Hospice care for dad

Hi everyone,

Was up at the hospice this afternoon and again in the evening to see dad. I sat down with the doctor on my own as mum didnt really want to talk with her and would rather sit with dad. Mum would rather that I speak with her from now on and the doctor is okay with that if that is what mum wants.A bit of good news, the kidney problems are not being caused by the tumour spreading into it or pressing into it, which she said was a good thing. However she said that dads kidneys are dry and are struggling right now, and although she said that dad seemed a bit better this morning, she described dads condition right now as precarious and she is monitoring him very closely indeed.

He also has a urinary infection and is still on the sodium drip and still has the temperature and is still vomiting, even though he has the syringe driver in and is not taking his meds via tablets. The doctor said that his body is under a lot of stress with having to deal with all of this, the CC and the jaundice combined. Now he is bringing up blackish bile instead of what he was bringing up before and this only started today. His cough has also deteriorated quite a lot since yesterday and he wants to drink a lot of water.

Dad didnt sleep at all last night and he really is badly irritable. He didn’t really want to talk at all to us in the afternoon and wanted to be left on his own after about an hour. So I went back up in the evening on my own and he still didn’t talk much and again just wanted to be left on his own. I think he knows himself that he is going downhill pretty fast and this is his way of handling it. When he was speaking, sometimes he was talking reasonably clearly and making sense, then a minute or so later he was badly confused and we could barely hear him. Before I left this evening, he told me to take care of mum, which I promised him that I would.

I told the doctor that we will be back up tomorrow and she wants to see me when we get there, so will see what tomorrow brings. On a slightly better note, he managed to eat something for breakfast, dinner and at tea time, but it’s not staying down, but at least he wanted to eat something.

Thanks everyone

Gavin

Thanks Jan. I know that if need be, then dad will get the use of a hospital bed, we were told that a while ago so I’m assuming that we would also get other stuff that you mention. And there will be nursing help that will stop in when needed also, and I do the cooking and housework just now so I would continue with that.

I’m guessing that where it becomes really difficult is when dad would be bedridden and needs help with that, which obviously mum couldn’t manage. And if dad needs oxygen then that would also be delivered to their house when needed.

Thanks Darla. I know that we would have help at home from the Macmillan nurses and also from the Marie Curie nurses. If dad wanted to stay at home then they would stop in when needed and I also think that Marie Curie nurses can come at night and even stay over to let us get some sleep. I know that patients have to be referred to them but I’m assuming that dad would be eligible for that. I’m not sure how it works exactly in the states, but here we do have great care in the community from these excellent organisations if patients need them.

Should he have to go into hospice, then he would go into Roxburgh house which is attatched to the Macmillan day care that he day goes to each week. Also, if he has to get his stomach drained then this is where they will do that procedure and not in the hospital so he would have to go in for at least a few days. I know it is hard for mum to talk about this stuff, but I sort of think that it is better to discuss it when we can rather than wait until we are maybe forced to make a very quick decision which may be even more stressful for them.

Thanks Lainy. We took care of both of my grandads at home at home for as long as we could and I know that it will get tough, especially for mum. I know that mum is not up to caring and a lot of it will be down to me. I am ready for that and will do whatever I can, but you are also right in that it will be hard for mum as she cant really do a lot.

Making a list of the pros and cons sounds like a good idea and I’m hoping that when we see the Macmillan nurse on Thursday then she will have some input here to which mum and dad will listen to. I know that dad will listen to what I have to say and if I feel that hospice is the best option then he will go with that, but I also know that he wants to stay at home for as long as possible. I guess there is no right or wrong answer here.

Thanks everyone for your thoughts and kind words.

Gavin