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my first post. my name is denise

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    #16
    Hi Puddy, from another 1950s baby. I think that you are doing an amazing job of caring for Nigel. Love Lynne xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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      #17
      Hello Denise,

      I know just what you mean about having to do all the jobs around the home, or actually waiting to find someone to help you! At first I used to be saddened about having to lock the front door at night and turn the heating down, which are such small silly things, but Mark always used to do these things. He also used to do all the driving and now he no longer drives. Thankfully I automatically do these jobs now so its not such an issue. I still miss being "looked after" dreadfully though, and with Mark's FTD he has lost his empathy so this makes me sad too. I have recently got a carer companion to come in twice a week to help me, at the moment its mostly just "entertaining" him rather than the personal care, but I decided that when Mark does need more care at least he will be used to someone else helping him. Is this something you could consider?
      Take care for now and speak soon.
      Sue x

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        #18
        Hi Denise,

        Fellow carer/partner

        I did find myself naturally comparing what other people are doing in their lives to me and my partner's situation- a human thing to do I guess, but not even worth the energy. Alot of folk our age are at the stage of getting married and starting family's and regardless of age, with this disease you do have the feeling that you are being robbed of a future that could have been, but starting to accept it

        I've had a few counselling sessions (took a long time to admit to myself I needed it) and after a good rant to a stranger I do feel like a weight lifted off my shoulders.

        Here for you anytime!

        Tess x

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          #19
          oh puddy thanks for your message. i feel bewildered and lost. we live in portugal and do not speak portuguese so i am finding it very difficult when trying to contact hospital and doctor especailly after the virus cancelled all apointments. yes i know what you mean about kindness setting you off and seeing them struggle. i woke up last night in a panic it was the fear of being on my own afterwards. i have a feeling that my husband doesn't just have als/mnd but dementia as well. the thing is it gets confusing where one thing ends and another begins and then everyone says how it is different for everyone. its a lot to cope with. hang on in there we all have each other. xxx

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            #20
            oh sue yes the empathy thing. sue i am sure my husband has dementia as well but as i said to puddy how do we know where one thing ends and another begins? i need to talk to the doctor about it but how do you do that with your husband sat next to you? my husband is still driving and he insists it makes him feel normal. i have to say his driving skills are still excellent. i know i need to take over but i am not keen on a portuguese car on the wrong side of the road but i know i will when i have to. he gets very emotional. sometimes he is very ott and i get really embarassed and sometime i think he is horrid and downright rude. we have conversations that go around in weird circles. sometimes i think i am going nuts. thanks for being there xxxxx

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              #21
              i know what you mean about feeling like you have been robbed. i look at other couples and think they will have each other and when i need someone to look after me as well i will be on my own. in a way i am jealous that he will go first. ok that was a stupid thing to say because how do any of us know how long we have? then i worry that if i should get something or fall down who would look after him? especially as our family is in the UK and we are in portugal. i get stressed about things and don't want to worry him about them. as for counselling sessions that would probably be a good idea but i think they might lock me up (kidding) (then again i might be right!) nice to hear from you xxxx

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                #22
                Hello Denise,
                Im so sorry that you are not sure exactly what is happening to your husband. For him having an MND diagnosis might well mean that he would become very emotional and at times angry and rude. But if youre not sure his behaviour is down to that it could well be something like Frontal Temporal Dementia as this dementia can cause all that you describe.

                A very good source of information is the Rare Dementia Society. There website is https://www.raredementiasupport.org

                It might be worth you having a look at the symptoms/behaviour traits of the different dementias mentioned. There is definitely a link to people who get MND also having dementia.

                Take care. Sue xx

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