Am I right or wrong?

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.

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)))

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

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.

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.

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.

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?

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

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?

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.

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.

Henetha. I want them to be happy, that is all I ever want for them. I am perhaps being paranoid but the "average life expectancy of 16 months after diagnosis" just sticks in my mind - and that is July 2015. It may well be that I survive longer than that, but my fixation with that month has probably clouded my judgment. Only God knows how it will progress. We will have to wait and see. Thanks so much for your kind words.

willsandco - I agree with merlogran's post. Have your children not grasped the enormity of what is happening to you? Maybe they haven't or are burying their heads in the sand. Holiday destinations will be there for ever. I echo merlot's words 'this is about you and not some jolly to foreign climes' but I fully understand how difficult it would be for your to say something as you don't want conflict at this time. Good luck.

I really think that your children are to some degree in denial. You present a brave and cheerful front; and we do tend to only hear what we want to hear or what we are able to deal with. Even with your honesty and clear messages to them, it may be that they cannot take it all on board. Emotions are in a whirl for all at the moment and it is hard to think straight and do and say the right things.

I share your pain - it would hit me hard in your situation; and I understand the quandary you are in - you do not want to spoil their holiday and the anticipation for the GC, but you cannot ignore your own feelings.

Maybe you could say to them that you are delighted that they have this trip organised and truly want them to enjoy themselves, but that you do have some qualms about it as you feel that you might be nearing the end of your life just at that time. Because you are coping so well at present it may simply be that they have not taken on board this possibility. Do they know that you have this time scale in your mind? - if they did, they might better understand how you are feeling just now. It may be that this times scale is a bit pessimistic, and hopefully you have more quality time ahead of you than you fear; but they do need to understand that this is in your mind.

What a very difficult situation for you - my heart goes out to you. It is very hard to know what to door say in this situation. Here come some hugs, even though I have never worked out how to attach them.

KatyK. They know what is happening. Our younger daughter was in Sheffield with us when the Professor of Neurology diagnosed MND and said there was no cure. She didn't give any indication of life expectancy but all the MND literature says 16 months average after diagnosis, some say 14 months! What she did advise is that we should go out and live every day and try not to think too much about what was to come. Sensible advice and we are following it to the letter! I just think that taking holidays this summer is a bit of a risky business. Maybe they are burying their heads in the sand. But, hopefully, I will still be reasonably active, not bed ridden and on my last legs and I can see them away with a glad heart. I breeze through life usually, just get on with stuff, but this has just chilled my soul a bit, I think. But I am not saying anything. It is younger daughters 40th in 2015. She has had a rough time with a bad choice of husband and a messy divorce and is just coming through. I just don't want to pour cold water on her dreams! Bit soppy, I suppose, but that is how I see it. x

No it's not sloppy. You seem like a truly wonderful lady. My DH has recently been diagnosed with cancer (hopefully to be cured but no one knows do they?). Our situation is nowhere near like yours but sometimes when I speak to my daughter and she is all bright and talking about her life I sometimes think 'have you any idea of what's going on here?' She has but probably doesn't want to think about it. My husband is bright and cheerful all the time and plays it down, so maybe they take their lead from us. If we seem OK at the moment then it must be OK. I hope it all works out for you and wish you all the luck in the world. x

Oh, katyK, I do hope that some good news comes for your husband Miracles abound with cancer treatment all the time. I just want my girls to be happy. I don't want them brooding and getting upset about something no one can do anything about. The sadness and grief will come later - I am all for them taking what happiness they can while the going is good. x

Hello willsandco - my heart goes out to over this as I know first hand how it feels to be in that situation.

Not much that I can add really but I do agree with merlot's and henetha's post.

This is the time to put yourself first <hugs>

Going back to the title of your thread "Am I right or wrong?" I just wanted to say that I do not think there is any particular way that you "should" feel. You feel what you feel, and from your description those feelings are very understandable; so please do not add to your burdens by wondering whether they are the right feelings. They are yours and valid and important. Cuddle up to that nice new hubby of yours and pat yourself on the back for coping so bravely with things that would have made many others sink. You are facing a new problem with this decision of your DDs' - but you have faced worst and will find a way through this I know.

I do feel for you willsandco. My sister was diagnosed with MND at 70. It progressed swiftly and she was confined to a wheelchair way before she lost her speech and had to resort to voice software.... she who was always the chatterer of the family. It would have been ironic if it wasn't so bloody cruel.

But, that's by- the -by. I think like other posters your children may subconciously be in denial. I'm sure my own DDs would be very much the same.You say in your last post you don't want them brooding, so I'm guessing you really don't want to deny them their holiday. I'd want my family to remember me as 'Good old mum' not as a miserable, bitter person begrudging them their chance of a summer holiday because Mum is seriously ill. PLEASEdon't take that the wrong way. I don't think they are being uncaring, I think they may be suffering a lot more than you think, but we all deal with these things in our own way.

Of course, we know nothing of your geographic/ demographic/finacial sitiuation but my two-penceworth is ...don't let them think you're hurt by it, so why not try to organise a 'last' family get-together ?.. A no-holds-barred 'hoolie' as we Irish would say. Something like a long weekend, with all your loved ones. depending on your preferences and circumstances, a hotel or a big self catering place where young and old can spend precious time together. Luxury self catering would be my choice ..... a house big enough for family meals, time to reminisce, to laugh...even to cry, to take lots of photographs so your children and grandchildren have memories to keep forever. But do it while you're still mobile. My DDS missed so much by being wheelchair- bound from the first diagnosis..

Stay strong..

My feeling is that this is an act of defiance on the part of your daughters. Not against you but against the cruel blow that the diagnoses has dealt you. Perhaps their way of saying 'Mum WILL be still with us next summer', thus encouraging you to think of and plan for a longer life span ahead of you. You have had an early diagnosis and are still in relatively good health. Try not to think that you have been handed a 16month sentence and just take each day/month as it comes.

Excuse me if this personal anecdote is misplaced but we will be attending the funeral of one of DH's younger cousins on Friday, who died of a completely unexpected heart attack last week, on return from a happy summer at their holiday home in France. Also attending the funeral will be DH's oldest cousin, who has been seriously ill (emphysema) for many years. Thankfully we do not know what the future holds and must live for the here and now.

Yes, you both are right on so many points. We did have a really good knees up, all of us, at our wedding in April. Since I had the first inkling that I had MND from the first neurological appointment 10 months ago, DH and I have been on the road, covering thousands of miles throughout UK visiting special family, special friends and special places. I thought it was a chance to say goodbye to folk I would never see again but it hasn't turned out like that. Every visit has been tremendously joyful and happy. So we have come home with the most wonderful memories and if God takes me tomorrow, I have achieved my aim to tell everyone I love that I do care about them, today and everyday. So, Absentgrandma, it was a lovely idea but I don't feel the need for a family gathering really! We will just carry on and let the holiday plans progress. I have asked them both today, quite incidentally, if they have got holiday insurance and both ensure me that they have. (I was in the travel industry, so there were no questions asked about the reason for my enquiry!) So if the worst comes to the worst, they are covered. Thank you all for your replies and comments. I have taken them all on board. But I think for now silence is golden! xx

Well done wills - you are a sensible, stoical and inspirational lady. If I wasn't TT I'd raise a glass to you!

thanks everyone. I might just have a drink myself tonight now. It has been good to give this an airing. I haven't discussed it with anyone else and am not likely to. Thank God for you ladies, one and all! x