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Lolly
22nd March 2013, 01:03
What happened to us was terrible. I don't know how we can believe it or learn how to put up with it. It doesn't make sense that there is no cause and effect or reason for what happened ... There's no patterns or connections to be made because there's nobody we can blame.

I don't understand that there is a belief in the world that people get what they deserve because we didn't deserve this. If people did get what they deserve then we may as well go around kicking blind people as god was already telling us they deserved it. I've realised that what happened to us was a set of completely chance and random events. In some ways this makes it worse..

I don't know why this happened but I know we couldn't have prevented it. All I know is that there there is no fairness or justice in the world and so my whole world concept and everything I was bought up to believe has changed.

There's nothing left for me and dad now mum has gone, but to seek solace in each other and offer comfort when we can to others, when we are strong enough.

I miss her so much

john
22nd March 2013, 04:34
Hi Lolly,

I think we all share your sense of injustice. There was a cause to your Mum's condition but medicine says there are many triggers. It is said to be caused by trauma, injury, infection, stress, surgery. Lots of people have theories about their particular trigger. Irene thought hers came from a fall on ice when she banged her head hard but I thought her symptoms pre dated that fall. To some extent it doesn't matter because once the chain of events has started the whole thing at present appears to be unstoppable. It is just over a year since Irene died and I still feel bitter that there was nothing I or anyone else could do but there is no point in letting events destroy 2 more lives. You have got to treasure the happy memories. If you have got a religious conviction you ought to go and talk to your priest who will offer words of explanation. It comes down to the fact that we are here on earth with a non interventionist god. What happens happens. You may as I do feel that there is no fairness in what happened to your mum but there are far more injustices happening to others around the world. No consolation I know but it does demonstrate that you haven't been singled out .

From what we saw here of your mum she would want you to get on with your lives and never forget her. It wasn't her choice any more than it is the choice of anyone on here. I wish I could offer you words of comfort to ease the pain and if I had them I would but I know if you want to let it ruin your life as well it will.


John

Rory
22nd March 2013, 08:32
Hi Lolly

It is a natural reaction to losing someone, you way you feel. As John states, it must be the way forward to focus on the fond memories of mum for you and dad. I know when I lost my father siddenly and then my mother seven years later after a four year battle against lymphoma cancer , it came as a shock but we had so many happy times together , my brother and I simply felt ourselves lucky to have such marvellous parents and even today we recall the countless fun moments we all had without dwelling on their suffering. Time does heal and marvellous memories assist that healing.

Stay strong and live those memories of your super mother over and over again


Best wishes

Rory

poz
22nd March 2013, 10:02
Hi Lolly

just wanted to send hugs and tell you that you are in my thoughts.
i dread the day i lose my mam, and right now the mnd seems to be
catching speed and dragging her along with it.
i was told recently `you chose a hard and painful life for yourself` and
i just thought (wont swear) #*~'@ <*^*# (ok i will a little bit)
this has nothing to do with choice or karma and punishment - sadly,
that is life.
All i can say is that when we go thru this pain, it changes us for the better
and we can help other people through their own times of hell.

xx

Chrissy
22nd March 2013, 11:17
What happened to us was terrible. I don't know how we can believe it or learn how to put up with it. It doesn't make sense that there is no cause and effect or reason for what happened ... There's no patterns or connections to be made because there's nobody we can blame.

I don't understand that there is a belief in the world that people get what they deserve because we didn't deserve this. If people did get what they deserve then we may as well go around kicking blind people as god was already telling us they deserved it. I've realised that what happened to us was a set of completely chance and random events. In some ways this makes it worse..

I don't know why this happened but I know we couldn't have prevented it. All I know is that there there is no fairness or justice in the world and so my whole world concept and everything I was bought up to believe has changed.

There's nothing left for me and dad now mum has gone, but to seek solace in each other and offer comfort when we can to others, when we are strong enough.

I miss her so much

Hi Lolly

Thinking of you and know where you're coming from, I do hope it gets better with time as people say as I am very raw and empty at the moment, but still very early days yet paperwork and phone calls still keeping me busy. I haven't got to the stage yet of thinking why and how but I'm sure that will come, at the moment I feel we were pretty lucky in that it was 4 months exactly from diagnosis to demise but I do feel this disease is a thief and a ******* we unlucky ones have been robbed of our beautiful loved ones

Love Chrissy

looby
22nd March 2013, 21:55
Hi Lolly and Chrissy

It is very early days for me and my children --only a few weeks have passed since Roy's death but we have already asked 'what happened here?' We were just an ordinary family looking forward to retirement and enjoying some time together without the pressure of work. We had also just become grandparents when Roy began to have strange symptoms. The 19 months that followed his diagnosis will live with us forever. The cruelty of the illness that turned him from a 20 mile a day hillwalker to a totally dependent shadow of his self will never leave us. The unfairness of it all--my children always remember how their dad worked hard and guided them to be good people is something we all talk about. The pain of the loss is sometimes unbearable for us and we all still talk about how Roy struggled against MND to the end. In a bittersweet twist my daughter--Paris on this forum - found out she was pregnant a few days after Roy had passed away. Such joy at the thought of a new baby in our family but such sadness that the dad she adored will not be here to welcome her child into the world. We are lucky that our family is strong and we have each other for support. All we can do is hope that as time passes we will all only remember the good times--I had 37 Years with Roy so there is a lot to remember! The children also know that their dad always enjoyed life and he would want us to be happy and think of him with a smile.

berdbrain
23rd March 2013, 12:06
everybody is reaching out to you Lolly, in their own sadness, you wrote at 1 in the morning, and that could be the worst time to feel down and empty and wondering why this had to happen to your mum. the thing is she made you the person you are, I don't want to be sanctimonious and say there is a reason for everything, but just as you say why.. .,.why not? I lost both my parents to cancer and I grieved terribly, I actually think about them, if not everyday then almost every day, they are with me in all that I do and see and that my children do. They didn't know my Dad and they had my Mum up to their early teen years, but my youngest daughter who was 3 when my mum died has my sister in law who is going through this terrible illness, who is so special to her. It was she who went with my daughter to choose her year 11 prom dress (she only had boys, who had boys, but now her daughter in law is expecting a girl)......little did I know then that she won't be around to be with us to choose her wedding dress.
This is the worst time for you, I can remember being in a dream like state for maybe a year, yes you carry on outwardly as normal but the loss comes in waves and you just have to cope with it. there will be times when it just overwhelmes you because it's not fair at all, and you will see families with their loved ones and feel robbed yourself, but that feeling does lessen, you don't get over it you just get used to it.
I cannot say any more to you, other than I am so sorry and I do think of you, and Chrissy and Carol, John, Looby and others whose loved ones have lost their fight, and I do say a prayer for you.
I'm terrible with money so I shall say to hell with my kiss allowance for this month and go into debit...again...I think Rory seems like he was a nice bank manager, so maybe he'll let it pass.
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXand a great big hug.

Lolly
23rd March 2013, 15:44
I miss her so much. The shock has passed a bit now, but it protected me before. I don't get the panic and anxiety that goes with it but now there's a rawness that's hard to describe. The world feels less surreal, but it's now disjointed and has little meaning.

It feels like theres a tension between my sadness and everyday life. On the one hand it's like the world needs me to ignore what happened and move on but that stops me facing the truth that there is impermanence of life. ...... It's exhausting. I feel flat and vulnerable, needy and standoffish and knotted up.

I don't want to see the world this accurately and I don't want to be this self absorbed. I want isolation but I don't want to be alone. I want people to listen but I don't want to talk.

Crying makes me feel worse as it gives the emotional a physical pain too. I want to think of the good memories but the visual images of the last twelve hours of her life and the yearning I have for her makes me unable as it blocks out everything. I want to breathe her in and I can't let her go.

I want this bereavement to end and it never to have happened. I just want her back with us and I want this pain to stop me crying so much.

berdbrain
23rd March 2013, 20:01
I believe you are describing a broken heart, with such feeling and accuracy, and until you have the loss like yours people don't believe this is an actual real condition.
You were with her when she died and that must have meant the World to her and your Dad, and as hard as it is you must feel happier that you were with her, than maybe having been told to go home and to have listened to the hospital, which does happen to people.
sent with love XXXXXXXXXXXXXXXXXXXx

Lolly
24th March 2013, 18:06
They say that the hardest thing in the world is loosing someone you love........but its not. The hardest thing in the world is watching someone you love die.

lynsey
24th March 2013, 22:05
Hi Lolly i totally agree with what you say the hardest thing is to watch someone whom you love so dear die. I watched my lovely Dad die it took 4 heart breaking days, it was something else, and that was back in Janurary. I feel for you so much because my memories are the last i see of him dieing in pain. I will say it does get better and i know it does because i watched my mum go through much the same 20 yrs ago my love and hugs go to you and your family xxx

spyderpad
25th March 2013, 17:11
Oh Lolly, my heart aches for you, what you said yesterday is so true, my husband is not a small man and the physical care I give him is not easy, but the worse thing is, as you said , watching him slowly die. MND is a bar-steward. In my husbands case it ain't quick and it sure as hell ain't pretty. I have never been able to come to terms with his diagnosis and I dont think I ever will. Take great care . Love and Hugs. xxxx Carol

john
25th March 2013, 20:22
Hi Lolly,
I felt the hardest was having to watch knowing that there was nothing I could do to stop it. I struggled to come to terms with the reality of it from start to finish.

John

Lolly
25th March 2013, 23:36
Thanks guys for being so supportive, I'm not normally like this as you know but I'm having the worst week yet.

At the moment what is stopping me moving on isn't the slow progression of the disease from diagnosis to finish, but the actual moment in hospital when my dad told me that the doctor had said we had to prepare for the worst and the sixteen hours that followed which were so traumatic and painful for me and dad. We sat there at her bedside and she laid there going through the process of dying.

She had stabilised in hospital and we thought she was getting better, she was in Papworth, and we were so pleased. We had expected she would get stronger with the peg fitted, not slowly die.

.There are some things about those sixteen hours I don't think I will ever be able to talk about.

I'm feeling sorry for myself this week, I will feel better soon, I know.

roy
26th March 2013, 08:10
Hi Lolly,

Yes you will feel better soon,I felt very bad when my father passed and my logical side of thoughts knew he was free from pain and stress of living,I really missed him still do but know just have warm feelings of the good times which is what he would want and what I want.
Sounds hard but I would prefer to be remembered for what I was not who I am now,Stephen Hawkins prefers to be known for his achievements
Rather than the man with MND. Not sure when, but with spring and sunshine the warmth of your family and friends you can look forward.

Big hugs from me

Roy.

Steffi
29th March 2013, 13:38
I miss her so much. The shock has passed a bit now, but it protected me before. I don't get the panic and anxiety that goes with it but now there's a rawness that's hard to describe. The world feels less surreal, but it's now disjointed and has little meaning.

It feels like theres a tension between my sadness and everyday life. On the one hand it's like the world needs me to ignore what happened and move on but that stops me facing the truth that there is impermanence of life. ...... It's exhausting. I feel flat and vulnerable, needy and standoffish and knotted up.

I don't want to see the world this accurately and I don't want to be this self absorbed. I want isolation but I don't want to be alone. I want people to listen but I don't want to talk.

Crying makes me feel worse as it gives the emotional a physical pain too. I want to think of the good memories but the visual images of the last twelve hours of her life and the yearning I have for her makes me unable as it blocks out everything. I want to breathe her in and I can't let her go.

I want this bereavement to end and it never to have happened. I just want her back with us and I want this pain to stop me crying so much.
Hi Lolly,

I'm sorry you are struggling coming to terms with your mums death. I lost my husband last year and I'm still struggling coming to terms with his death. I nursed him for 18 months but the last 6 months were the worse seeing him getting weaker each day. He went in our local hospice for his last 2 weeks where he got 24hr professional care. Like you when I'm having a bad day the only memories I can think of was the night before he died seeing him struggling to breathe and the saliva building up in his mouth. He seem to say his goodbye to myself and his family and sadly he passed peacefully away in his sleep. I feel guilty that I wasn't with him but I'm beginning to accept that this is what he probably wanted. I am receiving councelling from the hospice bereavement group and it does help, probably you should try Cruise.
Hope you start to feel better soon.

Lolly
29th March 2013, 14:44
Hi steffi. It's so ironic that my mum was a bereavement counsellor for cruse and I'm a counsellor too. I guess the grief needs to be worked through and I have already had five sessions of private counselling to help. These things can't be rushed, can they...... It's only been three months, but I suppose what has surprised me is how much the shock and surrealism, actually protected me and blocked out the pain .... I read my early posts in this forum and they are so at odds with the person I feel I am now. I don't feel safe anymore. I will get better in time, I know and I'm looking forward to reflecting on my happier times with my beautiful mummy when she was here.

I'm so sorry for your loss and everyone's losses too. I know, in part, exactly how you feel. ..... And I'm sorry to bring the forum down into my despair .... I will bounce back, I'm sure.

berdbrain
2nd April 2013, 18:36
Hi Lolly, how are you doing this week? I don't know if you read the guardian, but in the Review section there was an interview with Julian Barnes who lost his wife in 2008 because of a brain tumour.....anyway amongst the things that people said to him the quote that stuck with him was 'it hurts exactly as much as it's worth' so although no comfort, that is how it is for you.
thinking of you, with love Debbie XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

maccaman
24th April 2013, 06:22
Hi Lolly....I have struggled to describe my feelings in watching my brave wife of 30 years struggle with MND for the last year and a half...you are right...The hardest thing in the world is watching someone you love struggle.....an absolute tragedy unfolds every day......but every day I tell her she is going to outlive me and we just get on with life...I don't know what else we can do. She is so brave and at times I am a babbling mess. Your Mum was also one of the brave ones who just got on with life and set you a fine example on how to handle adversities that are presented to us. Your emotions will be raw for some time...but that is human and simply shows what a caring person you are...

Lolly
25th April 2013, 18:46
Things are slowly getting a bit better. I'm helping out by serving lunch at the day centre to help raise funds for mnd on Saturday and will be selling my home made cards on the day too, roped dad into it too. Getting back into the horse showing world .... First show Sunday with my half shire boy and I've gone back to work for two days per week. Still very sad, though, it's hard to see dad so tearful. A strong man who I have never seen cry before. He's now so bewildered.

berdbrain
25th April 2013, 20:26
Evening Lolly, thanks for the update....you will be sad of course, but I'm glad you are getting back into doing some things you enjoy and also some work...a busy mind makes the time go quicker. So hard for your Dad too I'm sure. Your life has changed for ever and you have to get used to a new way, you can't see your mum but she is part of you. You will keep going over things for a very long time, you know all this yourself, but keeping busy is probably the best thing...but not too busy.
sent with love XXXXDebbieXXXXXXXXXXXXxx

Lolly
17th May 2013, 00:00
It's time to decide on what to put on the headstone now the ground has settled. Every form of words daddy and I come up with make us cry. They are all so inadequate. Nothing we can do or all the pain we feel and go through isn't going to bring her back. I can't go to her grave yet but I want to go back to the hospital room in papworth and imagine I still have her ...... Life goes on, for a random time at least, and we are learning how to live without her, but I feel so sad and wise knowing now what I know about mortality ...... life is temporary. Nothing and no one lasts. We just got to try and have some laughs along the way.

cocktail charlie
17th May 2013, 00:14
Hi Lolly,
I've just seen your post and it was so raw yet so real it really touched me. My husband has Mnd so unless life has another cruel twist in store I will probably have to face it without him at some time. I would imagine I would feel just as you do. So I send my sincere condolences to you and your dad. From experience I know time will lessen the pain and you will be able to remember your mum with a smile sometimes. You are right about the laughs by the way.
Love Charlie xx

berdbrain
17th May 2013, 13:01
HI Lolly, I'm sure you have many poems that you would like to include, here is one that we used at my mum's funeral and also the end of it on her gravestone:
You had walked beside me along the ploughed furrow
some times ahead if sods were rough
then behind me if my need was open field
now no longer here but gone to sunlit pastures.
Help me not to stumble, but to rejoice in your happy state, because yours was a smiling God, your time will have been in vain, if I do not carry on as you had done so many times.
And I will think of you
and meet you in my mind
because barriers are man made
and you will be there
just as you always were.

We said on the gravestone: 'And when our need is great, you will be there, just as you always were.'
I think of that saying so many times and when I need help I always turn to my mum, that will never change and that is why those words are so important to me.
You have to search and find your own words and they will be with you forever.
Good luck in your search
with love
XXXXXXXXXXXXXXXXXXXDebbieXXXXXXXXXXXXXX

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