For goodness sake

I got really annoyed today with the re habilation nurse that came in!

I was trying to explain the difficulties dad has in rising from chair and even worse from bed!

We showed her what happens and in fact dad fell backwards (luckily on the bed) she said she doesn't think a hoist will help and would also be too traumatic for dad! So I asked what would work? Her reply just keep doing what your doing!!

Eventually she offered a hoist and mum n dad declined this (probably cos she put them off)

I'm just sick of feeling there's no help out there!

If you have savings of over 23k your screwed! What's the answer? Give your savings to someone else?? I'm thinking that might be the answer.........

I totally value everyone's advice on here just wish there was more help available! I'm getting so angry with occ health, social services and the neuro team because to be honest they just don't seem to understand of offer enough help!!

Moan over, feel better for writing it down


22 Replies

  • Its very frustrating , J has a parkinsons nurse and I am totally dumb founded as to what he is supposed to do it would be more helpful if they offered to wash up when they came round lol.

  • Actually made me lol

    Quite true!!

    We can't have a Parkinson's nurse?? X

  • Ask them what they are able to do. You may be pleasantly surprised. Or you may not. If they are there just to sit with J, make the most of it and go out and enjoy yourself. Our Crossroads sitters will wash up, empty dishwasher, ironing, in fact anything I ask them to within reason but I'd rather them sit with C so I can meet friends or shop....Christmas shopping soon. Some nurses, sitters, carers etc have more oomph than others and use their initiative. Others have to be asked/told what to do. So talk to them and clarify their role.

    All the best.


  • The occupational therapist got C a rise recliner chair, perching stool, handrails in bathroom and up the stairs, blocks under the bed to make it higher and easier to get out of and a handrail on the bed as soon so he was diagnosed. Have you asked for a chair? We now have a house full of equipment and never once have they asked about savings and it isn't connected to CHC. You need the OT to assess him properly. I'd get them back. Help is out there but some counties are better than others it seems.


  • Hi NannaB

    We have the handrails, hospital bed and step for shower

    I'll certainly ask for a chair, we bought one ourselves but it obviously isn't working

    Thx NannaB


  • On the £23k limit local authorities will chase down unusual transfers and any expenditure used to lower your assets, not nice.

    I agree with NannaB you need to contact your local OT either hospital or local authority and ask them for an assessment, your mum does need a hoist and training in how to use it, your dad will appreciate it after a couple of moves without fear of fall. They will also be able to put you in touch with your local councils care and repair service who will be able to assist in any adaptations needed.

    Keep moaning it helps to vent your frustrations and here we all have experienced some if not all of them. If you can get your mum and dad on to the site it may help them understand their situation and that they are not on their own.

    Best wishes Tim

  • Thx Tim

    Really? Would the councils do that??!! Makes me seethe!!

    Agree with what you say on the hoist, thx u x

  • Sorry to say yes local governments chase easy money and checking bank/ building society records for 2 yrs is normal as part of assessment for social services care. If they think you had over £23k in assets and squirrelled it away elsewhere they will chase it.

    Sorry to say from their point of view they have a legal duty not to waste taxpayers money, and as Gordon Brown used to say prudence. It means there is no standard policy across the country and whether you get help is a post code lottery depending on the council as well as the social worker. Only thing to do is appeal and keep making a nuisance.


  • Hi, I understand your frustration and anger. I feel this EVERY time I have to deal with anybody!!!

    Nobody, but nobody, will actually tell you their job and the benefit they can give me. How can I ask for their help, if I don't know what their role is?????

    If you have more than £23,000 in assets (not including your home) then, you have to pay for any social care. Equipment needed to help, seems to be free! Well, on loan! There is a funding called CHC, which is meant to cover social care needed if you have a life limiting disease, I.e. PSP, but it's hit and miss whether you can get it. I got it easy, but others, in far worse state than my husband haven't! There is a certain language they use, which us mere mortals have no idea what they are talking about! I was lucky, my sister understands it.

    Life with PSP is a huge battle, most of the professionals have not even heard of it, although most will say they do, but it's very easy to spot the ones who are lying, but unfortunately, that makes them very difficult to deal with!

    The old rule, "those who shout loudest, get heard", is very true. I'm afraid, you HAVE to shout, scream, kick, anything to get heard. It's not nice, goes against the grain, but has to be done! I am a totally different person now, having had to fight for everything for my husband. Which is making me feel very resentful and hating the world we live in.

    Are you in contact with your local hospice? This is a huge MUST!!! They ARE the only people who care and are helpful, in my experience! Please don't put your hand up in horror, they are there to help people LIVE with life limiting diseases! Find out which is your nearest one and get your GP to refer you ASAP!!!! I promise, this will be one phone call, you will NEVER regret making!

    Lots of love


  • Awe thx Heady

    Re the chc we had the assessment and got nowhere, there is so much criteria to meet!! God only knows who the idiot it that wrote that process?! Clearly someone that is clueless! Pleased you got it though, well done!!

    Now I will research hospices although that sounds a lil scary but I'm gonna google now so thx again

    Big hug x

  • Heady

    Just looked at a local hospice

    Can I really get dad a referral through the go

    I thought hospices were for when near end if life?

    Thx in advance x

  • NO WAY ARE THEY FOR THE END OF LIFE,!!! That is such a SMALL part of their work. S goes to a day centre, he is on a 12 week course. Once he can no longer get anything from it, they will stop! I have been on a Carers course, which helped me understand my feelings and how to cope. They have OT, a community nurse, loads of people who can help NOW!

    Of course, they will there at the end if you need them, but it's now, you really need their help.

    S was at hospice today, going in to pick him up, it's like a breath of fresh air. The staff are helpful, welcoming, had a small problem, so I discussed it with S's nurse, feel much better now. No having to deal with some jumped up little boy (S's GP) who know nothing about PSP and can't be bothered to read up about it!!!

    S loves going to the day centre, of course the people who go, are the wrong side of 50, but it's definetly not a "waiting room", S's give talks on various topics concerning their illnesses, how to cope etc., it is run as a course and you leave when it's over. But its a reason for him to get up and go out WITHOUT me! And I get a day to myself ahhhhhhhh!!!!!!

    A word of warning, our GP, whispered to me, that they were for people dying with cancer. Thankfully, I knew better and was able to tell him to refer us!!! You know now, so make sure you get your Dad there!!!

    Lots of love


    Ps. Hopefully others will pick this up and back me up, if not and you are still doubtful, post a question!

  • Omg thx you heady!!

    I really didn't know any of that!!!!!!

    Why the **** don't the neuro team, oh, social services etc tell you these extremely important and vital things??!!!!

    I'm awaiting an appointment with cab as I want to claim carers allowance as have packed my job in to help care for dad

    I will without question be visiting the hospice between tomw and Monday pm

    I seriously cannot thx u enough



  • Just to reinforce what Heady has already said - the hospice is wonderful! D goes once a week to the day centre and likes going. There are people there with a variety of life limiting illnesses (not just cancer) and D likes the company; the caring staff and the lunch! There are activities for those who like to take part although D is unable to participate in much now. He loves the PAT dog when he comes. It is a lovely bright upbeat place and it gives me a few hours off.


  • Be careful how much you give at one time! But yes. We do not have the same problem as you ($$) , but we do have a house (oh and that dog haha)

    I don't know what to do.

    And that there is so little experience by the med profession. They can only help with the symptoms, like stitches or rehabilitation. I think it sad that I have to pay for first aid classes which, on the long run, would reduce the cost in medical care. If I felt confident in helping (anyone) Bruce with an emergency, I would not be so apt to call 911 or watch him choke to death! His nurse called and actually stated that they would pay....if I could find a class....that took insurance! You must be in UK, you mightr talk to GeorgePa and others having some sort of sour experience, maybe you all can write a supplement to their laws which included PSP needs

    Goodnight...sleeps's closing in!


  • Re the £23000 savings; having that does not mean you have to pay full price for everything! Many aids you don't pay for and some you pay a nominal fee and some things like carers are paid for on a sliding scale. Don't be put off enquiringly. OTs can be very helpful.

    Why have you got a rehabilitation nurse - they are used to dealing with people whose symptoms are going to improve and sadly that isn't necessarily the case with PSP

  • Ok I didn't know about the carers fees on a sliding scale, another thing to google, thx u!

    Yeah good point about the re habilation nurse, I think it's to save the physio coming round! Perhaps i should be asking?? X

  • Have you had a financial assessment done for your dad? Paying for things is based on what is left each month after paying out for usual expenses. But you can get extra allowance for extra washing loads. Can't remember all of it as it was a while ago. I have gone through 2 financial assessments for 2 different people in 2 different Authorities. Both people were helpfu and thoughtful and not at all prying or scary.

  • No

    I don't think a proper financial assessment and I certainly didn't know about extra washing loads!!! The washing machine is in constant due to constant wet clothes

    Thx u


  • Something that the Neuropsychiatry nurse who comes to see my husband made me realise, when I told her that I found it difficult to keep on at the OTs to get things that my husband needed( it made me feel as though I was being a nuisance) was that, I am my husband's advocate and I have to talk and act for my husband because he no longer can.It helped me to be strong in will and not to just except things and struggle on as I sometimes did.

    D x

  • BTW the value of the house is not taken into consideration for home care.

  • I'm not sure what a rehab. nurse is expected to do but the key to getting the equipment I needed, even before I knew I needed it, was an Occupational Therapist. If this is a 'post code lottery' issue I may have had the winning ticket!!!!

    Have you approached your local hospice? They do so much more than end of life care and have all sorts of local knowledge regarding how to access help and, equally important, who in particular to contact. At least that was my experience.

    Best wishes, for a fruitful outcome, Jerry.

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