I understand what you are saying but.....

[linda1scot]

right, ive pulled myself together - was just being weak.

part of what i was trying to get across was that i understand that the carers job is a thankless one at times and is enough to drive anyone crazy with worry, sleep deprivation etc and the agony of seeing your loved one disappear before your eyes over a matter of weeks/years. i know the helpless feeling when caring for a loved one as my husband had a triple bypass (he is 42) last year and i would have swapped places with him rather than watch him go through that and the helplessness i felt at that time.

i certainly dont/wouldnt want anyone here on Tp to stop posting comments on how they feel as that is the whole point of this forum. i hope i ahvent upset anyone.

thank you all so much for your support and kind words. im not usually downhearted and i try to stay strong but i had to say what was in my heart.

Thanks all

Linda xxx

[SWMBO1950]

Dear Linda

You are not being weak no more than those of us who post feelings that can upset you (unintentionally) are being cruel.

We do what we do to ensure our loved one/s are kept safe and well to the best of our ability. We just sometimes find it hard and have trouble coping with the situation.

Please keep posting as both sides of the coin need an outlet.

Good luck with the tests and very best wishes xx

[Butter]

I am so very pleased you have started this thread. And the unfairness of what is happening to you is clear to all . But I want to say - as someone else has - that medicine is moving forward and your future holds out hope in a way that is not true for the people with advanced illness.
I also want to say, especially as I was someone so clearly explaining I wanted my mother to die, that I believe the position my mother finds herself in bears no comparison to yours. Absolutely no comparison at all. My mother could not turn a computer on - cannot read - she is a highly educated woman - she was a professional painter all her working life and when a well-meaning care assistant gave her a paintbrush 2 years ago she put it in her mouth. She does not know her own children. I could go on and on.
My husband, who was diagnosed two years ago, has been working very hard on the assisted dying bill because he wants to be helped to die if that is what he wishes. And he believes the law in the UK needs changing. I realise this is his personal view and that there are people who believe assisted dying is wrong. But my husband wants to be able to die while he has autonomy and dignity and is working to that end. He does not want to go to Switzerland. He does not want to ask anyone to break the law.
I really really know who reads this - and no doubt people have this read to them too - and I hope I have not hurt your feelings anywhere in here. I am simply struggling in my own way the make the best of what happens.
I wish you all the luck and courage in the world.

[CollegeGirl]

i hope i ahvent upset anyone.

Certainly not me, Linda, and I suspect not anyone else, either! That's what the forum's here for, for us all to say what's in our hearts, because it helps us all so much. Take care of yourself because you deserve it.

xx

[Chemmy]

None of us knows what lies ahead and the best gift we can all give our children is to make sure they are free from the guilt that is the cause of so much of the unhappiness you read about on TP.

Very best wishes to you and your family, Linda. You are one brave lady.

[linda1scot]

hi Chemmy

I agree totally re the guilt monster.

there is absolutely NO WAY i would want any of my family to feel guilty regarding any thing that happens in the future. I want my daughters to live their lives to the full and to be happy, well adjusted members of the society. if there is ONE thing that they could do for me it would be to live like there is no tomorrow.

I am not at all brave - im just a normal mum and i guess anyone else in my position would do as im doing and thats nothing special.

Thank you

Linda xx

[chucky]

Linda, you certainly have not offended me. I cant begin to imagine what it must be like to know you have this illness, especially at such a young age. I applaud your bravery in saying what you wanted to say, a lot of people may have thought the same but afraid to speak up. I myself have in the past wished my dad had died in his sleep, peacefully and quietly slipping off to his other world. However, i did have a time when asked if i wanted my dad resucitated, he had slipped in to a diabetic coma and had stopped breathing., and faced with an on the spot decision i said yes please try. Thankfully he came round and has had another 2 plus years. I tortured myself did i do the right thing should i have let him go. Im glad i didnt because hes still here. 7 long years have passed and my dad is still plodding along, happy in his own way, and yes life is hard for him, but he doesnt know that, its us that are suffering the anguish and pain of his deterioration. Life can be cruel, very cruel, and its so sad that you face this, watching your kids doing all the things kids do and knowing you may not see them grown and with families of their own must be soul destroying. I salute your courage and i hope you will use that courage and strength to fight this disease and continue to see all the goals and hopes and dreams for your kids come true. Do you know what even if someone is offended by what youve said, so what. Its your life, your thoughts, your fears and you are perfectly entitled to your opinion. If here at TP we can all help to give you that strength, lift you when youre down, cry with you, laugh with you, whatever dont be afraid to ask. Its a long journey ahead and we will walk with you every step of the way. You should be proud of yourself,well done. x

[Chemmy]

I agree totally re the guilt monster.

there is absolutely NO WAY i would want any of my family to feel guilty regarding any thing that happens in the future. I want my daughters to live their lives to the full and to be happy, well adjusted members of the society. if there is ONE thing that they could do for me it would be to live like there is no tomorrow.

Linda - you have just done your one good deed of the day Gold star.

To all you out there reading this who are consumed by guilt at the moment, read these words of Linda's and please, please, please, take them on board. Your parents, if they could, would be saying the same to you. Mine did, and it's been an enormous help.

[linda1scot]

Can i just say a huge thank you to all who have sent me private messages today re my post.

Your words have meant the world to me.

Linda x

[Izzy]

Hi Linda. Just really wanted to say what others have said before me. It must be incredibly difficult in your situation and I can't put myself into your shoes. Like others here my mum was in so much distress and pain at the end I wanted her to sleep away. I don't dare think of the future with Bill although I know it won't be what we had hoped for. He was diagnosed 11 years ago and though much less independent than he used to be we do live life to the full and will continue to do so for as long as we possibly can.

Thinking of you. x