Well its all over for the moment. There were only two people on the panel as the Devon County representative for social care did not turn up . However the two other people were both qualified nurses and both had experience of PSP . The meeting was conducted very informally ,they listened intently to everything I had to say and seemed sympathetic and understanding . They went out of their way to make my daughter and me relaxed and comfortable in the situation and asked pertinent and informative questions . They were not happy about the way things had been conducted and said they would be looking into certain aspects of the process .There was an emotional moment in the middle ( you will all be proud of me and Kate as we reached for the tissues ) . It was a very genuine one - I don't think I quite realised how close to the edge I was on the emotion front .When you have to give a very black and white picture of the person you have lived with and loved for nearly 50 years - it is so hard as you seem to be describing someone you don't know- it is so very raw and I had to describe one particular incident which occurred before we even had the diagnosis and it finished me off .All my stoicism dissolved in an instant . The panel seemed to take on board the progressive nature of the illness in that they realised any judgement they made on any particular date would not necessarily be valid may be two weeks later or even a day later . We were in there for nearly two hours and I can't tell how important it was for me to have my daughter by my side - she was so supportive .
Right at the beginning of the meeting the chairwoman stated emphatically that in no way would any budgetary consideration impinge on their conclusions and I believed her . She said it would be solely judged on a primary health care need . She also accepted that that was a difficult concept and caused endless problems as it was not clearly defined .
It will however take them a further three to six weeks to reach a decision and she advised starting a new assessment immediately ( they did ask questions about how things are now and have been since the last assessment was put in .
Anyway ,I do feel the panel conducted itself in a very fair and thorough way towards me - so now all we have to do is wait .
Once again thanks for all your support - by the way they asked if that could have a copy of my notes relating to Needs , Unpredictability ,Complexity, and Intensity -- good sign?
love to one and all .... a wrung out Georgepa
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Georgepa - well done for getting through today. You must be exhausted - it sounds as if it was pretty gruelling but maybe hopeful. I can't believe you have got to wait another three to six weeks though! AND have another assessment!!
I think the new assessment may be a belt and braces job just incase things go against us so things will be already on the move or it may be to work out what level of care V will need if we have got the funding - who knows .
Hi Georgepa ! Though it was a grueling ordeal ( as everything seems to be where PSP is concerned) , so glad to hear that the hearing went well and that the panel consisted of caring people who had some knowledge of PSP ! Also am very grateful that you have the support of your daughter who can also attest to the need for CHC coverage .
Hoping so much that you'll be granted the assistance that is so obviously needed ! Hope that you can get some much needed sleep and that V. Is able to do the same.
Lots of wishes for better days ahead . Take care , Elise
Fingers crossed Georgepa and Kate, I do hope it works out for you.
I'm going through a particularly bad patch at the moment, Keith's mobility has taken a turn for the worse this week, I've just had a real struggle to get him into bed, he was pushing down so hard on my shoulders it hurt and I was frightened we were both going to end up on the floor!
His OT has decided he needs a hospital bed, which is being delivered on Thursday, she's also arranged for the manager of Keith's care company and a social services lady to all come to our house with her to do a movement and handling assessment, she thinks he needs two carers at a time to come now!
It's all so tiring isn't it, I'm worried that I won't be able to cope for much longer, I'm 5ft and a bit and this is certainly taking all my strength, I just don't know what's going to happen next and it scares the hell out of me!
Anyway enough of my rambling, good luck with everything....
Hi Pat, it is frightening when things change for the worse isn't it. If you get two carers don't forget you will be on your own during the day. C had a standing hoist which helped me a lot as I no longer had to take his weight. I hope the assessment goes well and you get all the help you need.
I'm going to start writing everything down now as Keith decided in the early hours today that he would get up and make me a cup of tea and guess what, yes you're right, he went flying across the landing and woke me up with the dreaded falling noise, bump, bump, bump! I jump these days when a letter drops through our letterbox, pathetic isn't it but that's how it's got to me!
As Colin doesn't fall now...whoops! Just remembered last time I said that he dived off his commode......as he rarely falls now, I've got over that awful feeling in the pit of my stomach and the fast beating heart when I hear a noise. Well I thought I had until on Sunday when I left the boys playing table tennis on the Wii. You can't do much damage playing the Wii can you? Wrong! There was an almighty crash and then silence from the laughing, shouting lads. One of them had taken a swing at the "ball" too close to our mantelpiece, shooting my ornaments off, one of them landing and smashing my pottery poppy that was one of the thousands displayed at the Tower of London last year. Oh well, the TV was still in one piece, so we're the boys so it could have been worse.
Same here but a chilly wind. I was going to go outside and paint a garden arbor that's been in our summer house all winter and needs to be erected while we have some sun. It was too chilly so ended up painting a birthday card instead.
Oh poor dainties. Bruce, when he was at his parents, crashed into some sort of pottery thing that I thought was safe on the table next to where he sat. I had cleared off the vases and the bowls, but why I left that planter thing, I do not know.....it was not an antique but mom did buy it a at a special function some 30 years ago.......
Oh well that's the way the dainties crash! "Kids, dogs and old people " That's what my mom used to say about the annoying ones of society......she loved dogs, had kids and was an old person so I guess she knew what she was talking about! hahaha
Funnily enough I have started to do that today, I think it'll help because you tend to gloss over things unless it's written down as evidence! Thanks for the suggestion though! xx
Pat, I am 4'10" on a good day.....98lbs if I can remember to eat. I assist B in his walking everywhere. A belt around him that you hold on to does wonders in helping him stay upward. (I use his shirt pulled tightly around him, same concept)
Even with our small demeanor we are able to control falling 90% of the time... that 10 %, when they do fall, can be assisted or at least better in helping him to his knees and up on his feet.
I say all of this with the fact that B and I are both in our 50's and thus still have enough strength . If your husband has a physical therapist, ask them to teach you how to use the belt (can't remember full name of it) and how to prevent a fall or help him to his feet...... sometimes you just have to get out of the way! Good luck to you....take care of yourself
I am 67 and Keith is 71 so not so young and fit as you!
I will ask about those belts, they sound like a good idea! I can help him to his knees when he's fallen, so that he can get one leg up and push himself up with the aid of a chair or whatever is at hand!
This morning I heard that awful bump bump bump and found him on the landing floor, he had got out of bed and was trying to go downstairs to make me a cup of tea, bless him! Luckily he was right next to to stair bannister and with my help was able to pull up on that!
Oh well, will just have to see what this week brings!
I am sorry to tell you...It's time to make his bedroom downstairs.
Even if that means converting the front room! Also, i just read another site where I suggested knee and elbow pads for her brother who wears a helmet.....not a bad idea....
I know that with age comes a loss of strength so I do hope you get some carers and some good strategies on prevention and maintenance
Well done to you and your daughter - I sincerely hope they come through when they've had their weeks' long think! At least for today, I think you deserve a breather (if that's possible) - rainy, dreary, even chilly out here - so I'll wait for a nicer day to find a post about nature on your walks. Here the mock orange has started to blossom and it's such a sweet scent drawing out so many memories of warm summers, here and in England. Be well xx
Hi Georgepa, you must be exhausted after all that. I'm pleased you actually met the panel and hope the results are positive. I don't know why it should take so long to get a response though. It was good your lovely daughter could give her support.
It's a beautiful day here in Kent so hope you have the same and can get out and enjoy your beautiful county.
Well George, that sounds positive! Helps having people who have come across PSP before. Disgraceful that it is going to take so long, I bet the decision was made weeks ago. Glad Kate was there to support you. I was lucky my sister, who had been at these sort of meetings before, was with me. Sorry it was So emotional for you both, hope the tears did some good though!!!
Phew . Well you done what you can , hope it won't be too long a wait now .
Ours did take quite awhile .
So had you had a sensible more feeling meeting . It sounds a lot like the last one we had . That was a more mature district nurse . She almost put the words into my mouth . I do drag my feet with talking to them about the awful things we need to ,
Please do us a favor, write a book on the meaning of PSP...and in it describe/emphasize the meaning, conditions, of the word, 'Progressive'! Why the medical community cannot wrap their head around this word, I do not understand. But if you could write even just a pamphlet describing what patient and carer goes through from one month, week; day; moment to the next, would be as valuable as a drug that might calm the progressiveness of the disease. I hope the meeting proves successful.
Well done George a. It is so hard to get these things all set up properly. I am in Canada and here things are hard to access too. The biggest problem is getting to talk to the right people. A lot of stuff is up to interpretation it seems. And then you get those who give you a canned answer. It is like they are reading it from a paper. I am glad that you got to speak to a panel. I know how hard it is to be talking about a loved one so candidly. We would rather talk about how they were not how they have become. Just remember that who they are is always your loved one and that they will always remain that as long as you know that. You are on the right track get all the help you can. This site is such a life saver to those in this situation .
You are right it is hard . The panel actually asked me what my wife was like before this illness, they seemed v eryconnected . But yes we have to grab all the help we can get .Good luck to you in Canada .
George and Kate so glad it all went well, hopefully you will get the CHC, very soon, it does get emotional when you talk about your loved one, and you remember what they were like, and all the things you have planned for your retirement, only to be taken away with this horrible PSP, and then you have to fight to get help to care for your partner, and are saving the government millions, why oh why do they do it. They have got a progressive illness, they are not going to get better, for god sake why don't they read up about it. Sending you and Kate a massive hug, and hope to hear so good news soon.
Pat the belt is called a handling belt. Pat I hope everything goes ok for you. Yvonnexxxxx
Seems to be our cry the world over - be it psp or cbd! It degenerates faster than it takes the paper pushers to handle the paperwork!
It is the reason I took my man to his doctor at beginning of May. I could not see how I was going to manage in the week before we were to be assessed for 1 carer to come and shower him.
After the whole of May in hospital, he needs 2 carers, a hoist, a commode, nappies, an
assistsnce eating. Now we have to wait for another assessment to consider what level of care he needs! What further care is he likely to need by time they decide! That DOES make me want to scream! They just don't seem to understand how fast it progresses.
Doctor who diagnosed Parkinsons 3 weeks ago gets back from his holiday on Monday! Guess he might need to reconsider reason for my insistence for neurology consult! No joy for me, but I know I was right. We understand what these conditions are like better than the doctors do - and we must fight to get them recognised, to get the care our loved ones need!
Keep on listening to that gut instinct! We DO KNOW BETTER!
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