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PSP Association
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Respite Day Care Home now co-operating

Thank you to everyone who responded to my upset that the respite home felt they could not take Nigel because he had raised a fist !! I did point out to them on the phone that there would not have been any power in a punch if it had reached a destination and that it was only frustration not mailce, so they agreed to take him on the Sunday as they knew I could not find anywhere else on a Sunday. His agression was to be reported to senior management on Monday. However on Sunday instead of shouting when he became agitated he somehow managed to get up and walk with his frame right up the corridor at the home (this is a man who usually finds from lounge to bathroom at our own home hard work !) so he could see the front drive and then he walked back to the lounge and fell onto his chair. Several bruises but otherwise ok. They suddenly became very co-operative and are now working with me to work out how to keep him calm during the afternoon and what foods he likes that he is allowed to eat etc. No more mention of the agression either. He came home yesterday having had a calm afternoon and he was not so exhausted so his walking was easier and it was good. I am just praying that it will be the same today and that he is now trusting the routine that he will be picked up and brought home each day. I have written '5' on the back of his hand so he remembers by what time he will be picked up, which seems to work well. Apparently this morning when our morning carer took him in for respite, there was another gentleman swearing like mad and Nigel just looked at our carer and she said it was a almost a grin and a wink !!

In the meantime I am getting stronger and more mobile thank goodness. Love to you all and big hugs to help you on this rollacoaster we find ourselves on. AliBee xxx

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Hi Alibee my partner also attends a respite home 3 x a week and I know its great to be able to use this kind of service. I have to get him up , washed, dressed, breakfasted etc and get him to this place 3 x a week and it has become quite exhausting considering Ive been doing it now for over 2 years I think. I was going to ask you how you manage all the time to get him there on a daily basis. Do you have carers come in to do this for you?

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Hi

We have had a morning carer for a couple of years but recently moved and now have a new one who is an absolute gem. At the moment because of my very new hip I cannot get him up and dressed but I do his breakfast and meds before she comes. Normally I would then take him for respite and pick him up in the afternoon. My sister is already on my car insurance as a back up for me but as I cannot drive at present I have added 1 friend and our carer onto my insurance. I have a wheelchair adapted car. The carer now takes him in after his personal care and the friend or my sister pick him up. I pay the carer cash in hand and I know it costs but it is worth it. Are you considering getting any help in? It would certainly take a lot of pressure off you. Love AliBee xx

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Hi yes have been asking for extra help for a while now but nothing seems to be happening forthwith. Wishing you well with your new hip xx

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It’s up and down almost daily. One never knows what the day will hold.

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I agree. I sometimes try to remember what life was like before and cannot remember xx

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I think about the good old days at times as well. Those are gone. Now I’m happy if he has a good day.

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Good to hear Ali...How smart of you to write the "5" on his hand! There is no manual for this disease.. We make it up by the seat of our pants!. Anyway, glad that Nige is getting more adjusted. I'm rooting for him!

Anne G.

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The 5 is really working !! I asked him again this morning and he said knew what it was signified. xxxx

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Great news

Well done getting that sorted out.

Warmly

Kevin

xx

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Oh AliBee,

Glad to hear you’ve settled the day care issue with Nigel.

I’m in a sort of same dilemma this week as the Dementia Day Care Centre my B have been attending in the last 3 months told me they couldn’t take him anymore because they don’t have enough staff to cope with his aggression, recklessness and stubbornness 😩

They did recommend taking him to a care home for day care.

Could anyone recommend a care home who does accept day care in the West Malling/Tonbridge area who has experience with PSP?

I’ve called a few but the closest I got is a 45 minute drive from us.

Mx

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Hi. Nigel is in a care home for respite. I guess there are more staff there than in a day centre. I am so sorry that the centre feel that they cannot take B any longer and I hope that you will find a home and get answers from this site. Adult Social Services should have a list of homes local to you who could provide the care you need. Have you tried them? Love AliBee xx

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