Dealing with a bad diagnosis

[kitten_uk2]

Hi there, my dad was diagnosed with motor neuron disease on mon. im finding it very difficult to keep my mind off the subject and keep crying about it. im only 28 and my dad is only 61, to know im gonna lose him before im 30 is killing me. id let peoples views on how they were after a bad diagnosis. my sister is total oppisite to me. and i feel im really taking it badly.

[jackthehat]

I'm truly sorry for the shock you and your family have received.

Please contact http://www.mndassociation.org/
and they can help you with any questions or reassurance which you may need.

Chin up, love. x

[LoftyLottie]

I lost my dad who died from a brain tumour when I was 33 and he was 63, so I understand how devastated you feel. Everybody reacts differently so please don't worry that you are taking it badly. I, for example, dealt with it brilliantly for the year we had with him after diagnosis and totally went to pieces when he died. Because my Mum went to pieces the minute she knew, I suppose I had to be the strong one.
Mum dealt better with his actual death than I did.

Some people tend to grieve before the event which is what you are doing.

Give your Dad lots of cuddles and be there for him to chat to. Let him know how you feel as well if you can and if he wants to talk about it.

Do you know something. That last year I had with my Dad was one of the happiest in some ways. We were always close but it brought us even closer and we talked and talked and talked about absolutely everything. Lots of laughs and lots of tears.

Take care
xx

[daisycup]

I too understand how your feeling. I was 17 when my mum died and she was only 48. She died from cancer but at the time I didn't really understand how serious it was and my mum and dad never told me it was life threatening. I really regret not being told as I feel I didn't get to say and do everything that I wanted. Due to that its had an effect on me still now coz during your teens your not a very nice person at times. All I was interested in with going out with my mates etc. So, if I was you.... say everything and do everything possible with your dad. Enjoy the time that you still have together and regret nothing. Take care xx

[4getmenot]

I cant imagine at all what you are going through. I have never lost anyone as close as my mum or dad but I would be devastated. Unfortunately most of my mates have lose one or both parents, some suddenly in accidents. I know it must be hard but at least you know you have time to say your goodbyes and to make sure he knows how much you love him. xx

[888sally888]

My dad died when I was 40 (4 years ago) and I can understand completely how devastated you are feeling.

I can only send you my love and a hug and would just say make the very most of your dad - say everything you feel good and bad. Just before my dad died he said he loved me and couldnt have wished for a better daughter. This means so much to me even if i am typing and crying even now.

Deal with this in you own way - however feels right for you x

[catcuddler]

i have just found out my dad has progressive supranuclear palsy.he was initially dianosed with parkinsons disease as the symptoms can b very similar.as i dont see my mum he is all i have left and he probably has 5-7 years left 10 maximum.i am 25 so could lose my dad when i am 30ish so i sympathise(my dad is 57)just make every day count and so something special for him every day.if you go to peices you go to peices everyone reactes differently.dont let any1 tell you to be strong or pull yourself together you deal with it in your own way.say everything you have always wanted to say to him now and take small comfort in the fact you can tell him the above before its too late.i hope your dad has as nice a life as possible.good luck with the future in all you doxx

[boogieboogie]

I haven't had any parents since I was 17. I've just got on with things as you will do also. It's a very sad time for you and this is probably the worse time, people are different and it may help for you to talk with people experienced in bereavement. (many organisations searchable online) even though he's not gone yet it may help you.
I don't know if you will still have a mother and can only spk for myself but having no parents has never been an issue really except at times I can feel somewhat ungrounded, having no one on earth I kind of feel up in the clouds for the most. It natural and painful to grieve and maybe that process has already started for you.

[Eve]

It must be an awful time for you.

Maybe try and switch your energies in to planning what you can do before he passes on, obviously depending on and with taking into account current and future incapacity.

See what he wants to do and help him achieve it with some great surprises on the way.

Maybe there are things he still wants to do you could help look into to see if you can make it possible or people he wants to see, maybe a reunion party depending on he would feel about that.

Plan the best birthdays and Christmasses possible.

Maybe make with him a scrapbook of his life so you always have that to keep and remember him by after. Put in pictures and memories and maybe get in touch with people from his past. Maybe even make a video of things so you can remember the good times you can still have.

Maybe even get in touch, now or later, with fundraising organisations or do something yourself to raise money to help others with similar conditions.

I will be thinking of you all xxx

[curiosity]

I understand how you feel, my mam died of motor neurone disease when she was 66. She didn't really understand the diagnosis at the time, and my Dad clung to the belief that it was "the starting of motor neurone disease" not wanting to think about the reality. Me and my sisters like you were heartbroken, but had to stay positive for Mam & Dad. Obviously we were devastated when she did die, but we had spent lots of time with her, knowing it was precious, and this really helped us deal with our grief and feel comforted that she felt loved and as happy as she could be in her circumstances at the end. She is still very much a part of our life now. I wish you and your family all the best in dealing with this, and think in these bad times your Dad will be proud and thankful that he has a daughter like you and a family like yours who will be strong and make the most of a tragic situation. When life gives you lemons...make lemonade. Best Wishes.

[jb190281]

Ive not lost a parent, but my heart goes out to you here. My boyfriend lost his father to cancer a few years ago, and believe me, everyone has there own way of dealing with it. It doesnt matter what other people think, you deal with it the best way you can, and i hope you get the support you all need x

[sheribeee]

Hi x i felt i needed to write to you, as my family have been in a similar situation.
My uncle was diagnosed with motor neurone disease in june 1997, he is still alive now, even tho the prognosis was only for him to have another2-3 years.
He has treatment, tho he will not take the treatment derived from blood as he is a witness.
He lives well, on his own, cares for his animals, drives, tho he does struggle with tasks at times and has good and bad days. Things are now getting worse for him, but he is still here and living well.
I know this is not something that happens all that often, but i wanted you to know that there is still hope xx
my mother passed away at 35, i was 15 then, and it was extreamly hard and painful, my heart goes out to you and your family.
do all the things you have ever wanted to do together while he is still well, and say everything that your heart tells you, because you will have no regrets then xx
bless you and your family xxx

[rabbitygirl]

It's hard to understand at the moment, and you need to react in your own way and time, but read LoftyLotties last paragraph.

That's exactly how it was for me and my dad.

I said to myself at the diagnosis of his cancer that I would do my best for him and afterwards, have no regrets. My memories of him during that year are far from all bad. Although we knew what the end would be, it was one of the most rewarding years of my life.

[kitten_uk2]

thank you for all your answers, my dad has the worst type of MND, its in his head, so has effected his speech. i can hardly understand him now. ive always found it difficult to tell my dad i love him, but im going to make the effort to tell him so now, everyday if possible.
my husband isnt very good with my feelings and keeps having little go's at me for crying and says im acting like he is already dead. hence why i thought id get other peoples views on dealing with this outlook.
im finding it a struggle to get through each day now. i just feel so sad inside.

[LoftyLottie]

Please tell your husband that, as I said before, it's very normal for some people to go through the grieving process before a loved one dies. He shouldn't be cross because you are like this. This has come as a great shock to you and we all deal differently with everything life throws at us.

It might be advisable for you to talk this over with your GP to see if he an prescribe a mild antidepressant to help you cope with all this.

Come on here for a chat if ever you feel like it. It will help you to 'talk' to people who understand.

And tomorrow, or as soon as possible give your Dad that big hug and tell him that you love him - you will be surprised how much better that will make both of you feel, and don't worry if you cry in front of your Dad. He will understand, after all you are still his 'Little Girl'.

xx

[curiosity]

reading your post really takes me back to that week when mam was diagnosed, and it's a weird place to be. I remember thinking my other half didn't understand the severity of what was happening to me, he understood the prognosis, but he wasn't experiencing the same deep heart wrenching that i was, and that's because even though he loved her and was hurt, she wasn't his mam and it's not the same pain. He would sometimes get frustrated by me being upset, as if why was I getting upset because it wasn't going to change anything,, and I sometimes thought he was being insensitive, but in hindsight he felt powerless to take away my pain, it's like when a baby is crying and you don't know why and you get frustrated and feel powerless because you don't want them to hurt. My Mams speech was affected first also. I remember going christmas shopping with her and her asking the shop assistant in Boots for some special mascara my sister wanted, and the shop assistant didn't answer Mam , instead she looked at me and spoke loudly and slowly about it, that moment my mam lost some of her spirit and gave me a sad knowing look. But we concluded that how sad it must be to be a rude ignorant person like her and enjoyed the rest of the shopping trip. Mam would never use the printed cards explaining her speech condition, and became fairly passive in shop interactions because of this encounter .

[kitten_uk2]

i want to add that me and my dad dont have a great relationship, he threw me out when i was 23, when he found out i was pregnant (i didnt have a boyfriend at the time). i do love my dad and i feel there is so much unsaid between us. this sunday im going to bite my tongue and tell him how i feel. thank you again for all your answers.x