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    Sorry peeps

    Sorry folk’s ain’t been on ere lately, it’s been a hard 2 weeks, trying to settle wife down after latest bout of bad news, hoping to get a 1-1 night carer in place as she’s become more and more scared, frightened when I leave on a night which is so understandable, hope your all ok

    #2
    Sorry to hear its such tough going for you and Sue. A night carer sounds a good idea. You do need to rest and have time to yourself to recover and process things.

    My hubby was struggling mentally and getting quite poorly. So we have come to Wales for a few days to get some sea air and a change of scenery. We are doing very little, mainly reading and walking, but it is certainly helping.

    I hope you get things sorted soon xx
    Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

    Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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      #3
      Your husband sounds a bit like what am going through Rachel as for Sue still a nightmare, had a meeting with chc there still trying to get funding for a 1-1 night carer now I know Sue won’t settle with a stranger as a carer, I said to them pay me at half the price of a agency carer someone who sue trusts 100 percent who’s already doing her last feed her suction her cough assist who helps her with her drinks every day and night as they say they don’t pay family members it’s an absolute joke, sounds a great idea with you lot getting away Rachel I really hope it gives your husband a nice break am thinking of you all xx

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        #4
        Ricky135 yes, I've heard CHC won't pay family members. But you also need to remember you need a break to look after yourself and just be Sue's husband.

        Its not great having strangers look after you but I accept it is something I had to adjust to. I cannot expect my husband to do everything. I'm sure Sue would understand you need to have a break and good carers are a great support and someone extra to share the load with. I hope it gets sorted xx
        Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

        Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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