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my first post. my name is denise

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  • Sue1
    replied
    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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  • denise
    replied
    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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  • denise
    replied
    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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  • denise
    replied
    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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  • Tess
    replied
    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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  • Sue1
    replied
    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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  • Lynne K
    replied
    Hi Puddy, from another 1950s baby. I think that you are doing an amazing job of caring for Nigel. Love Lynne xx

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  • Lynne K
    replied
    Hi Denise, no apologies necessary as others have already said. It’s perfectly understandable how you describe the emotional roller coaster that you are on. If it helps in any way at all then vent on. Big electronic hugs, love Lynne x

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  • Puddy
    replied
    Denise - I see myself in you. I miss my husband doing the little bits of maintenance around the house and garden. It's tough physically as well as mentally. I'm 67 so no spring chicken. I can't bear watching Nigel struggling to eat and often choking on his food. He is also so uncomfortable sitting in his wheelchair that he goes back to bed at lunchtime. I cry every day, at acts of kindness as well as despair, so I identify very much with you. Look after yourself as well. xxx

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  • Deb
    replied
    Oh Denise, Please dont apologise for how you are feeling. You are dealing with the loss of the future you planned together as well as watching the man you love struggling. It's not surprising you feel so bewildered and scared.

    Also please dont think you have to put on a brave face on here. The forum is a place we can be honest and open because, as Ellie said, people really understand. It's fine and understandable to let out your feelings, better than bottling them up .

    Take care of yourself,
    Love Debbie x

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  • Ellie
    replied
    Hi Denise.

    I just wanted to say that your emotions are entirely normal in the circumstances, so please don't be hard on yourself. I recognise my husband (my carer) in everything you said.

    I cannot imagine how tough it is to see Steve change so much, both physically and emotionally, and to know that the future now looks very different to what you both had planned - you will get through it, it's surprising how we find inner strength when the chips are down.

    Please never think that people here will "avoid you" if you "go on" - this is where others genuinely understand what you're going through, it's not just a, there there my dear, kind of lip-service...

    Sending you a big hug.

    Love Ellie.

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  • denise
    replied
    hi lucy
    its nice to know you are there and the same as me. i worry that if i keep on then others might start avoiding me. i have looked at other posts on here on different subjects and i know we need to know some of it because of what is to come but it did make me feel worse. actually terrified. when my husband complains of things now - the problem is mainly in his hands and his arms shaking and the tiredness. in my head i am thinking of worse scenarios and i want to scream. but i just try and help and reassure him. then i hear people complaining of stupid things and i feel like saying well aren't you lucky that is all you have to worry about. i am glad they cant hear what i am saying in my head.

    denise xx

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  • denise
    replied
    thanks for the welcome. i am trying to get my husband to get involved with the site. i have helped him with afew messages. he isnt very good at putting his thoughts into words.
    i suppose there was that time when i left the hospital with my son thinking what am i doing. i don't know a thing fancy letting me take care of this little devil. well him and my daughter survived my care from birth to adulthood so no doubt i will find the strength to do this - its just that feeling of doubt that must be in all of us.
    denise

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  • denise
    replied
    hi sue thanks for your message. i couldnt understand the anger. it didn't seem fair to react like that but when i am trying to get on with things and he wants me to do this and that and i respnd in a way i am ashamed of. i can do it most of the time but sometimes........ i suppose we have gone from sharing to just me and as i am getting older i miss that person that used to do the blocked sink and the garden and the heavy stuff. now i have to figure out how i can do it or who can i get to help and then i know he will be upset because this was his role. yes and as for crying. i went from not being able to and now anything will set me off.
    another thing i guess was true living everyday as it comes was alright for a while. we are trying to make the most of each day but the tiredness makes it difficult. i don't want to push him into doing something he doesn't want to and he wants to do it because he doesn't want to let me down.
    he is also taking the attitude that he doesn't know why he is bothering if he feels so bad. what is the point of being alive and how long do you think i've got? i want to make a joke of it and say well none of us know how long we have and hey you wont have long at all if you are not careful. but in my heart i am crying.
    sorry
    denise

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  • Lucy
    replied
    Hi Denise

    I also care for my husband who was diagnosed last year, sometimes it just helps to get it off your chest, especially with people who are going through the same. My emotions are all over the place at times also but it's allowed and you are not alone.

    Lucy x

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