View Full Version : dont know how I should be :/

23rd December 2013, 21:27
Will try and make sense...my dad was diagnosed last week with mnd and it felt as though our world had crashed down- I am 1 of 4 children amd we are all devastated but leaning on each other alot for support which is good. At the moment my dad just has weakness in his arms and hands and is still going to work every day and pretty much carrying on as normal which is great. But, it is very hard to know how to behave around him- he is carrying on as normal when we are around and so what I would like to know is should we all just be as we always habe been around him or should we in some way 'acknowledge' his diagnosis? We all want to visit him loads to show our support but I think we are actually getting a bit in the way of him and mum hust ' getting on with things'. I think it is great how they are dealing witj things at the moment but I know my sister feels that my dad should want us around more as we want to spend as much valuable time with him. It is a bit easier for.me.as i am quie a distance away so not poppi g around as much as my siblings.
Sorry for the ramble but i suppose i wonder if we should rally around or , for now just carry on as normally as possible?
Thanks xx

23rd December 2013, 21:33
Well there's no right or wrong answer but, if it were my dad (my dad does have MND by the way, then I would carry on as normally as possible. You all know the diagnosis and as and when things start to change then you can change your response too.

Just be there for your dad as and when he needs it, that's the best you can do. Maybe the extra attention may make him feel more worried as it focusses his attention on the diagnosis rather than him if that makes sense...?

Either way your love and support will be invaluable and I'm sure if you play it by ear you won't go far wrong x

23rd December 2013, 21:40
Personally Malteser, I would sort of carry on as normal, perhaps visit slightly more often. Speak to your mum and ask her, and tell her that you are there if things get worse or she needs a hand. I am no expert in this type of thing.

Best wishes, Terry

23rd December 2013, 22:12
Thank you for your replies :) I travelled home on tuesday and am.planning on trying to get home more often but I didnt want to suddenly go from seeing them 4/5 times a year to being there a couple of times a month. My mum was very pleased to see me and thankful that I had gone home to chat rather tham doing it over the phone but my dad was...well...just the same as usual apart from surprised that i had travelled 4 1/2 hours instead of just phoning :D Will chat to my mum when i am home next x

23rd December 2013, 22:16
Hi malteser. Like cookwitch and terry say no right or wrong way we do as much as the normal things as possible at least i think they feel they are in control its not easy. Some days my wife tells me to leave her alone as she tries to do things because as she says she wants to do as much as possible so i stand back a little then she decides when i help her. Regards gerald

23rd December 2013, 22:56
Thanks Gerald. It is such a confusing time. I think my dad would likenus to carry on with our lives as much as possible as that is how he has always wanted it to be - my parents have never 'interfered' in our lives and decisions and my mum and dad have always been such a strong and madly in love with each other unit that i think it would be strange if we all suddenly started being there all the time. However, I think as long as I stress that I am always here for them in whatever capacity they need me to be it will be a good starting point and we will take it day by day. I really appreciate all rhe replies as I just really want to do the the right thing for them without intruding as it were. Xx

23rd December 2013, 23:14
My advice malteser is be like your Avatar – keep it light and bubbly – don’t dwell on what’s to come and don’t overdo the visits as your time will come later and you need to be fresh and resilient.

Don’t let distance figure in how you get involved as you can do your bit getting things moving over the phone when help is needed.

Right now – have a happy Christmas.


23rd December 2013, 23:21
Thank you Panda, you have all helped so much- I think the distance is the reason I have joined the forum when the rest of my family havent yet felt the need but I feel at least I can keep well informed to offer help and reading the posts on the forum has really helped as although I have read some sad and frustrating posts the overall feel of the forum has been welcoming and positive and I take great comfort in that.
I will have a lovely christmas with my boys and I am actually really excited about spending new year with my parents as I havent since I moved away :) Hope you all have the best christmas possible xx

24th December 2013, 15:15
Hi Malteser,
Some sound advise from our fellow forum members but I would like to add that your father like me will want to retain as much independence as possible for a long as possible even though this can be frustrating for those around you who only want to help. Simple things like opening screw top bottles can become a challenge but our stubbornness to fight this disease keeps us going.
Please bear in mind that personalities of the person with MND often change and some tolerance is required by loved ones. This is not an excuse for bad behaviour but irritability born out of frustration is an example.
Have a great Christmas and for the time being put MND to one side as I'm sure your father will.

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