His low moods, generally apathy and quite often his refusal to accept his limitations in the face of PSP ( this last one at least I cannot deny him). After several calls to, the
Specialist nurse at the hospital, social worker, the GP and Uncle Tom Cobbley and all, we had a call from something called The Memory Clinic in our local borough informing us that our GP had requested that a visit be made to assess my husband's mental state. Incidentally no one from our GP's practise thought to tell us that they had done this.
A very pleasant lady arrived on the appointed day, asked lots of questions from a tick list - she, in common with most professionals, health or otherwise, had little or no knowledge of PSP, but nevertheless, the visit went very well. She went away with the promise that she would report back to her colleagues, they would have a team meeting and she would be back to tell us what they were going to do for us. Harry subsequently had a blood and urine test to see if he would be able to tolerate any drugs that they suggest.
Today the very pleasant lady came for further visit, another series of questions from a tick list, a very comprehensive summary of the first meeting was left with us , another series of options were made to "get him out of it and improve his mood" the Day Centre etc , all suggestions made by other agencies and declined in the past
During the course of today's visit she said that one of her biggest problems was getting any detailed information about Harry's condition from the GP. I told her that my biggest problem was that during the whole of the past three years, each time we met a member of the "professions" the same series of questions were asked, the same answers were given, no one knew the other person existed, no one knew who had said what to whom and in short, IN THE AGE OF THE BIGGEST TECHNOLOGICAL REVOLUTION OF THE CENTURY THERE WAS NO JOINED UP WRITING.
Later on I read about another blunder regarding the latest computer cock-up within the NHS which was going to cost us billions - certain that it would go a long way to perhaps find a cure, not necessarily for PSP but maybe for some other conditions - and I suddenly thought, that's it, enough is enough, no more questions, no more tick lists, no more being polite to the "professionals" , no more complicity in helping them justify their jobs (with one or two exceptions admitted) from now on We are going to listen to exactly what the neurologist who originally made the diagnosis said, "You have PSP, the NHS can do nothing for you, go home , get all the practical help you can and manage the situation as best you can".
So, with the enormous help and care that we get from our carers, mainly paid for by the Direct Payments, thank you to our very supportive social worker, with the support and love of our family, through our own considerable initiative, from the OT service and from this very informative and caring site, THAT'S EXACTLY WHAT WE'RE GOING TO DO.
Goodbye and if you have been, thanks for listening.
Dorothy-Thompson
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dorothy-thompson
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BUT HOW ? IF YOU SAY THEY HAVE DONE MOTHING UP TILL NOW ? WHAT ARE THEY LIKEKLY TO DO NOW ?
Please be very cautious -we were given this attention from a memory clinic with mum and because they did not understand PSP AT ALL they decreed after visual pictorial interpretation, counting and reading tests (when mum was no longer able to see properly or read) they decreed she had dementia and trialled her on Rivastigmine. They said it had been proven to be very compatible with her dopamine treatment (Madopar).
This was an absolute disaster and completely knocked out the effect of her dopamine treatment which up to then had kept her fairly mobile and she lost the strength in her neck almost instantly and never regained it. She also lost the ability to feed herself overnight and although we had been told we could stop the treatment if there was any ill effect we were not able to stop for several days as the home needed the consultant or GP to authorise stopping! I can categorically state that they completely misinterpreted mum and whereas they thought she had no cognition of what was going on around her from her interpretation of a drawn and very busy picture it was actually a case of mum being extremely limited in her speech and short cutting her answers. They didn't pick up on her witty answers and thought she didn't know things! How wrong they were! Mum always knew everything that was going on around her and learnt new nurses names immediately and could even tell me what their conversations had been but it did take her a very very long time to tell me things! These people really do not have the time to wait for answers and will put down a 'don't know' rather than wait.They asked her the names of roads around the home she was staying in but why would she need to know that? She couldn't get out or write to anyone unless we did it all for her. It all seems ridiculous.
Have you got continuous health allowance . I am thinking of asking but don't want to do it too soon although I continuously care for him night and day .What sort of things do they take into consideration .
Hello, Dorothy - hang on in there, and don't say goodbye. You sound as frustrated as I used to feel.
Here in West Norfolk we have a good Community team who do actually work together - I've only discovered this site since Tony left us, but from all the experiences I realise how lucky we were. I must admit "box tickers" don't really help the situation much usually and you will have to fight Harry's corner for him and "jump up and down and scream" is how I used to put it.
Do you get any respite - for you? Try Marie Curie (I've discovered recently they help not only Cancer but MS, MND etc. and PSP would qualify), the local Hospice if they have a home-sitting service (and the sitters would be qualified nurses), your carers - anything to give you a break and recharge batteries. Towards the end, a night sitting service by the care providers gave me at least one night's sleep a week and, my, did I crash out!
Sometimes you need to take a break from chasing people up, its frustrating, tiring and just hard work. It's taken a couple of months to sort out Direct Payments for my mother, we've had assessments, all kinds of forms to fill in and many phone calls to make. It felt like really hard work sorting it all out and I thought we were there, but no. You need a separate bank account to use for Direct Payment to be payed in, mum can't get to the bank so I phoned Social Services and asked if I could open an account in my name, yes they said, we will send you a form. I filled in the form and phoned them to find out what I do with it, they said they weren't sure, return the form to us and we'll find out. Two weeks have passed and nothing has happened. Last week I felt just like you, totally fed up and wondered what's the point I'm just going round in circles. I do not intend to give up of course, after taking a step back and not thinking about it for a few days I've got some fight back and will be ringing them Monday morning to find out if they've found out what to do with their own form.
Mum attended the falls clinic before she was diagnosed with CBD, from this appointment physio was arranged. When the lady came we had just been given mums diagnosis, I asked her to read a leaflet we were given about CBD. She was brilliant, on her mobile in the kitchen making loads of calls, that same afternoon both OT and social services had rang to arrange assessments. It just goes to show, if the right person comes to see you all the doors open and you get loads of help. We've also had the opposite, the lady from Social Services suggested to mum during her assessment that she should try using a walking stick to aid her balance even though she had just been told mum couldn't use her arms. Another suggestion was to leave the commode in the living room, this would reduce falls, enabling us to leave mum alone. They live on a different planet don't they, we want to stop falls not reduce them.
Sorry for going on, I just wanted to offer a word of support but I've ended up sounding worse than you. Hope I haven't made you feel worse and hoping the right person comes to see you opening up the doors that will provide you with the help you need.
Take care and step back for a few days, then come back fighting.
Please Dorothy, do not drop out now. You are exhausted, misused, only coping because you have no alternative. I know, I've been there. Well believe it or not you are allowed to be ill in your own right! Get an emergency appointment with your GP and confide in him that you are at the absolute end of your tether and if you need someone to step in immediately as your husband cannot be left on his own. It is your GPs duty to alert social services and get emergency care for him and respite care for you. They are legally obliged to do this. They will then do assessments of both of your needs and arrange things to be put in place, but they wont do it unless you make them realize it has come to crisis point and health-wise you are not going to be there unless they help you NOW.
I can empathise with you and the shear frustration that comes about when seeking help. My experience has been one of the OT, physio and speech and language therapist being the most helpful, the OT in particular. Social Services on the other hand do respond, but each time I've had contact with them, they seem to have one objective, to close the case. The last letter which arrived last week asked my husband (who can't see to read and cannot write now) to complete the enclosed evaluation form! Funnily enough there was no form enclosed.
We are awaiting the outcome of my husband's assessment for Continuing Health Care.
Thank you all for your responses, I feel very much cheered by them. It is so good to know how much support there is out there, it's like a warm blanket covering us all.
We are going to have another visit from another professional tomorrow but it's a social worker this time and the visit was arranged a week ago. They must have a surfeit of them here as they are going to send us two, one for me and one for my husband
But to be fair, the social services have been quite pro-active on our behalf so I cannot fault them.
Dear all, don't leave applying for continuos care until it's too late. Apply now and get the process started. They might knock you back, but you need to get everything filled in and the process is long and lots of people need to input, so it can take a number of months. In our area care and sitting can be found via charities such as crossroads, age concern, Marie curie. You need to think hard about all the different charities and phone them all up and ask what help might be available.
I completely agree about the time wasters and lack of help Dorothy, there has been a lot of that. Mum was doing everything and was really worn out until one particular person from the local hospice pulled all the strings. Now Dad gets 24 hour care every day. It's just very sad it didn't start with a little bit of help and then increase slowly instead of the terrible struggle that preceded the help. I do think you need one person to be your string puller. When we were first applying for cc, everyone said it was someone else's responsibility to do the assessments, it was like a hot potato being thrown around. District nurse, doctors, social workers, no one could agree on who should do it, in fact the nurses said dad was only entitled to help in the last 6 weeks of his life! (how do you measure that!)
The absolute deal clincher for dad was when they admitted him in to hospital. They basically refused to let him out without knowing care had been out in place as they were completely incredulous that mum had been coping as dad was a dead weight. They had to do their job and make sure a care package was in place, this meant emergency care put in place within 24 hours. So really don't be reluctant to let them go in to hospital, it might just clinch it!
I agree with you about the "hot potato", I asked about continuous funding care back in January as I had read about the length of time it can take, each "professional" I spoke with by-passed the subject very neatly.
We finally got the assessment 4 weeks ago, completed by the district nurse. It was farsical. Forget all you have ever read on the internet or Age Concern, or Alkzeimer's, about the "domains"' serious, moderate or otherwise. The questions we were asked bore very little relationship to the our "real world". She left saying that she did not think that Harry would qualify.
This morning my husband woke up in what I refer to as his dementia mode. He got out of bed, crawled along the hallway and fell and it took me a while to get him back into his chair. He is moaning and groaning, refusing to do anything and each attempt I am making to help him is met with attempted physical abuse.
It is all very ironic, we had a social worker visit yesterday, not one but two of them, and I was able to tell them that things were not so bad, because that's how it goes, you never know what each day is going to bring, he is so unpredictable. Incidentally you are advised when having the assessment, to say what it's like on the worse possible day, but it's all very clever because the questions are loaded in such a way that you are almost asked to give a "0n a scale of 1-10 " type answers.
I have been referred to the hospice, Macmillan, MIND and they all say that they cannot help us. I do get a very good sitting service and the carers are very good but of course we are at the stage now where, in the old days he would be in care as I consider my husband to be a danger to himself at times and of course me. But we have a whole new tier of bureaucracy now called "care in the community" and we all know what that can mean.
But eh-ho, I'm always told I'm doing a " grand job" - so that's all right then"
Dorothy, its all very familiar sounding. Dad also got told he wouldnt get it and he didn't. Even though he was absolutely helpless. The assessor was pretty honest and as you say, they always seem to get you on a good day, never when its terrible. Mum found that. What are do you live in Dorothy? Seriously, keep fighting for it. When dad was finally awarded the care plan, someone told us how much it was worth and you can kind of understand why they are reluctant to hand it over graciously.
I wonder if you keep hassling them over and over and over to re-review. This time, say 10 every time. I also wonder if it might be worth calling the psp nurse specialists to see if they can write a supporting letter? I think the key thing would be to keep stressing that your husband isn't safe with just your care alone and that you need more than one person to lift etc. They simply aren't interested in the impact PSP might have on you, so you need to phrase it that your husband is at risk of serious injury / illness because of his care needs. If they get a sniff that it might cost them more not to care for him I think it helps and that they might be in some way responsible for ignoring those health needs it gets them listening. Write down all the falls and ambulance calls and keep a diary.
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First contact with social workers!
Palliative/Hospice Care Part 2 The Disaster.
