[jennyspin90Participant]

I hope I'm not putting this in the wrong place so I do apologise if it is. I know that a lot of you have been following my dad's diagnoses on Xmas in the "newcomers" section of the forum. You have all been wonderful and have given me strength to know that we are not alone.

It is with very heavy heart that I have to tell you that my dad decided yesterday to withdraw and refuse all further treatment. The hospital took him down the ward for his dialysis yesterday morning and had to bring him back to his ward as there wasn't a "slot" for him, they then took him back later but there was a powercut and once more, he was wheeled back onto his own ward. They were setting up a machine later in the day to do his dialysis on the ward but he shouted to them "enough, I've had enough of being messed with and I am refusing all treatment". We were unaware of this until the evening visit when my partner and one of my sisters visited him ( due to my cold). At that stage he had a number of tablets waiting for him and was refusing them too. Both sister and partner pleaded with him to change his mind and have some treatment but he lost his temper with them and said that his mind was made up. When they were home I asked, cold or no cold, if I could visit him this morning. I went to see him at 10.30 and he was lying on his side in bed. He was having difficulty breathing and his hands and face had started to swell. He knew what I was saying and I pleaded and pleaded with him to change his mind. Unfortunitely, he has decided that he will have no life if he comes home on dialysis and had decided that he wants to "go". I managed to persuade him to let the nurses give him painkillers, etc but he has said no dialysis. The nurse who looks after him was contacted the palliative care team this morning. We have just arranged a family visit to try to arrange either a "coming home" for him or a hospice. The meeting is later today. It's been such a bumpy road, I guess I was hoping for a remission when he was on the clinical trial, then a few months of him being at home and us taking him places in between dialysis when he decided to come off the trial and now he's coming off everything it is too hard to accept. I would hate him to be in pain in the end and just don't want that in my mind for the rest of my life.

[GayeParticipant]

Dear Jenny – I am so very sorry to hear about your dear Dad and all the awful feelings and emotions it has stirred up in you all. I understand his decision totally and he has every right to make it. But what now? As a great supporter of hospice care, if the palliative care team can get him into one and he wants to go, he will receive wonderful love and care, and you will all receive that same support. Or Hospice at Home/Marie Curie may be in your area. I do hope that your meeting brings you a care plan which will help you all.

It sounds such a difficult time for you and I send you all my good wishes and love to help you through.
Love, Gaye x

[tomParticipant]

Oh Jenny What a shame it is for your dad to go through that.

And Like Gaye I understand his feelings, I myself have wondered if my quality would be better if i didn't have all what I have had done (and thats not as much as some)

Good Luck to you and your Dad its a brave decision he has made.

Love Tom xxx

[brochoParticipant]

Dear Jenny I can only imagine what you must be feeling. I think if we were being honest most of us have considered refusing treatment when its particularly tough but I do hope he thinks it over and changes his mind. My thoughts are with you and we are all here to support you through this awful time love Bridget x

[GeorginaParticipant]

Hi Jenny

I was really sorry to hear your news. As Gaye has said, palliative care and hospice care are very good and he should be comfortable. He may change his mind but whatever he decides, I'm sure having you and all the family around will be a great comfort and support.

My heart goes out to you and your family at this difficult time and I'll be thinking of you. Take care of yourself.

Georgina x

[DebsParticipant]

Hi Jenny,

I just wanted to say good luck with the next period for you. It must be hard to selfless in this and help him in what he wants, when the last thing you guys will want is to lose him. But you sound like a close family and I hope you have the support around you that will help.

Good luck with the decision making, the conversations with him and remember if it does get hard to watch, we're all hear to listen and help.

Big hugs
Debs x

[JudyParticipant]

Hi Jenny
Let me say firstly how sorry that your dad has decided to stop all treatment.
My husband was diagnosed last year with Myeloma and Renal Failure I really struggled to find any one who had the kidney problems. H e also refused treatment and dialysis. He was only 51 yrs old and thought his life was over. After a lot of nagging he started dialysis and was told that he would be on it for the rest of his life. He was on the same trial as your dad. After 5 sessions the kidneys started to work. They still are only 15% but least he is no longer on dialysis. If you want to email me judymdennis@aol.com I am happy to chat.
If dad is determined to have treatment read your book on kidney failure they must have given him when he was diagnosed.
I will pray for your dad and your family.

[jennyspin90Participant]

Hi Judy and everyone, thank you so much for your kind words. Unfortunitely, a very poorly dad was moved to the local Douglas Macmilan hospice yesterday morning. He is on no medication at all and hadn't eaten for over a week. The hospice is lovely and the nurses are wonderful. He is still quite "with us" and he has asked for his favourite girl, Jessica to go and see him (she is my very nearly nine year old cocker), to go and see him. I was a total nervous wreck when I got there last night and luckily my OH drove for me. The nurses had to take me into another room as a broke down when dad asked for a drink of water. I managed to feed him some ice cream and jelly and he even managed a cup of tea, although my OH said that as a dog person I make a hopeless nurse! One of the head nurses has offered to refer me to councelling and I think that that is a good idea as I just can't cope with the fact that if he had stayed on the trial or at least dialysis then we would be planning his homecoming. I think that his fate was sealed when my stepmum would not have him home and I think that he decided then that noone wanted him. It all just seems so unnesessary. You are all wonderful people for fighting this illness x

[tomParticipant]

Hi Jenny

It must be a great relief to have your Dad in the Hospice, and even more now you know how good it is and the Nurses are great as it will take a bit of pressure of you and your Family.

As for Counseling I would say go for it, I was one that said "Oh I can Cope" and yes I can but and its a big BUT, when I had a chat with one and I was going to keep the Stiff Upper Lip well it failed me, the tears just came rolling down my cheeks, am I ashamed no not a cat in hells chance am I embarrassed, would I do it again Too true i would.

Good Luck to you all
and Love and Hugs sent to you

Tom xxxxx

[GayeParticipant]

Dear Jenny – I am so glad your lovely Dad is now in the hospice where I am sure you are all being treated with such dignity and love. He has made his decision but I know how painful it must be for you. I echo Tom's wise words about counselling (tears and all). Most hospices provide this so do use it if and when you decide to want it. In the meantime you know he is in good hands and we are always hear to listen.

My heart goes out to you Jenny.

Love, Gaye x

[brochoParticipant]

Dear Jenny what a terrible time for you all I am glad your dad is in the hospice where he and you will get the best possible care . I hope you do take up the counselling when you are ready to it will help you come to terms with your dads decision I am sure My thoughts are with you love Bridget x

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