Said would I stop whilst he "hopped out" and peed at the roadside ! He hasn't hopped out for ages!! So I gave him a bottle and he is clumsy so the car was very smelly. During the night at a hotel I woke to find he'd gone outside instead of into the bathroom. The door closed behind him and he couldn't knock loud enough to be heard. When I opened the door he was on the floor outside the room !
So I'm exhausted. Next morning every-one says how well he is doing . It seems disloyal to say anything. I know I should be happy that he can do what he does but I sometimes feel hidden. Keeping the show on the road is hard work. Jean
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Hi Jean, know exactly what you are describing! Our car often has a "spraying"!!!!! We have to go out and do all these things though. Our lives would be pretty miserable if we stayed at home!
Oh dear. I remember it well. Convene now but still have accidents when they leak or he pulls them off. It doesn't help but you know you are not alone. Sending you a big hug.
Thanks for that. I sometimes feel tired of having to be so grown-up ! Thats always been so but until now Chris was there for me in a way he can't be now and thats hard for both of us. Jean
hi nanna b hows it going I thought it was about time that I dropped me old mate colin a line so hows it going colin ok I hope mate and you have been behaving yourself !!!! that could be a problem mate if you behaved yourself wouldnt it takes all the fun out of life doesn't it matey well the weather here over the pond as the yanks put it is very nice a little bit chilly night and mornings but beautiful days blue sky and sunshine mate that's what we would miss if we ever left Australia but that' s not likely hows the uke group going ok mate nanna b hasn't got you doing the dancing yet then but that will come no doubt well colin I will go now I have to do some work around the place IF I CAN THAT IS MATE so I will say see yer take care now don't go shooting off in your wheelchair will you and BEHAVE give us the thumbs up matey peter jones queensland Australia psp sufferer hi nanna b how are you now ok I hope ive just written a few lines to colin hope you don't mind mate just to stop him going rusty see yer mate take care of yourself and colin
Hi Peter Jones, Good to hear from you. Colin says Hi and put thumbs up when I read your post him. We had another ambulance callout last weekend as he climbed over the bars of his bed and ended up slipping gracefully to the floor. He is too big for little old me to get him up now so two big burly men had to do the job. He wasn't hurt. You talk of Colin dancing. We do the conga every night when the carer and I put him to bed. He holds my hands and I walk backwards and the carer walks behind with her hands round his waist. We all sing the tune to the conga, including Colin. The carer is studying for a qualification and on Thursday her assessor came to sign her off on the handling and communication module. She is a night worker so he was here at bedtime. We did the normal conga routine and he asked if he could join in. We all laughed but he thought he had better not put his hands round the carers waist.....not very professional. The assessor was very nice but he was here until 11.15 pm just chatting. He said the carer would get a good report as it was obvious that Colin liked her and she treated him with respect. She usually calls him sweetheart, like I do, but it only slipped out a couple of times on Thursday. Our son's mother in law and husband arrive from Australia today. They live in Hunter Valley. Jane is English but her husband is Australian. They come for 4 months every year and Neville rarely goes out without a coat, even in the hight of summer. A few years ago we all went to a music festival that our son was playing in. Every one were dressed in summer clothes, in fact many wore very little. Neville wore a thick, fur lined bright yellow waterproof hooded coat all day. It was very funny as people kept asking if they could have their photo taken with him. He got quite annoyed and asked one girl why she wanted his photo. She said he looked like Captain Birdseye who used to advertise fish fingers. I don't know if you had the advert in Australia but Neville has a very bushy grey beard and after it was pointed out, I had to agree.
It's supposed to be hot here today, 18 degrees whey hey!
Take care Peter Jones and stay upright.
Love Nanna B and Colin
👍👍
Hi Jean,
Always amazes me when people tell me how well my husband is doing. If only they offered to come and care for Don for a day they would then realise that all is not as it seems to them with their fleeting moments of contact.
Heady's definitely right- we do have to keep doing 'normal things' like going out and socialising for as long as we possibly can lest our lives become even more cloistered than perhaps we can bear.
Thanks for these responses. I do feel heard here. The next day we had a lovely family lunch, good journey home, enjoying the autumn and singing along to Bob Dylan ! It IS worth the effort. Jean
It does sound disloyal of me but my husband too has good days for other people so I understand your feelings.Every day he has a reason I should phone the doctor if not the dentist.He had an emergency apt with the dentist and then told him he had no pain.Luckily the dentist is understanding and did not blame me,a day when I would have preferred to be hidden!
Jean, I can totally relate. Today at church, we were out of the car going in and my husband just kept going, in his fog. The greeters were there with their hands out to greet us and I had to go chase him down. Not everyone knows there is "something" wrong, and I like you, feel disloyal telling folks who don't need to know. This is rough. Thank God for this website.
I have just lost my post ot you i am afraid and am going oat eat now - a trial for my partner =--as i put too much food in my mouth and eat every meal as if it were my last
mor e late r]
but try and keep the show on the road as you call it
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Another big adventure!
Gp is very budget aware
Finding things difficult.
Has anyone experienced an altered state of consciousness in people with psp?
