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Thread: Holidays

  1. #1
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    Holidays

    Hi everyone
    I have asked before about holidays as I wasn't sure about what made it easier,, or where was best to go.
    We still haven't booked anywhere as I'm concerned that Steve gets uncomfortable sitting in his wheelchair for to long. He can't sunbathe as he used to ,I'm worried about how he'll cope on a holiday. I know it sounds selfish but I worry how I'll cope , Steve needs most things done for him now . I just wonder how everyone else copes with holidays,I would have really liked the break and Steve thanks

  2. #2
    Forum Member JAY TEE's Avatar
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    Caljake, I am in my wheelchair all day now and it comfortable. Before MND we used to go on cruises and been on few since. I now cannot walk and talk and my care/wife just off tomorrow for a week in Greece with my sister and in fit days had share in boat there. The last two May half term School holiday we took the family and grandkids to Pine Cottage, Brickhouse Farm, Brickhouse Lane, Poulton Lye Fylde, Lancashire. The facilities are brilliant with full ceiling hoist into bathroom. It few miles from Blackpool and got to top of tower in wheelchair. Best wishes John

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    Hi John
    That gives me hope,I think we're both in a bit of a rut. I've tried to arrange outings for Steve,but he changes his mind at the last minute. I think he's still coming to terms with every thing,I wonder if he's a bit depressed. Sadly I think I've got the same ,I've stopped asking . We have the same routine every day ,washed dressed and watch tv. I don't really know how to change things, he's always thought he was the one to look after the family. Now they're grown he had plans of us going on holidays,and doing things we never could do before. He feels cheated . He feels self concience when he does go out , I'm sorry I've gone off point and rambling . Thank you for answering my question Liz

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    Hi again,I meant to ask does anyone still swim ,Steve thinks he won't be able to do it again. He has an indwelling catheter and will be getting a peg fitted soon ,but even without these as he can't walk he doesn't feel he'll swim again if we managed a holiday ,thanks again Liz

  5. #5
    Forum Member Barry52's Avatar
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    Hi Liz,

    We held a meeting yesterday for pwmnd and take turns at discussing our experiences over the past month. One couple had recently been away and the chap concerned went to swim in the pool as he had done all his life. He had a shock when he found he could no longer swim. Of course we are all different and I can still swim, at least I could when I last tried in February so maybe Steve will be okay.

    I suspect it is also a confidence issue as we often feel insecure about new experiences and new places. I hope you can persuade Steve to go on holiday as you need the break also.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  6. #6
    Forum Member Newbie17's Avatar
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    I can't swim anymore, but I can float on my back with a noodle! One of those long polystyrene tubes things. I can't walk unaided on dry land and even then only a few steps at a time indoors but in the water I feel like I'm reborn !
    So I wouldn't worry about Steve being able to swim or not, just being in the water with some kind of float will be wonderful for him.
    I'd be more concerned about finding somewhere with a hoist and suitable facilities. It's not easy leaving the comfort and safety of your own home, I keep talking myself out of going away again. It's only going to get harder so we all need to go now!

  7. #7
    Forum Member Terry's Avatar
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    Hi Liz;

    I would be tempted to leave swimming alone unless you go to a special disabled session that many public pools do. They also have helpers there to assist to make sure his safe.

    If he has a PEG fitted they might not like him in a pool for 4 to 6 weeks.

    Love Terry

  8. #8
    Forum Member Ellie's Avatar
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    Hi Liz,

    I'm sorry your life has become so humdrum now, as well as trying to come to terms with Steve's diagnosis, progression and all it entails, especially as he has ALS related dementia and other co-morbidities. It must be hard for you both.

    Do you get any time to yourself? Has Steve been referred to a hospice? He could attend Day Hospice once per week and you'd get a precious break. I know he'd prefer not to go, but sometimes needs must... The hospice offers services that would benefit you both - you could talk to a counsellor if you wanted to.

    I'd agree with Terry re choosing a disabled-friendly pool. You'd need to chat with Steve's about a valve plug for his catheter and once the feeding tube tract is established, getting into a pool. As Helen said, even floating supported by noodles and a neck float, if necessary, feels very relaxing and free - he'd probably need to be accompanied at all times, given his mobility issues.

    It'd be lovely if you could both get away for a few days or even a day trip somewhere. I get that he's self conscious - I initially was too - and the best way to lose that is to get out & about! Though I appreciate that his dementia may contribute to his fondness for routine.

    Big hug Liz.

    Love Ellie.

  9. #9
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    Hi thank you so much everyone for getting back to me. I have had a call from McMillan to say he has been referred to them, he has been asked if he wanted cares as well. But he's told them we're fine we don't need them yet. I know I would feel guilty if I suggested him going to the hospice. My sister has been on at me to discuss it with him. I've asked him if he'd let our son help him up the stairs ,he said yes but still asks me to do it. I hope I don't sound as if I'm complaining ,he will ask at times if he's getting to much for me. I always say we'll manage , thanks for the hug Ellie.

  10. #10
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    Hi Liz...I really feel for you. It’s so hard to be a carer and so hard to be cared for.... but you must take care of yourself and your needs!
    I can take care of myself on a basic level but have found it difficult to be cared for! Love Dani

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