Am I right or wrong?

It's only natural that you are upset, anyone would be, I think. They just haven't thought it through properly. I think you are very brave, and I hope they realise in time that to be away next summer is a bad idea.
But I hope you make it long beyond any expectations, willsandco. I had a friend with MND who lived longer than anyone thought. I send you all my heartfelt good wishes, both for your health and the hope that your lovely family soon realise their unfortunate choice of a holiday booking.

Hello Eloethan, you are probably right. They just hope that it will be slow moving although they read on every bit of MND literature that life expectancy is so limited. They know the score, we keep no secrets from them But no, we don't seek counselling support. The first minute we do I will be going to our local hospice for help and support. We are quite upbeat because at the moment I am active, mobile and still relatively healthy. Neither of us are unhappy - just making the best of a bad situation and trying to live every day to the full.

I'm so sorry that you are having to deal with this at such a difficult time, and I'm not quite sure if my comments will help - I do hope so.

Perhaps your children are partially "in denial" - that if they try and pretend that nothing will happen, then it won't. Given that you seem to be such a positive and resourceful person, this may subconsciously reinforce a feeling in them that everything will be OK. Maybe they have convinced themselves that it is unlikely that you will suddenly take a turn for the worse and that, even if that happened, they could abandon the holiday or, if they are already there, come back.

I can understand you being confused and upset but, as you are a close and loving family, I can only guess that they're just not thinking straight at the moment.

Do you and your husband have any counselling support and, if so, would it be a good idea to talk it through with that person - or, if not, your GP?

he knows they are going but he hasn't commented and neither have I. They are not his daughters and he probably doesn't want to rock the boat. I haven't even raised the issue that I might be in a bad way when they are due to go on holiday. I suppose if it was in UK I wouldn't be so bothered but the Caribbean is a bit more complicated. I wont ever speak to the girls about it. I don't want to spoil their anticipation of their holiday for their sake or the childrens

My husband had cerebellar ataxia, which is similar, although it takes longer for the effects to happen. He was having problems with speech and swallowing, and balance for five years.
Your husband knew exactly what he was taking on when he married you, wills. I notice that you do not say what he feels about what you feel. Have you not told him?

They are not on the doorstep, Merlotgran so it isn't hands on stuff but I do hear from them every day and I am very close to them particularly the younger daughter. They both know of diagnosis. MND is such a vicious disease, it is progressively debilitating and can just turn aggressive on a sixpence. I have already lost my voice, my mobility is beginning to be affected so it is getting worse every week. I just really don't understand why they would want to be so far away. But I do understand DurhamJen in that husbands have the ultimate responsibility. Only thing is I have been married less than six months to my current husband. Their own Dad died five years ago. It is a big ask of him to care for me when they are out of the country. I just don't want to upset the applecart - and the holiday is already booked.

wills I agree with Durhamjen, I think her advice is very sensible. You don't want them to be hanging around waiting. If things are bad, they won't go and leave you.

willsandco You must have felt a huge stab of pain when you received such a phone call. Hard to imagine why, knowing your situation, so many members of your family have gone ahead and booked a holiday at the very time you might be needing their love and support.

I think you and your husband are both going to have to let them know how upset you are. There are members of my own family who seem to belong to another planet where holidays are concerned and I don't think it's deliberate thoughtlessness but a kind of 'fingers crossed nothing will happen' mentality.

Maybe your courage is giving them a false sense of security but this is all about YOU not some jolly to foreign climes. In your situation I wouldn't be afraid to plead with them to think again. You and your husband will need them and they have to realise that.

Please don't bottle up your dismay.

yes, you are right, Durhamjen, on all counts. I just wanted someone to say it, I suppose. I feel better about it now. Thanks

Oh willsandco I wouldn't know what to think, but I know what I'd feel - shocked and confused.

Whatever is going on in their minds I'm sure they have no intention of abandoning you when you need them. There must be some explanation or something they haven't ubderstood. That's the only reasoning that makes sense.

(((hugs)))

Just carry on telling them you are happy for them, wills.
My eldest son went to Spain with his wife for Christmas when his dad was really ill. He was back before his dad died.
Presumably they will have insurance just in case they have to cancel.
It's good that you are close enough that they tell you.
Have you been acting as if you are fitter than you really are in front of them?
Husband and wife sign up to look after each other in sickness and in health, not the children.
I am sure you will have lots of carers around you when they are away, and they will come back with better memories than if they had waited to go away until after you had died.
Hope you confound the statistics and are one of the long-lived. 16 months is average, which means there must be lots who live for longer than 16 months.