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Wish someone would help him


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Dear Leila, I haven't posted much lately, too much bad stuff going on, but I just had to let you know that my thoughts are with you and your dad. This evil disease has taken so much from so many and put such terrible sorrow and distress on everyone it touches. You have truely been an inspiration with your relentless pursuit of helping your dad and at the same time have helped others, James benefited from your SIBO advice, that no clinicians ever offered.


You and your dad obviously have such a loving and caring relationship, just by reading your posts your love for him shines through and his for you. You both have what many other daughters and fathers never manage and this makes his suffering, your suffering too. There is nothing that I can write to make you feel any better, so I just send you all our love and hope that everything is as good as it can be. Love Fiona X

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So sorry to hear about your dad Leila, he has been through such a lot.


You have been his rock throughout all this, you are a special daughter.


Much love

Julia x

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Dear Leila,

I am truly sorry and I know there are no words that will take away the pain you are feeling right now. You are amazing and I'm sure your dad knows this. He is lucky to have you.

This disease is truly awful and so unfair! I m thinking of you and your dad and I hope they are keeping him pain free.

Please keep posting we are all here for you.

Love Sue x

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My dear Leila, I am so sorry you have had such a hard few days. I am also glad that your dad still manages to stroke your face and hold your hand, showing how much he loves you, perhaps better than words can. You have difficult questions from the doctors. For me, I suspect I would say no resuscitation - as you say, you just want him to go to sleep. But perhaps it is possible for him to take a little nourishment by mouth, or a drink, if he wants it? Certainly to moisten his lips. Whatever makes him comfortable must be the right thing, surely. Sending all my love to you, Leila xxx

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Hi again Leila,


I hope you know how amazing and strong you are, and although the next few days will be the hardest of your life, you will get through them, and you will keep fighting for your Dad, making sure that he gets the best care possible, and making him the proudest Dad ever. As Didge says your Dad is showing how much he loves you, and perhaps tell him it is alright to rest now, tell him how much you love him (I know you do that anyway), and if you can, tell him you are going to be ok in the future.


If it helps, take your time making any decisions. I know when Paul was at the stage your Dad was at, when he could no longer tell me what he wanted, I had to make those difficult decisions, that they are asking you to make now. Stopping his drip, not for resusitation, putting a catheter in, I hated having to agree to them doing things to him, and asked the nurses to let me think about it. I then got my mind round that what they wanted to do was best for Paul, and said yes, when I felt ready.


Try and get some rest when you can, and try and eat a little.


Love,

Nikki

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I wish I hadn't come on now so late in the evening cos this has upset me a great deal and I don't think I'll be sleeping any time

Soon. You've bee amazing for your dad, and you still are. Be very proud and use the strength you've shown us all to keep going. I'm so so sorry is all I can really say but I hope you and he cope as best you can


Rob

Xx

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Hi georgie and I are so sorry to hear how poorly

Your dad is, our thoughts are with you. You were so kind

When you sponsored georgie for her Great Wall of china walk

I don't post very often now but have followed your dads story

And you have been amazing. Stay strong xxxx

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Hi Leila


I am so sorry to catch up today and to read your post about your Dad declining so rapidly. As many of us have already experienced, this disease is so relentless and so great and sweeping your feet from under you.


I can't say anything which will make any of this easier although it does sound like your Dad is comfortable and the love you have for each other, and everything you did to try fight the disease and help him will be a comfort one day I am sure. For now it sounds you are doing absolutely the right thing for your Dad and being there for him.


Loads of love Leila


Cathy xxx

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I am so sorry to hear of your Dad's deterioration Leila. The final days are very hard, but you couldn't have done more for him and I'm sure your love and support means everything to him.

My thoughts are with you and your Dad.

Be strong,

Hilary

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Thank you all so very much for all you lovely words.


Though I haven't read them out to Dad, I know he would appreciate them as much as I do.


Dad is nil by mouth as he can't swallow. He is given fluids by IV.

On Friday, he started with secretions. It was horrible to hear, as obviously, we all know what they mean. They moved us to a side room and put me a little fold up bed in there with him. I will not leave him now. I am his voice and I will shout it out as loud as l can.

We have had some very special moments in the last few days. Even though he hasn't spoke to me, he has stroked my hair and tapped my nose!

Yesterday he had a syringe driver fitted. Afterwards, I told why, how, what for and that I can alter any of the medications if I feel they aren't beneficial. I asked him if this was ok. He lifted his hand and put it on the back of my head and put me on his shoulder. There are things money can't buy.

Today, sadly he hasn't opened his eyes. The secretions are quite bad and he has needed suction. He has been given loads of Buscapan and I do feel it helps, but they need to keep it up regular as well as in the syringe driver. He is also receiving Oxycodone 20ml, midazolam 20mg and clonezpan 250mcgms. I believe he is pain free but I think he suffered from agitation and anxiety which I really don't want for him. He has always been scared if dying from diagnosis, and I don't want anymore suffering for him. I want his last few moments to be as peaceful as I can make it for him. We have a brilliant Macmillan nurse who makes sure the nursing staff are attentive to our needs.


Thank you all once again for your amazing support. Me and

dad have needed every last word.


Leila xx

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Leila, I am sure you and the Macmillan nurse will make sure your dad's passing will be peaceful and I am glad that you have been able to spend these precious moments with him and will now be there until the end. Make sure you get rest and food yourself! Leila, any support you've had from us has been given back a thousand fold. I am sure I speak for everyone here when I say that we are all here for you now and in the future. Sending lots of love, Didge xxx

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You are both in my thoughts. You have been an amazing daughter Leila.


Bless you both.


Julia x


Sandra: Sorry to hear that Trevor is also very poorly. Much love Jx

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Oh Leila,

Thank you for telling us about the special moments you and your Dad have shared, thinking of you together, made me smile and cry at the same time. For a little while remembering these things will be painful, but in time they will bring such comfort I am sure. So glad that you have a fab Macmillian Nurse, and hopefully that has restored your faith a little in health professionals. As Didge says we are here for you now and in the future.


Lots and lots of love,


Nikki and girls.

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You've described some very beautiful moments that only two people who love each other so much can share. Thank goodness you have found a Macmillan nurse who is able to give you the support you need, though you seem to be doing an amazing job yourself.

Much love

Rob

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Leila.....

In our thoughts and prayers at this difficult time. Your Dad must be so proud of his "special daughter" who has been there through thick and thin and always fighting for what is best. Take great care of yourself. Annette xx

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Leila, your Dad really is fortunate to have such a wonderful Daughter who has fought for him through thick and thin. It sounds like you and he have good support at this difficult time and that the final stage of this journey should be peaceful.


Thinking of you both as ever.


Steve

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Dad passed away on Tuesday 21st April 2015.


He went unconscious on the Sunday. I do not believe he was in any pain. I think he was a little anxious from time to time, but the Clonazepan helped.

Monday, I got him a newspaper and read the racing pages to him. I don't think he was at all restless on that day. I don't know if he knew what was happening or not. I don't particularly know what unconscious means, when it comes to the mind. Could he still think about things, and so on?

All through Monday night, his breathing was a little fast.

Tuesday morning at 6 am, the nurses came in and moved Dad around. At 6.20am, his breathing suddenly went from fast, to slow and long. I ran round to his side and felt his nose ( the macmillan nurse told me this was a sign of imminent death) and it was ice cold, and was gone.

I did not react as I expected. I pressed the button and the nurse came in, she took one look at me and fetched some more nurses. I then sat with Dad for 3 hours. They then came in and washed him, and I went back in to sit with him. I was strangely calm, I even logged onto his bank, and gave him a bank balance!

I am still staying at Dad's house. On my own. Very on my own. It hit me last night, and I can't cope. I really can't cope. I want my Dad. I love him so very much, and I want him back.


xxx

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Dearest Leila, I am so sorry to hear that your lovely Dad is gone. Whilst it is good to hear that he did not suffer, your own pain must be immense. I will continue to think about you a lot and hope you have some support through this very difficult time.



Lots of love

Steve

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Thank you Steve. You were such an inspiration to Dad. He always asked about you. If Dad struggled with something, he always asked if you did, and you coped.


Dad and I only went for test results. I never expected that a week later, I would be surrounded by papers for his funeral.

He left the house that day, with every intention of coming back that afternoon.

Obviously I always knew Dad wouldn't win, but he never stood a chance. He fought so bravely. He truly is my hero and I love him more than words can say.


Leila xxx

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I'm very sorry to hear of your Dad passing Leila, having lost my own I know it hits hard. You will see your Dad everywhere and at first that will be very painful but after a while it will bring you comfort and many happy memories of the times you had together.


You're never alone, though I do understand that feeling will be very strong, we're all still here to support you through the next part if you need us.


x

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I'm so sorry to hear your sad news, you will cope and manage, it's 9 months today I lost my dad, I still think I must phone him and tell him things then realise I can't. I have days that I can't look at photos of him. Just take each day as it comes, that's all any of us can do.x

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