PSP Association
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The road doesn't end

It's been a long downturn for Neil,I was thinking he would really rebound like he usually does, never to what he was but this time it's just seems to keep going down.He chokes pretty hard on saliva everything he trys to eat, pretty scary.getting pretty close to being double in continent.I did start home care,they came on Thursday and if she is any indication of whats to come I may really lose it.They canceled for the next day already,they want to know what day he would like to shower.I tried to explain to each one that phoned ( 4 in total) it doesn't work that way with him.I will re group and put my boxing gloves on Monday.At this point it may be mentally easier to do it myself, but I have to say I'm getting tierd.

Wine a clock for me.

Dee

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Sorry to hear that you are fighting the Home Care. It might seem easier to not have them, to do everything yourself, but I promise you, it's not! You need that help, those five minutes of peace, when some else is taking over the responsibility. Leave them to it, go out, walk the dog, or just pound the streets. Go shopping, or get your hair done, if you have the time. Make the time they are there, your time. Quite often, I would go back to bed, snatching a hours uninterrupted sleep. Bliss!

Everyone has teething problems with help, at first. Let them do their job, if it has to be their way, so be it. Neil will cope and so will you. That hours sleep, or your hair freshly done, will be far more benefit to you both, than Neil having a shower if he doesn't want one.

Sending big hug and much love

Lots of love

Anne

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If you are having career visits, shouldn't they be showering every day, assuming he wants it ?

I suppose it depends on how many visits and for what length of time they are.

David used to get three or four visits a day, only for half an hour at a time for three of them, but the morning call was for an hour to include getting him up, dressed, showered and some breakfast

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Hi, Dee. I sympathize so much, but can only echo the advice above. Once you get someone in, try to rest while they are there. It was exhaustion that came close to breaking me. You were on this site before me, and have been fighting steadfastly a very long time. You know. I hope the help gets sorted for you. Hugs and love, Easterncedar/Sarah

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Hi, Dee - we’ve had 8-10 different aides for my mom who have covered the full spectrum re quality. I agree with the others though that there are start-up issues to be sure, but make it work for you however you can. I take baths or just run my kids when the less stellar ones come and then escape to the gym, coffee shop or even massages when the (less common but) great ones are here. And I used to turn down their offers to do housework, but recently started welcoming that too! Over time you will learn how to best use any time you’re given. If you don feel comfortable leaving him with them, though, by all means request a different carer (we had one who showed up coughing and said she had bronchitis! I needed her to stay while I picked my kids up from school but came really straight back, let her go home, and then promptly called the agency and said she was no longer going to work. There were lots of other issues with her, but once safety and judgment problems came into play, that was the final straw). Hang in there! Appreciate any little break you get and it will help.

Grace

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My first reaction is to say,but you all don't understand,but you all do.

Thanks Dee

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So sorry xxxx

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I get 2 carers 4 times a day for my mum. I have fought hard to get 45mins in the morning and half hour for other 3. I have gone to head of social care etc. Get what you want and is best for Neil, you know what is best. Don't accept anything less.

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More experienced members than I am have responded, but I add my sympathy, Dee. You must be so exhausted by now :-/. I havent had to call on home support yet. I hope Fraser Health isnt going to be difficult....Good luck!

Anne G.

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Don't leave it too late to ask fo help. I always found, the second I got the help I needed, things had progressed, so more was needed. Another few months wait. I know it's impossible but try to keep ahead of the game, where you can.

Lots of love

Anne

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I was reluctant to get carers in for Ben but couldn't do without them now, we have two carers for three quarters of an hour in the morning to shower,shave and dress him and the two in the evening to get him to bed. I have built up a good relationship with most of them and have quite a giggle with them. There are a few I would rather not have but have to put up with on occasions , I stopped the ones I didn't trust to safely care for Ben by ringing the agency and explaining, calmly, my concerns and they were excluded on their system. Trouble is you are never going to get exactly what you want but generally they are lovely. It takes a while to get used to them intruding on you but once used to it you will realise how valuable that help is.

Love Kate xx

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I can duplicate this exactly , however it is really getting to me. They walk in as told but don't knock, they don't wipe their feet. , they swamp the bathroom floor and wipe it and it's worse than ever. Leave soiled pads in bin in room, , chunk bits out skirting with hoist and shower chair , sit down to write their notes and if they have spare time before next client they sit and watch my tv. One even changes the channel to watch East Enders . Here's the best bit, one even asked me if I'd like a piece of cake cut, my own cake in my own kitchen.!!! When I declined she asked if she could have a slice. I can't take much more...but on the plus side they are nice, kind and caring , Help , I don't know how to deal with the negatives.Have you had any issues to deal with. ?? I don't want to offend.

GW xx

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Thanks everyone for all your on going support.

I think I have been good at predicting what is coming next,if you can with psp.where we live I'm finding out if you are a senior and have a hospital visit someone from health care are to follow up on you to make sure you are capable of taking care of yourself,So when I phone to start home care the gal kept saying why didn't someone follow up,so I think to cover the screw up they put us on a list without a case worker or even finding out his needs.Had a gal show yesterday, did not know she was coming,hey which was ok but he was in the middle of breakfast and that takes a long time.So Monday I'm going to tell them to start from scratch my way,I'll have a information sheets for a hand out.I think I will get them every second day to get Neil use to it and me as well.if I time it right it will be his explosive days if you know what I mean.Sounds almost a little mean.😈

Again thanks

Dee

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Sounds very pragmatic to me! 😉

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