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
Oh Cherryl, this isn't fair! I see your post was this morning so hope you have managed to sort some of the problems and got in to see Peter. They can't stop you seeing him and they should respect your wishes of not talking about the cancer, although there will always be one that isn't listening.
We had an officious DN too, she could be lovely but she didn't like anything to change her routine or undermine her authority, however Peter is her patient and you are his wife so you two are more important than what she wants and she should be looking after you. Is your Mac nurse assigned from a local hospice? You should be able to talk to another nurse covering for her, illness doesn't stop for them to have a holiday after all. Can your GP or GP's surgery help you at all with sorting out some care? The GP should certainly be able to get the DN to sort the bed, it's only a matter of phoning the right department and one is sent out (getting them collected seems to be more of a problem, but I took care of that when the DN failed) Also sending you hugs and lots of love to you both, shout if I can help in anyway with advise or just an ear and a shoulder xxxxx
Hi Cheryl I feel so bad for you, I have slept in Bert's room in the hospital for almost 3 weeks they feed me every day as I refuse to leave the room even to go to the canteen. Hope you manage to sort things out for you soon Love Teri
The best advice I can offer is to ask the hospital, your GP, or the District Nurse to refer you to a local hospice - if that fails, then contact the hospice directly for advice.
If they have a bed available and, if poss, before Peter comes home, try to visit the hospice and 'check it out'. If you're happy then get Peter booked in.
Hospice's DO specialise in "making the patient comfy" and the chances are they'll let you visit most of the time.
In our experience, getting Claire into a hospice was a God send. Professional care was only a few seconds away - and this was especially important as her mobility deteriorated. Kate and I were only saying yesterday that if Kate and Claire were alone together in the house, then there was little that Kate could do to help her if she needed lifting (e.g. to go to the loo, have a bath, etc)
It's Peter's and your call, of course, but I suspect that he would physically be most "comfy" at a good hospice. I guess the question is, what would he really want - once he's had a chance to think it through?
If he does come home, then I suggest that you arrange for frequent daily DN visits (i.e. SEVERAL times a day), and consider asking for a Marie Curie nurse to be there each night (the DN could arrange this - provided there's one available in your area).
I hope this hasn't come across a little terse. Both Kate and I have been thinking about this reply, and we ARE listening to you - and these are the most practical suggestions that we can offer.
your local hospice, if Peter doesn't want to go the hospice has home care nurses
who will help. If you want to stay with peter then just stand your ground, and if there's a virus in his ward he should be in a single anyway. It seems the doctors dont know there head from there arse, i had been a cancer nurse for many years and the way you and Peter are being treated is not acceptable, what you both need now is support not conflicting
nonsense about treatment. Also i feel so angry that Peter was spoken to about his cancer when you asked that it not be mentioned, the person responsible should be on the carpet. If you need any help about your rights please PM me anytime.
