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Thread: How do other carers cope....?

  1. #11
    Forum Member Cookewitch's Avatar
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    You're right Debbie, I'm sure that is why he sometimes doesn't bother to communicate as he can't be bothered to do 'battle' with the ipad.

    I'm sure when the doctor from the Hospice comes tomorrow she'll mention a day centre or something similar......there is no way on earth I can imagine my dad saying yes....he might prove me wrong but I'd be beyond surprised. He's a solitary man, always has been, it makes me wonder if he was this bored when he was at his house alone before the MND? At the moment he can still walk, potter in the garden etc, which he has started to do to a degree, but on the weekend it's almost as if he thinks he has to stay sat on the sofa just because I am....if I say he doesn't he'll get the hump and take it the wrong way I've no doubt.

    I just shudder to think what it will be like when he deteriorates further.....like I say....I can't imagine how all you other carers out there do it....you're better people than I am that's for sure! I feel so incredibly selfish!

  2. #12
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    Reply to cook witch x

    Hi cookie witch.. My dad has been diagnosed with mnd and dementia I never want to read about it but today I am and just have to face it and I agree with it ruins everyone's life. I'm glad my dad doesn't Know he has it due to his dementia. I cry everyday all the time I sit with him and just feel devastated.he can no longer speak like your dad and he was diagnosed in April and already gone full speed with it. My dad is 69 but is now walking like a 99 year old man its shocking. I didn't even know what mnd was it took so long for him to be diagnosed. I feel like you how are people supposed to cope its impossible. I watched my mum break her neck Xmas day after falling spent 4 months in hospital with her learning to walk and dad started slurring and we thought he had a stroke but It was mnd.I'm angry and feel down like u your not alone. I hope you gain strength . Your not alone xxx

  3. #13
    Forum Member Cookewitch's Avatar
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    Thanks everyone. Mary, we too thought perhaps dad had had a stroke, but between Christmas and May his speech went totally. MND is a particularly horrid disease. My dad called it 'cruel and sadistic' to the palliative care doctor today.....spot on I thought.

    The local hospice offer counselling to carers, and although I don't feel ready to take that up as yet, it's reassuring to know that it's there.

    We've had some better days with less frustration so things always feel a bit more positive after some good days and a couple of laughs out of dad....I just have to learn to cope better with the bad days.

    Thank you all for your support, it is good to know I'm not alonexx

  4. #14
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    just thinking Cookewitch, if you think your Dad will not want to do things because its coming from you, then how about getting the keyworker to suggest things....it is much more difficult to refuse a stranger......I'm sure if he was able to get out a bit while he can more easily it would be good for his state of mind, and do go for the counselling - you need to talk now...what are you waiting for, that's what they are there for, even if you say very little at the start just get the ball rolling you will be amazed at how it will help you.....it's talking to someone who is neutral and you sort the stuff out for yourself as you talk it through. So many things cost money but the hospice offering this for you, take it and look forward to it....please, you'll be glad you did.
    XXXXXXXXXXXXXXXXXXXXXDebbieXXXXXXXXXXXXXXXXXXXX

  5. #15
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    Hi Cw,

    I suggest you are trying too hard. Dad is content just being with you. Forget ipad and other things for now, just quality time in each other's company is good enough. xx

  6. #16
    Forum Member roy's Avatar
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    Hi CW,

    Take Debbie's sound advice,the councillors will give you tools to help you cope,your right you re not on your own.

    Take care.

    Roy xxxxxxxx
    Good as it gets :-)

  7. #17
    Forum Member Cookewitch's Avatar
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    Thanks again guys. I think you're right about the counselling and I will reconsider it now rather than wait.

    Doing stuff with Dad in this weather is a bit of a non starter anyhoo....the added heat and humidity is really wearing him out. He said this morning he feels considerably weaker but isn't sure if it's just the heat or a further progression of the MND....I imagine it's a bit of both. I did clamber up in the loft last night and got down my fan so he has that blowing today with all the windows open.....cats are slightly traumatised by the fan however!

    We have the respiratory nurse coming this evening to do tests overnight to see if NIV is required now or not. I suspect not as everyone else doesn't seem to think Dad's breathing is too bad. Can't say I agree but his levels when we saw the chest specialist back in June were 'not too bad', so I would imagine his overnight ones will be the same.

  8. #18
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    Hi CW, can suport advice to have counselling. I have had several blocks abd the luxury of someone being there for just you is great. The tools are useful and, after a while, you may fund yourself using them automatically.
    Peter, my husband, has NIV and started it when his breathing was not causing much concern. This decision was based on the extreme fatigue that he was experiencing. Sounds as though your Dad may be in a similar position. Does your Dad enjoy listening to music or audiobooks? if he is new to audiobooks I would suggest a set of short stories. good luck
    Magic

  9. #19
    Forum Member Cookewitch's Avatar
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    Dad listens to Radio 4 a lot during the day which he likes. He does read but mainly they are reference type books on bugs and insects etc. The audio books is an excellent idea though, I'll suggest it when I go home this evening. He has bought himself a DVD boxset of Dragnet but I don't think he's actually watched it yet!

  10. #20
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    ...and don't forget go with your gut instinct, now you are the one spending most of the time with him you know better than the nurses coming in, if you are lucky and they're wonderful which so many of them are that's fine, but if you don't agree/understand with something, discuss it until you are happy...oh and take notes if you can too - it's almost impossible to remember what is said when it is so important!
    keep on keeping on, and telling yourself you're great..because you are
    love
    XXXXXXXXXXXXXXXXDebbieXXXXXXXXXXXXXXXXXXXXX and a long distance hug (it's too hot !)

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