In Situ at the Hospice

Peter is now in Clare Holland House. He has a lovely room and it is large enough for a sofa bed so I can stay if needed. Although I find that the 11 or so hours a day I am there is very full on and it is a good break to drive home and crawl into my own bed.

There are still a few glitches with Peter's care and with the staff understanding what his frustrations and anxieties are. Mostly Peter gets angry when people can't hear him or don't do things he needs when he needs them. This is because he can't help himself, can't get out of bed now, can't get a glass of water to rinse out his parched mouth, can't sometimes reach the call button if it hasn't been put in his reach and can't call for help because his the oxygen dries him out so much he can only whisper until he has a reviving rinse with water. There is also a difference between his anxiety and frustration about these care related items and the overall possible end stage palliative care issues. Yesterday, it was interpreted that he was in respiratory distress so some Valium-type drug was given and he slept for 3 hours. But he woke wondering why he had been asleep and where the 3 hours had gone. He says he doesn't need that kind if intervention unless he asks for it, which he has done in the past in the hospital, and that all he was, was frustrated and angry.

Anyway, my mother is here with me now and she said the moment I walked in the door and he told me about his issues, and I said I would sort them our, Peter visibly relaxed and let go with relief. I certainly spend most of my time with Peter letting the shifts of staff know about how Peter likes to be cared for, what his history is, what he wants, doing chest physio and arm work to reduce the swelling in his immobile right arm, doing mouth and nose care, sorting out medications (trying to ensure he gets what he needs from both the ongoing drugs he was used to at home and the newer ones he has had in hospital) as well as his oxygen flows etc. It's more than a full time job and I do end up very tired at the end of the day (around 8 or 8.30pm).

We have seen Dr P a few times. Peter still believes that there is a chance he can recover and he has said so to me and to the evening nurse. Yesterday he continues to try to clear his lungs, do the chest physio, lying on his side to give his pressure sores a rest as well as drain his right lung. He was also allowed to return to his liquid food through the Peg site on the proviso that it didn't cause fluid overload in his lungs etc. I was so relieved at that and we were able to start it again on Tuesday night as I had brought a supply and the pump with me. I am concerned about his kidneys and hope that they can keep going.

I know the hospice staff think that I have unrealistic expectations of the chance of a recovery and that Peter and I are kidding ourselves if we think he will get over this illness. But I cannot sit by and do nothing while he continues to have confidence in me and looks to me for the relief of his situation. While ever he remains as totally switched on as he is and continues to ask me for help I will do everything in my power to assist him. And if there is a slim chance of recovery and we get it, then I will be so relieved and Peter will feel vindicated about never giving up, as he has come back from pneumonia and infections before.

We both know there is always the cancer or the next illness and we will probably be equally unprepared to give up on him at that point, if we have another chance. But when you love someone and can actually assist to help improve their comfort, reduce their anxiety and advocate on their behalf, then, for me, there is absolutely no other path than to continue to do so while ever there is a tiny hope and Peter wants me to do so, which he does.

Thanks for the emails, phone calls, flowers and visits. All very appreciated. Sorry if I haven't responded to you personally, but I feel sure you understand.

Leanne