back after mum passes away because she owns a property (I think they disregard the property if a spouse/partner continues to live there). The nursing home has applied for CHC which is effectively NHS funding as PSP sufferers can and should be considered as having complex medical needs. CHC is a bit of a minefield and as far as I can tell its a bit random as to who qualifies and in which locations. Nursing homes will care for PSP sufferers but you may need to give them some info about the condition. I recall that the PSPA Association has some really good stuff for professionals. Whatever happens try and get some help because you and your mum need to be well too and try and get some proper advice as all our circumstances are unique. I spent a lot of time on the internet but probably should have asked the PSPA or AGE Uk. Good Luck Coyle51

  • Thx u so much for your advice



  • Hello I'm now confused reading some responses. Dad's assessment was based on his pension ,parents have less than 24k savings but have to pay full amount for carers and we're told if we wanted night carers we would pay full amount too ,we put him into respite but still had to pay with a £100 contribution from council but with this you cant choose where he goes and the only option was a home where they (after a visit )had never had a psp patient and no real bloody knowledge of it. this is even with the personal budget which I fully don't understand. As for night time issues we use a front pad inside pull up on top of a tenna bed liner on top of a plastic bed sheet seems to do the trick and only have to change front pad during night. If the bank account is joint they can only assess on a portion of it as assets belong to your mum as well. X

  • Hi Satt2015

    my thoughts are with you and yours, we have been where you are and it s a nightmare. Luckily my hubby had been going to the day hospice one day a week and they were a fantastic help they sorted CHC funding for us and also offered us Marie Curie night sits. My hubby is also under the care of the local Neuro Rehab Team, what fantastic people they are and they get things done really quick we got a hospital bed within a week and a hoist the next day I couldn't believe it. And they arrange for all his physio, SALT and consultant to see him at home. He has a catheter fitted and yes sometimes infection can be a problem but if it gets bad enough to need IV antibiotics we no longer go to hospital all these things are undertaken at home, surprising what can be achieved if you dig your heels in. At the end of the day your loved ones comfort and care are the most important thing so don't be frightened to tell them what you want and what suits your dad. If you can get CHC then it will include night sits so keep pushing and once in contact with the hospice or palliative care team they should push for you. Just remember your mom and dad and yourself have paid in all your lives you are due a little help now you need it. Thinking of you and keeping my fingers crossed,

    Good luck

    Cazzie xx

  • Again amazing advice!



    I couldn't manage without all of you x

  • One other thing worth knowing - the £23,000 in savings is only one thing that is taken into account, they will also take income into account. If your father has a private pension that will be taken into account when Social Services do their financial assessment. We easily qualified on the savings front but the small private pension that D had paid into for years (believing that to be the prudent thing to do) meant we couldn't get any help with funding care. It also meant we didn't qualify for a facilities grant to help with providing a wet room. We still don't have one (as we can't afford it!) and are still struggling with an over the bath seat.

    I'm sure the Hospice will help you with all the information you need - they are wonderful!

    Vicki x

  • Oh sorry - only just read the reply from adorable which says the same!


  • Oh no! I'm not doing this very well!, don't know why it changed that to 'adorable' - it was meant to say Dorab although I'm sure you are adorable Dorab!!


  • Thx u Vicki

    It's all sooooo wrong!!

    We recently paid to have a wet room put in downstairs!! Cost about 8k

    No point in saving really or having a pension to get stung in the end!!


  • Even though we were unsuccessful with CHC funding it is worth getting the ball rolling as this illness can progress so fast what seems inappropriate now in a couple of months may be on the mark - talk to your community matron or OT . Also get your community matron to refer you to Marie Curie- they are brilliant and have helped us with at least one night and sometimes two nights a week sitters - saved my life !All the other advice about moving funds is spot on .


  • Be careful. Here in Kirklees they want to see your bank statements and take only the persons pensions etc who is ill into account when asking for payment. We had a financial statement done recently and even though savings are below the limit it doesn't count if you have a good income. On an income of £15,000 they ask for £75 a week for payment of carers. That is for one shower every morning through an agency. They haven't taken my pension into account for which I am grateful! Attendance allowance, works pension and state pension are taken into account. Seems unfair as we have worked all our lives but that's the way they calculate. Hope this helps xx

  • hi there

    first of all make yourself a cup of coffee and make a list!

    if dad is already a pt with your local hospice ring them monday, ask for a domcillary visit from either nurse or dr, they will have a huge range of services on offer. rog goes to the day hospital every week and he probably is about at the stage of your dad. normally they pick and drop them off.

    ring your local social services emergency line if you have'nt already ,refer your mum and dad tell them they are vulnerable adults and you need an urgent assessment or reassessment if already in their system. they have a legal obligation to act quickly.

    £22000 is the cut off so go and spend a couple of grand! their financial assessment will be based on income as well as savings. we have to put a max of£110 per week for carers during day they offer no night care. £220 if rog goes into residential respite care per week.

    a good gp is worth their weight in gold, i make a double appt every month as appts are difficult to get! if we don't need it i just cancel.

    i am presuming the OT's have been in to visit if not your gp can refer.

    there should be a specialist nurse for complex neurological disease get your gp to refer.

    also get a referral for the incontinence nurse.

    my heart goes out to you darling, just a thought make sure you have both health and financial power of attorney in place, expensive but essential, i found it easier to do through a solicitor.

    i retired in may after forty years as a midwife and RN and i find the whole system a minefield!

    sending you a big hug xxx

  • Lovely thx u Julie!!

    We have the following:

    A neuro team that includes physio n incontience nurse

    I've contacted the GP yesterday for a referal to the hospice

    I still need to contact social services (a job for next week)

    Dad is seeing his Psp specialise/doctor mid December for 6 monthly visit

    We have a hospital bed, no hoist, been told we don't we one (I think we do) because I continually have to lift, grab and pull my dad (13 n 1/2 stone approx) out of his chair and up off the bed, the physio also said the hoist would be too traumatic for dad! What about my back? I'm only 5ft and not physically strong!!

    Dads currently situation v limited walking, mainly wheelchair, we do have a walking frame and shower chair. The speech is getting more difficult as is eating. The falls rather frequent and he wobbles and freezes a lot!

    Oh god, I'm boring myself by going on!!

    Thx again

    Big hugs


  • We were planning on getting a hospital bed for dad - then I found a metal incline-kind thing - I will post a picture tomorrow

    It has metal pipes all around a cloth in the center - there are 2 parts to it and they are in a kind of a hinge - one is placed on the bed and you can pull up the other one - there are grooves that lock in every few inches - so you can lift the patient if they are lying on it

    We put this down - and added a a single mattress on top so dad doesn't feel the pipes pinching/hurting him - and this arrangement is on the double bed next to mom so he doesn't feel like he is on a separate bed

    I don't know what it's called - but I guess it's something (lazy) people would take with them on a picnic or on the beach to recline against

  • I can only speak from personal experience however I advise you to first talk with your GP about how difficult things are. The GP will refer you to the Community Matron who will come and do an initial assessment and check list for CHC. If you pass the first hurdle a panel will come to your home from CHC and go through the check list again with you. It is important you have worked through the check list yourself (you can find it online) and make notes under each heading and why. Be prepared with doctors letters, Carer's notes, list of medication and illnesses, anything helpful which shows why you should receive the CHC funding. There is strict criteria but if you fall into the category of needs you have to make sure they are aware. Don't assume people can read your mind or know what you're going through as they won't, not because they don't want to but everyone has different needs. Make a good case as it's your life saver and you deserve the help if your needs are complex and unpredictable, etc often the case with PSP.

    Our GP also referred us to the Hospice as they now deal with patients with long term and terminal illnesses. They have been marvellous and have an excellent team of nurses.

    Get in touch with your local Crossroads who are a fountain of knowledge and will help you to complete forms.

    Make sure you apply for everything you are eligible for - the Attendance Allowance, Carer's Allowance, Blue Badge, Taxi Card to name a few.

    Persevere with the convene at night as a catheter in situ increases the risk of infection.

    Get a referral to your local council OT from the Matron who will help with things to make life easier, say a wheelchair, handrails, thresholds and grab bars, etc. Get yourself in to the system. There is plenty of help available. Unfortunately it sometimes takes a crisis to discover what assistance is out there.

    Be organised with your paperwork, keep all the doctors letters, prescriptions, etc. physiotherapy and OT paperwork, Health Visitor file, et. Keep a file in order which you can present to CHC if necessary to show what's going on. If you take the time to be organised it will help massively in the long run. Co-op a good friend or family member to help you with some tasks. A friend of mine taught me to type up a Health CV so that everytime we had a hospital admission or doctor's visit the history was there for all to read. Doctors love health CV's as it saves them lots of time and they don't have to ask so many questions, sometimes awkward questions in front of everyone.

    There is no getting around it, this is a very long journey. Someone asked me how I cope, but I say it's because I have to. Use the journey to bring your family closer together rather than apart. Treat others in ways which don't always cost money

  • Fabulous advice!

    Huge thx u



  • Satt2015 do you work? Our are you just looking after your dad? X

  • Hi Yvonne

    I've given up my job to care for my dad


  • Oh dear, you can't get away for this horrible disease, sending you a big hug, your dad must be very proud of you. Yvonne x

  • Awe thx u Yvonne

    That's very kind!

    Big huge hug x

  • :) - I did too, about 4 months back - all the best, it doesn't get easier you know.. but you get more used to it and stronger...

  • Awe bless you!

    Well done!!

    And more tired!!

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