Done correct today

[jzygirl]

After the escapade of our bus trip last week we just had to try it again this week and it was a success. Of we went on the bus Brian installed correctly so it was easy to get him off again. Well done us. So what shall we try next.

[Heady]

Depends on what you do when you get to where you are going on the bus!!! Try a bit further, stay a bit longer, anything to keep you out of the house. Brian must feel like a new man. All this new simulation, it's great for him.

WELL DONE,!,!!! Keep it up, your mood must be a lot better as well. I am very impressed, shows anything can be achieved if you really try!!! Lesson to us all.

Lots of love

Heady

[NannaB]

Well done you! You could try a train next perhaps.......or perhaps not. It is good that you can both go out together more now. We have been in sunny Suffolk for nearly a week now, going home tomorrow. I can't get rid of the L plates quite yet as I managed to run over my brother's foot with Colin's electric wheelchair. He pretended it was not too bad but knowing the weight of the chair, I think he was just being kind to me. I am getting better at "driving" it and it is certainly better for my back but the controls are so sensitive I can't quite relax yet. One day maybe.

Keep on travelling.

Best wishes

Nanna B

[Buckeye7 in reply to NannaB]

Just a thought about the touchy controls,when the representative from the powerchair was trying to get a chair prepared for my mother in law, Peg, he said it could be adjusted to make it repond faster or, slower or turn in different ways to make it easier. Peg had CBGD and her thoughts and actioñs didn't seem to work together. .....jan

[NannaB in reply to Buckeye7]

Thanks Jan, that's helpful. The chair we have is on lone as Colin's hadn't arrived from Holland in time for our trip to Suffolk. Hopefully it will be ready for us on our return so I will mention it to the engineer who makes the adjustments.

Nanna B

[cabbagecottage in reply to NannaB]

Hello NannaB .

I believe you said you are now receiving CHC . But at the same time Colin is still able to get out .

My husband John is completely reliant an me and I have carers night and morning . Mainly to help hoist him in and out of bed but everything if I haven't already done it .

I shoot myself in the foot because I do such a great real for him . He has always been a very private sensitive man although outgoing and he likes me to tend all his bottom half . I have to be meticulous because he has very very sensitive skin , having had 87 different carers in 14 months doesn't in still confidence in me letting go completely We don't know who is coming through the door .

This is coloured by how much and how often his symptons change can have one pretty good day . I say the tongue in cheek he is completely chair or bed bound cannot stand or adjust himself .

Mentally still alert memory excellent , that is until it all goes pear shape and he is completely wide eyed agitated , confused with hallucination . Has a room full of people around him and although asks to use the toilet worries because they are all watching him .

On top of all this he can go a few days like this and I cannot understand a word he says , .

The Parkinson's nurse is calling I today to assess his memory , of course Sod's law it is his one good day . I normally ask him what day it is each morning and sow times during the day . He normally knows , sometimes I don't even know .

Now dementia is quite clever isn't it .

I have started to have a sitter one morning I try and explain how he can be , such as if his eyes start darting around the room it's because he can see people in the room and sometime his words can come out wrong different to what he means . I can usually work it out . Practice lol

She told me he had been great perfect but at the same time he was whispering to me that he didn't have money for the window man , in fact he apwas dreadful when she had gone . Any change isn't good for him so don't know whether to continue having her . I won't be hasty though .

Somedays he he can feed himself for a while and others I feed him but at the same time his empty hands are reaching out and puts it to his mouth . she he cannot taste thinks he has dropped it

The day before he was really agitated , trying to drive the car and having to leave it , then worry about it being left overnight . His head becomes scrambled . But can still tell me what day it is . So complex isn't it .

Can you give me any advice on this case when trying for the CHC .

[NannaB in reply to cabbagecottage]

Hello Cabbagecottage, yes we do get CHC. When we were first granted it, Colin was still talking a bit, walking with help, feeding himself, sorting himself on the toilet etc. Like you, I now have to do everything for him, he rarely speaks ( occasionally grunts an acknowledgement), wears a convene bag for continence and chokes when eating liquidised food (awaiting a date for PEG fitting). We do still go out however. He can stand with me holding his hand and I transfer him to a wheelchair from his rise recliner and wheel him outside. It's not easy and exhausts me but if I ask him if he wants to go, he puts his thumb up.

I don't know what you are like with forms. I was in the civil service when I left school and then worked in a school for 20 years where I spent a lot of my day filling in forms so I downloaded the Continuing Healthcare Checklist. I just googled it. It gives an idea of what they are looking for. I think what swayed it for us was that Colin was still able to get up and would fall, hurting himself, like most PSP sufferers. Again, like most others, he thought he could do everything he used to so put himself in danger. When they sent me the completed form after the assessment, I added lots of comments and listed the times he had put himself and me in danger. Does your husband have any time at a hospice? Staff at our local one were very helpful and also had input. When answering the questions I told them what it was like on the worst days.

I think it is so unfair that some find it is so difficult to get when all PSP sufferes and carers are going through the same or very similar situations.

I think it is worth downloading the checklist. If you look at number 21, it will give you an idea of the scoring system although in Kent it is a panel of professionals who make the final decision .

I do hope you are successful. It has given me a night nurse every week night who also gets Colin undressed and showered and dressed in the mornings and Sunday and Monday morning a carer for half an hour to help me get him up. We returned from a week in Suffolk today and we were given a night nurse there as well. I know we are very fortunate and I don't take it for granted.

Very best wishes. Please keep me posted.

Nanna B

[cabbagecottage in reply to NannaB]

I am glad you managed to get the CHC . Takes a lot of pressure / worrying away .

Do you love on the flat . Unfortunately we have some steps at the front of the house and don't want to move . If when we were younger would have made the effort together , have lived in this house for 48 yrs.

John hasn't been out not even into the garden for about three years he cannot stand even , I am also finding it harder to handle the wheelchair along the carpet. Been very tempted to get a wood floor laid .

We have hoists over his armchair and the hospital bed

One of the biggest problems is having a wee . He is so retracted we have been unable to use the sheath any longer and is he was using pads constantly his skin would be seriously affected . It doesn't take long to break down . I only put one on at bedtime and then he is often dry . When wake I can use a pubic pressure with a bag . I I use this during the day as well unless he is hoisted into the commode .When I go out for while and then put his pad on but remove it as soon as I get home.

I always worked in an office so familiar with most paperwork . It's having the time in between to get my head round things .

He changes so suddenly for instance has been very good for the last three days now , it's the longest he has gone for a ages . Even his speech and posture . a week where he is unable to be understood or awake other than to for the toilet or on the other hand so hyper with hallucination can't turn my back.

We had the Parkinson's nurse visit yesterday she isn't easily come by . Has a very very busy job .

Of course Sod's law she was coming to also do a memory test and he was having an exceptionally good day . I am sure she believes me when I tell her how he has been . He did very good with some of the test even able to count backwards with good volume another time he is whispering ,,,,!!! asked him who was in charge of the royal family etc . I often do these sorts of tests myself with him . Asked wh at year and he told her after a struggle 1900 and guessed at April . . it all became far too much for him . I wish she would come on one of his bad days .

She is going back to ask the consultant if he will try a different med Entacopone . Prob take a while for them to get the prescription which had we been in his clinic would have been written up immediately .

We can only hope it will help but we don't get as optimistic as we use to be because have been dissapointed far to many times he is so sensitive to drugs . But here goes . She said to go ahead and apply for the CHC we can Atleast do that and would be in the system .

When John is in one of his better days he will suddenly reach forward and even try to adjust himself , it's strange because he cannot move at other times . It's when that happens he is unsafe , The nurse did say this if the new med works he might think he can move more than he is able . I watch him like a hawk .Which is why I need the CHC to get the help to give me a longer break with peace of kind .

Last night a new supervisor came with one of the older carers and she was trying nicely but quite forcibly to set myself back let go of him and let them do it . It's already in the plan that while I am able they will do as I request . I don't normally have a problem with the carers we have a hood understand . it's mainly because of his skin that I keep doing it as well as his feeling for dignity . He has never ben a man to expose himself he has always Ben very very private . I know some are not as sensitive . He has lost so much he has to be able to keep control of something's .a which is what he does with me .Iff he is upsets it colours his day . How old are you both , John is 80 and I am 77.

[NannaB in reply to cabbagecottage]

Colin is 67 and I am 63. I find it very difficult so it must be very hard for you. It's all the bending and lifting. It has become more difficult over the last 3 years as I have aged so I really feel for you.

Like you we have steps up to our front door after climbing a steep drive. I acquired a wheelchair adapted car last year, paid for with the disability living allowance, and by backing it up the drive and putting the ramp down, it flattens the drive out so I can get the chair out the back. We had to alter our side entrance and replace our perfectly decent patio doors, taking out a course of bricks and making the threshold lower in order to get the chair inside. I've paid the earth for an electric chair ( money from my dad who died last year) and I can now walk from the house as it gets up and down the drive, something I couldn't do with the manual one.

We have removed carpets and have parquet floors so that has made things easier. When he was sleeping upstairs we took the carpets up and just had floorboards. I didn't have time to sand or varnish, just bought a cheap rug to put by the bed. A big difference is the convene. It's a shame your husband can't use them as it has given us far more freedom. Unfortunately he does pull them off in bed sometimes but I bought Kylie sheets which hold 2 litres of water so only have to change that instead of all the bedding. Colin had terrible hallucinations when he was using patches behind his ears to reduce saliva. He hasn't had any since he stopped using them due to a skin allergy after about 6 months. I find it very hard to leave the carers to it. We are lucky enough to have the same girl from Tuesday to Friday night and another on Mondays so I have confidence in them although I do check his skin when I clean him after he uses the toilet. He has always been a private man as well and hates it if we have a new nurse so I do stay with them. Do you get time for yourself? Colin has 2 Crossroads sitters a week and goes to the Hospice day centre on Fridays so I can recharge my batteries. We don't pay for Crossroads sitters here but I understand some areas do charge.

Do take care of yourself, ( that's what folk keep saying to me ) but it's not easy to is it? I hope you can get the assessment for CHC soon and it is successful.

Best wishes

Nanna B

[wifemo in reply to cabbagecottage]

Hi Cabbagecottage -

The PSP group at Norwich had some advice from the local Age UK (lovely lady, former carer herself.)

Here in Norfolk they are helpful with form filling and advocacy - they are prepared to be with you for any meetings with officialdom.

If they help you with the initial filling in of the forms, they are also able to help with any appeals against decisions.

Worth contacting locally to you - if they do not know the answers, they can put you in touch with someone who may be able to help.

Mo

[cabbagecottage in reply to wifemo]

That's very kind of you all . Thank you , I will keep that in mind .

[jillannf6]

HI JANE

GREAT STUFF1

LONG AMY IT CONTINUE FOR YOU BOHT

LOL JILL

[NannaB in reply to jillannf6]

Hi Jill, I've been away so didn't check this site every day. How did things go with your dad? I hope your visit wasn't too stressful and he knew you were there. I have been thinking of you.

Very best wishes.

Nanna B

[denmob]

We'll done. You stars.

[wifemo]

Well done, Jane - Brian is lucky to have you there for him.

Mo

[jillannf6]

hi i have just appled for CHC via the COMMUNITY matron on the basis that i SHALL need it at some point int he future

we are through the 1ST hurdle and have the big meeting here on 2nd october so wish us luck......

it would be good to get more car e as my partne rdoes not realise that it is a 24 /7 "job" really especially when i still think i na do things and really cannot do anything much 4 myself

lolJ jill

hugs and xxx to you all& the CHC TEAM (WHICH I AM DREADING BY THE WAY)

[Heady in reply to jillannf6]

Hi Jill,

Please, please remember this fund is given out to SAVE the government money, by keeping you in your own home and not have to go into care!

So you are doing them a favour by applying and wanting to stay at home!!!!

No negative thoughts!!!

Lots of love

Heady