Am I right or wrong?

Hi Wills
I admire your spirit in all of this.
I was a lot older than your girls when death happened. I was in total denial even though I knew that my dad had been an invalid for decades and had had 2 heart operations. He had had many operations and illnesses and his deterioration was marked by all the "kit" that arrived for his use. Even when his Consultant asked to speak to me I still thought my dad will come through this just as he had come through so much before. My dad and I were not the types to express feelings but I am glad that I was there with him at his bedside for 48 hours in the hospital when he died. I hope that he was pleased that I was there.
I would suggest that if you are a more talkative family who can discuss things more openly I think you should tell them that there is a likelyhood that you could be very ill at the time they plan to be away. As my father got more ill I was scared to even go to the shops nearby even though I had a car and mobile phone and he had an emergency button which would contact my mobile. I was scared that I would not be at my father's side as he left this world.
I think the girls may be are in denial but I think that they need to know that you hope to have them around in your final weeks and days. I would have been devasted if I had not been with my father when he died. It might be kinder to tell them you think that uly 2015 is not the time for them to be so far from home. Hopefully they will see for themselves when they should not be away from you.
You are being so brave through this and an inspiration for others. Hope it works out for you all.
Sugarpufffairy

willsandco for you. As I have said before you are inspirational. I spend most of my life complaining and whining about my lot in life. People like you are an example to us all. I am glad you have been able to speak to the people you love over the past few months. My sister in law died very suddenly a few years ago at the age 49 (she just dropped dead, she hadn't been ill). My DH always said that it was terrible for the family but a quick death for her and that it is how he would like to go. Now he is unwell himself, he has altered his view. He will hopefully be cured but I know if by any terrible stroke of luck, he isn't, that he would want to speak to the people he cares about.

thank you, Mishap. We are just going out to Newark to friends for coffee. Done washing, all finished now. Birds in garden have new seed down. All is well with the world. Hope you are OK - and a happy Tuesday to you too!

Just sending a good Tuesday wish to you wills.

Jane10, so much of what you say rings true. I love my girls and their families with all of my heart. The younger one is 40 this year and it is the first time she has been sufficiently settled to plan a holiday with her sister. I am so pleased they are all going together. It makes me very happy. But then there is the occasional twinge of pain which tells me that I don't want them out of the country when I could be far worse than I am now or away if I suddenly deteriorate and die. I would not tell them how I feel for the world. I know how much they are looking forward to it. I cannot burst their bubble. They are insured, they can cancel, cant they? The trouble is that I always present this positive, upbeat face to the world and I think they are just clinging on to that in the hope that this cruel disease will be slow moving. But, with MND, you simply do not know from one day to the next. Still, it is in Gods hands and we have to trust in Him. And you are right, completely right about the advantages of knowing you have a terminal illness. Over the last ten months,I have been to see almost everyone who I have cared about in my life, and who has cared about me and told them how much I love them. With sudden death, you don't get that opportunity, do you?

You are a Very Brave Lady willsandco (((hugs)))

How stoical you are willsandco! As others have said, its incomprehensible that your family is planning this holiday timing. I think you`re being so mature and sensible about it. I don't think I could have restrained myself from saying anything or typing anything. I know its an awful thing to say but in some ways you have had a (cruel) advantage over others in that you have had an opportunity to carry out your last visits to places and people you have loved. For others there is no chance to say goodbye.
I`m just writing this as I think.
Sorry.
Surely they wont go....................

I have bulbar onset motor neurone disease, MomandGrandma. It is a progressive, debilitating neurological disease. Every bit of MND literature says that the average life expectancy from diagnosis is 14 months and my particular strain is the fastest moving. There is no escape and there is no cure. And yes, it is deteriorating. I got married in April 2014 and could say my vows. Today, in October 2014 I cant talk at all. In April 2014 I could walk down the aisle. Today, in October 2014 I cant walk down the drive unaided and the wheelchair is in the back of the car wherever we go. No one knows how fast it will go, no specialist knows. It can bumble along, or it can turn aggressive on a sixpence. If the average is 14 months, you have to accept that the statistics say that, or they wouldn't publish it. I am really positive, not down hearted but I have to accept that, if I live into the Autumn and later, I am definitely one of the lucky ones.

Average life expetancy is not a firm number for anyone to make plans around. How many last much longer, how many far less? Why? Did your doctor feel it had been diagnosed early or late in it's progression? How are you currently? Does the disease have a gradual or sudden decline, and what are the markers? Do you have any of those markers?

Wills what a difficult situation to be in. Things must be really hard for you at the moment but please try not to upset yourself with thoughts of your children being uncaring as I am sure this is far from the truth. When people are faced with a situation like yours, no one knows the right or wrong thing to say or do as each situation is different and everyone reacts in a different way.

I am sure their intention is not to cause you anxiety and if you are ill nearer the time they are likely to cancel and be there for you and your husband. It is easy to misunderstand the actions of others and they may have good reasons for booking this holiday, possibly thinking it might make you feel more positive about your own outlook not realising you might think them uncaring. Like other posters I wish you all the happiness you can have in your time together. Take care

wills Glad you feel a little more settled with your decision, look after yourself and please keep in touch with us
Good luck and much happiness for you in the time you have left

Surely it isn't necessary for them to book so early. It would have made more sense to leave it until nearer the time, when they will know how your illness is progressing. It always seems possible to find last minute holidays. As always, I so admire your strength, willsandco!

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

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

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

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.

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..

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.

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>

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

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

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

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.

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.

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.