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Janna
21st July 2012, 06:45
Hi
As my husband has only recently been diagnosed with MND I am still trying to cope with my emotions and already need to do almost everything for him as he is unable to move on his own.I really have no problem helping him but find myself constantly worrying about what he is thinking.It seems to be on my mind all of the time and I think I am probably driving him crazy by constantly fussing.Does anyone else do this?I want him to be as carefree and happy as he was before this happened although I know this is not reality.The future terrifies me on his behalf.How does anyone deal with being unable to talk or eat or move or even breathe.Can anyone cope with this.?Until a few weeks ago I had never heard of MND and now I can think of nothing else from waking to sleeping.
Janna

pete
21st July 2012, 10:22
Hi janna,

So sorry to hear that your husbands is progressing so quickly, I do not have any answers to give you ,however in my case ,We made a pact when we knew the condition was confirmed , and said we would carry on as we had always done, this was yet another part of life we hadnt wanted or planned for , Now four years in and despite the lack of speech and the odd swallowing issues that we all have to deal with ,we still do our level best to do what we have too , no blame on either side or do we consider ourselves any less than we where ,but i do know its far worse for my wife and daughter , seeing me slowly get worse , I cannot imagine how it is for them , I deal with my problems as best as i can and try not to ask too much from them as yet, but I also know this will change as things get worse , I dread the day when i am reliant on others as most of the guys on here will agree its the loss of independance and being able to do the simplest of tasks for yourself , So its not only you feeling this way ,rest assured we all feel the same to varing amounts , And yes the future isnt good ,but we have to face it as it comes and do hope you find a way to make it along the road , Nothing about MND is fair ,its just being dealt with something you can do nothing about , As i say I wish you all the best and hope you can find a way of not making yourself ill worrying about your other half , that i think will only make him feel a lot worse knowing its also taking its toll on you , You take care and hope you find a way .

Regards
pete

paris
21st July 2012, 15:27
Hi Janna
My dad was diagnosed in June 2011, bulbar palsy form so cannot walk or talk and struggles to eat, has breathing difficulties. I am, like you, constantly worrying about how he is feeling. The professor at the hospital has told him to write us kids long emails, letters and tell us what is going on inside his head. I am aware of the fact that me and my mom can have long conversations about how we feel and have a good cry but he finds it difficult to express himself - this is partly due to his age aswell - very old school. Not being able to verbalise his thoughts as easily as we can must be awful. I have noticed that he does not seem himself the last few days, does not seem to enjoy anything and when he smiles it seems very forced, a front for his family to think he is ok so we do not worry. All we need to do is keep going and take each day as it comes, like Pete has said carry on as you were before, support him and try and stay strong.

Gloria
24th July 2012, 13:01
Hi Janna, I know exactly how you feel, my husband was diagnosed in May and has gone downhill quite quickly, he can still walk a little, more of a shuffle, around the house, but is very weak in the arms, like your husband he hates it if I fuss too much. We are trying to carry on as normal, but it is very difficult because of course things will never be 'normal' again. Like you I think of nothing else but the future and that frightens me so much, take care.
Gloria

magic
24th July 2012, 17:24
Hi everyone and I am sorry that you are having to cope with this unpredictable but iinvasive condition. my husband was diagnosed before Christmas and, if it is any consolation, I do not look at the whole picture all the time. I am on a mild anti depressant and have has some counselling. My husband sings in the sower very morning and, although he is very frustrated by lack of energy and reduced hand function. Insists on tackling challenges. Please do use all the support that is offered and this condition is too much for any individual carer. is hissing you strength and resilience.

magic

EMT
26th July 2012, 08:54
Hi Janna. My wife recently passed away from this horrible disease after a relatively short period. As magic says you need to get all the support you can to help with, and for your husband, do not wait to contact these agencies, or get your MD to contact the local services such as specialist physio,s usually macmillan trained, the macmillan nurses for your area ,Marie curie nurses via the local community nurses for night sits . The local council Occupational therapy teams for equipment , your local hospice if you have one near, as hospitals in my experience had no idea how to deal with special needs that mnd sufferers require. The hospice were also really helpful in getting NHS continuing care sorted out for my wife which meant we had free daily healthcare visits to help with my wifes daily needs. You will not be able to do this on your own.......I had the support of my family , friends and all these and it was still difficult at times. Above all try , and this is very difficult, to be as normal with your husband as possible. wishing you all the best in which will be trying times.......try not to give in to this bloody disease

Steve

kazzik
26th July 2012, 13:38
I worry about my partner all the time , i worry if he is ok , how is coping with this , what would i feel like if it was me , i worry about him being so strong and calm when suffering so much , i worry if he coughs , if he may fall , if sitting down all the time is uncomfortable, how well he is sleeping , are the carers doing there job properly , i worry about what he isnt telling me , what he is telling me . MND takes over my whole thought process too so you are not alone in that . I hadnt heard of it either until damon was diagnosed and oh my god what a terrible thing this is . I cant even describe the emotions i am feeling there are just to many ...cant talk to anyone face to face about this i just cry . Its not me thats suffering this so who am I to moan about my own feelings ...thats how i feel too. Its all so unfair
karen

Chrissey
30th July 2012, 21:40
hi Janna my husband is also suffering with this dreadful disease. you will have all these emotions,, anger, fustration, resentment, guilt but these are all natural, i only thought it was me, but talking to different people they are very common..It is very hard watching the one you love go through this, but you will get the strength to cope, my thoughts are with you Janna God Bless

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