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Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Wish someone would help him

Postby nikkis » Thu Apr 16, 2015 10:54 pm

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.


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Joined: Tue Nov 19, 2013 9:30 am

Re: Wish someone would help him

Postby RLF » Fri Apr 17, 2015 12:10 am

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


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Joined: Wed Mar 14, 2012 2:29 pm

Re: Wish someone would help him

Postby charney » Fri Apr 17, 2015 8:26 am

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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Joined: Fri Mar 15, 2013 5:43 pm

Re: Wish someone would help him

Postby Cathy » Fri Apr 17, 2015 6:17 pm

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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Re: Wish someone would help him

Postby belgrade » Fri Apr 17, 2015 6:41 pm

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,

Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Wish someone would help him

Postby jay » Fri Apr 17, 2015 8:15 pm

Just to let you know im constantly thinking of you and your Dad, you have been so strong,
massive cyber hug Jayne

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Re: Wish someone would help him

Postby sandraW » Sun Apr 19, 2015 4:07 pm

sending love leila Trevor is very poorly too sandrax xx


Re: Wish someone would help him

Postby Fifi » Sun Apr 19, 2015 9:08 pm

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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Re: Wish someone would help him

Postby Didge » Sun Apr 19, 2015 9:24 pm

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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Re: Wish someone would help him

Postby J_T » Sun Apr 19, 2015 9:30 pm

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

Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Wish someone would help him

Postby nikkis » Sun Apr 19, 2015 10:21 pm

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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Joined: Thu May 22, 2014 8:22 pm

Re: Wish someone would help him

Postby Sueoliver » Sun Apr 19, 2015 11:26 pm

Leila you are amazing and inspirational. You are constantly in my thoughts. Xxx

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Joined: Tue Nov 19, 2013 9:30 am

Re: Wish someone would help him

Postby RLF » Sun Apr 19, 2015 11:43 pm

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

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Joined: Sun Dec 01, 2013 8:43 pm

Re: Wish someone would help him

Postby Ant11 » Mon Apr 20, 2015 9:40 am

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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Re: Wish someone would help him

Postby Slewis7313 » Mon Apr 20, 2015 9:50 am

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.