19th May2011

Deciding on the impossible

by Dutchcloggie

JD is in the hospice. After agonising over it for a few days, I decided I wanted to see if re-hydrating would make JD more comfortable. So she wemt to the hospice and spent yesterday on a drip. After a night of seizures, vomiting and bed wetting, I think the answer is clearly NO. Her body is strongly objecting to the fluids. By doing this, I have probably prolonged JD’s life by a few days (the fluids did make her more alert, even if also more uncomfortable) but also prolonged her suffering.

I sat down with the consultant (and a host of medical students) to discuss options. He understood how hard I found it to make decisions when everyone keeps saying that it needs to be good for both JD and for me. Since these two things are not always the same, that makes deciding almost impossible. The doctor was lovely and he asked me if I would prefer him to make the decisions in my place or would I like his opinion and decide myself? In the end, he gave his opinion on what he felt should happen and I said: then that is what we’ll do. And then I cried. Not just for JD, but because finally I made a decision with clear input and opinions,based on facts and experience, not just on emotions, hopes and wishes. This has been so lacking in the past few weeks where the responsibility was all mine. I made decisions based on gut feelings, rather than on experience or medical knowledge. This has meant I never felt sure about having done the right or wrong thing, something which has proved extremely stressful.

Decision was to stop all treatment, other than pain relief. So no fluids, no food etc. This is effectively the same as it was at home. But this time, I also decided to keep JD in the hospice. I know this is probably better for JD and me as I would most likely panic every time JD vomits or moans in the night. But I still feel like I failed her at the last minute.

So the waiting begins. Or rather, it continues. For as long as someone can live without fluids. This time, it really does feel like I can cross off the days.

Is it wrong to already be wondering which one of her friends would like to speak at the service?

4 Responses to “Deciding on the impossible”

  • >Marieke, please don't ever feel like you have failed Jane, I don't know of anyone else who has done more to make sure their loved ones journey is as comfortable as possible whilst their own heart has been breaking.You have fought for Jane every step of the way, I am glad that you have now had some medical input at this stage that can bring you some comfort about the very difficult decisions you have had to make in recent days and weeks.As for thinking about the service, your practical mind is still working and right now the service is one of the few things you have control over. There is absolutely nothing wrong with thinking about this, you have tried to do everything you can for Jane throughout this battle and the service is sadly a part of this 'battle' :(If I can be of any help to you, any time, please don't hesitate to get in touch.Love and comforting hugs for you both.Your BT BuddyNatalya x

  • Wes

    >I can't agree with Natalya more, and I'm thinking of you and Jane.

  • >I don't think you have failed Jane at all. Not at all. And I started to collect information, plan the service, and write the eulogy four days out. It is just the way the human head goes. My thoughts are with you.

  • >There is no right or wrong at such a difficult time Marieke, what is clear is how much you have given to Jane and continue to give. All of us are indebted to you for looking after our friend. Let us know if there is anything we can do to help.Ayaz x

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