Thought whole point of Palliative Care was to make the patient comfy?
4 minute read time.
FormerMember
As you know, Peter was admitted to hospital on Sunday 14th Feb and it was found he had pneumonia with an underlying virus. They kept him in an assessment ward for 2 days until transferring him to the Respiratory Ward in the same hospital. He has struggled on with his breathing even with the oxygen and has not been able to eat, or even drink much at all. He has terrible heartburn and was really feeling poorly. Has been sat up 24 hours a day with very little sleep in between due to the comings and goings of a busy ward. Most of us know this old story!
Peter's lungs are full of fluid as is his abdomen. The abdomen ascites is what is causing the sickness because of the strain on the stomach. This has also been affecting any medication he has been given over the last 10 days. Sickness tablets, morphine etc has not really been very effective. As we know nothing about medicals much, we sat watching him deteriorate before our eyes. The drainage of the lungs and the abdo could not go ahead due to the Warfarin causing his INR levels to be so high. They stopped the Warfarin on the 15th February but his blood carried on getting thinner and thinner, which is OK-ish for someone suffering from clots caused by cancer thickening the blood but not for a surgical proceedure. They couldn't really work out why his bloods were not thickening up again while off the Warfarin but he was on antibiotics which could be why! Saturday he finished the antibiotics so we have fingers x'd things will get better for this week. The Doc did say last Thursday that if things were going well Peter could have the drainage done, in three stages and be home by next Friday.
Couldn't contact anyone over the weekend regarding him coming home, ie: District Nurses etc because there is nobody available to speak too. So we sat patiently waiting for Monday morning when I could start ? arranging for him to come home. In the meantime the nursing staff, including the Sister on the ward were running themselves ragged trying to cope with the D&V virus on the ward, it is horrendous. I have to say, the staff are all wonderful but shattered.
So, yesterday I contacted the Macmillan Nurse who has been assigned to us and surprise, surprise, she is on holiday from Friday for a fortnight. We have met her twice in the 16 months Peter has had the cancer that is all! So she told me to contact the District Nurse to arrange for an airbed to be delivered for him. This he needs now because he has a Grade 1 pressure sore and has got this sort of mattress in the hospital at the moment. The DN started going on about him not having it when they were looking after him and why does he have it now. She moaned about getting a mattress. She asked what the Palliative Nurses were doing? I said he had not seen any! She asked why he didn't have a syringe pump fitted? I didn't know? This apparently is how they get any medication into the system pretty well straight away. I am so concerned now that I seem to have to find things out for myself!!
Peter had the syringe pump fitted at 8.00 last night, so something got moving at least and when I phoned this morning they said he was much brighter. He phoned me a little later and said he had had some breakfast and did not have any heartburn. I cannot tell you how happy that made me feel and cheered me up no end.
Then 10 minutes ago I get a phone call from Peter to say the Registrar had just been to see him and they have decided not to do any more invasive things to him, so will not be draining the lungs or abdo afterall and they are sending him home on oxygen. They reckon his lungs and abdo will fill up again because it is cancer after all! He is gutted, I am gutted..... I asked for the cancer not to be mentioned to him at all. Even the Oncologist yesterday didn't mention anything at my request bless him. I have phoned the palliative people and they are going to find out why the change of plan for Peter's comfort! I am so so scared. I have tried phoning him back but cannot get a reply, they won't let me onto the ward if I go down even. He needs me to be there and I'm not WHY WON'T ANYONE LISTEN TO ME!!!
Will give an update as and when I can.
Cherryl
FormerMember
Cherryl
You asked in an earlier post where we get our strength from. The adrenaline kicks in and we seem to get a superhuman strength.
My husband didn't make it home but died in an intensive care unit however I was with him constantly for almost a month and for the last week hardly slept. The staff were marvelous and respectful of my need to help to look after him and my need to be alone with him. I look back on those weeks and do not know how I coped but I also feel so glad that I was able to spend those last few precious days with him.
I think he chose when to die. He hung on until just after our grandson was born having been told months earlier that he would not live until then. It was as if he was proving a point. He also waited until there was just the two of us because our daughters had just gone home.
It's the worst you can ever have imagined, having to watch as your loved one dies and yet it's also a great comfort to know that they were not alone and you were there to hold them.
Thanks Tarnie and everyone else for your kind comments and help! I know what you mean about having him close, I am so pleased I have been able to do this small thing for him. As I have already said, the District Nurses have been angels, I wish I could do something to repay them but there is not enough money or love in the world for that! I love the way his face lights up when they walk in the room, wish he did that for me lol !!!
Peter was started on Hypnovel yesterday so our days together are now numbered. As if I didn't already know this. I mentioned on another forum that it was like a slap in the face when the Hypnovel was mentioned to me, I felt as if I was taking him to the vet to be 'put down' like I had to with our cat a few weeks ago. I know it is for his best interest so I am not complaining but having had the subject broached to me eventually, I cringed!! I am over that now and know it is for the best and do go along with the decision. In a way it has relieved the tension I have been feeling knowing that his struggle will soon be at an end and he will be peaceful again at long last.
So thanks to you all for keeping me going this last 17 months. I will keep you up to date over the next few days.
Dear Cherryl, Peter has been very lucky to have you by his side and I'm so glad you have such good support from the District Nurses. I'm sure Peter's smile is payment enough. I'm thinking of you and sending love to you both.
Hope you are coping. It's so very hard, I can understand your feelings of relief that Peter's suffering will soon be over.
I'm sure you have lots of support and will need it for the next few difficult weeks. I know I was scared of being with Keith when he died but it was so peaceful that I was glad I decided to be there.
