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robby
24th October 2012, 10:03
Hi there,

This is my first time on the forum and I am not sure whether this post is in the correct section.

My girlfriend of 3 years' father has been recently diagnosed with MND. He was diagnosed in February/March I think, but we found out sometime in August, and symptoms have been visible for 12-18 months. As a result of this, I have moved in with my girlfriend to offer support as I did not want her being alone.

As you would expect, she is extremely upset, and shocked by this situation. We live a fair distance from her family, but we try and visit as regularly as possible (2-3 weekends per month). After each visit, when we come home, she is incredibly upset for periods of 2-4 days, and finds it very difficult to sleep, getting worked up and upset throughout the night. I think it is important to visit regularly to try so the deterioration is not as shocking when she sees him, and also to try and spend as much time with him while she can. At the same time, as mentioned, every time we visit them it results in such sadness, and she cannot go to work due to the sadness.

I find it very difficult being in this position as there is nothing I can do but be there for her. I feel like there is nothing I can say that makes any difference and it is impossible to find a solution to her sadness. I guess what I am hoping for is some advise from the community, about how she might be feeling, how you coped through these early stages and if there is anything I can do to try and help her come to terms with this. Moving in with her took her mind off the situation for the first month, and it seemed to help, but now that is done the sadness has resurfaced. I am not sure if trying to keep taking her mind off it is the best solution, or whether she needs to come to terms with it and there is nothing I can do to halp that other than be there.

Any advise is greatly appreciated!

Thank you.

pete
24th October 2012, 11:20
Hi Robby,

Well as no others feel the need to welcome you , I shall ,and knowing that your not the first to feel so helpless isn't going to help much either ,I would say your doing all you can to be fair its really up the Girlfriend , only she can come to terms with it , and all you can do is just what you are doing ,being there for her , MND is not good news at anytime ,and its not got a great outlook ,so the journey isn't going to get any better , sorry but that is the nature of the beast, but you knew that already, I wish you the best ,you will face it together and hope that your young lady manages to find her way.

pete

roy
24th October 2012, 12:19
Hi Robby,

sounds like you have been great support already,there is a great team of support on the helpline who would be happy to talk to your Girlfriend, sometimes it helps if you can talk about advice from someone outside the family with good experience they are aware that the condition makes an impact on family and friends you will find the number on the main site hope this helps.

best wishes.

Roy.

Graham
24th October 2012, 14:41
Father and daughter need to have a really deep conversation. Daugher has feelings of impending loss and guilt that need resolving. You can be the the catalyst. Life is finite.

ccinjersey
24th October 2012, 16:19
Hi Robby

That's so great your such a supportive, and concerned boyfriend. I am fairly new here also, and you will find great, informative and caring members here, as you can see from the above advice. My dearest friend was just recently diagnosed, I know that helpless feeling and the wanting to do more. I think Pete hit the nail on the head, your Girlfriend is the one who has to come to terms with it. I know for myself, all I can really do is be there for my friend, always.

Good Luck to you both.

CC

poz
19th November 2012, 13:02
hi, sorry i`m late to this - sounds like your doing everything you can and should be doing :)
There is no easy way to get through the grief stages of post diagnosis, your gf will go through a
million and one emotions (in an hour, let alone a year)

I cried so much the first year of getting my mothers diagnosis that I asked for cognitive
behaviour therapy counselling to help me through it. It really has helped me cope with her
emotions on top of my own. Nothing we do is good enough for her and without counselling i would
have taken that personally and not seen it as it really is. The fear of her leaving us is something
i cant get to grips with, and as the symptoms progress its a big slap of reality in the face but being
on here, reading other peoples stories, has shown me how blessed we are to have had 21 months
together after diagnosis.

The people here are so open, supportive and strong - i couldnt have carried on without coming on here
and finding solutions to some of the issues that have arisen. Its a backbone to hold up the sufferer and
the family and carers when the going gets too tough.

Some days im not sure i even believe in a god, but regardless - i do want to say god bless to you.
my love and thoughts are with you

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