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 and Julie,
You're never far from my thoughts right now. I am re-living the journey with you.
I'm so sorry Julie, but we all know in our heart of hearts that "what will happen" is something we can't predict. There are too many variables. Even a few days before Claire passed, we didn't know that it had spread back to her bowel and would cause a blockage.
For what it's worth, my understanding is that Ian's confusion is consistent with the toxins not being removed by his liver, and that the confusion is likely to increase - if this is right, then I hope that you have as many quality conversations between you as possible in the coming time.
I wish I could offer you and your husbands more, but I offer you all I have. My love, prayers, and strength.
Thank you Gary for that. I think it is time for Ian to be admitted to the Hospice. Last week when i mentioned the hospice he didnt want to go and i had to respect his wishes. Over the weekend however, things have got a lot worse and Ian is no longer able to make any sense at all, he cannot now speak to anyone on the phone, he is increasingly disorientated and i dont think he even know who i am anymore.
I have had a hospital bed delivered today plus a wheelchair, but i feel it is now too late for all of these, i could have done with these weeks ago. The day has been so hectic with comings and goings and poor Ian just doesnt know whats going on around him. I feel he deserves better than this, we are NOT achieving our goal of making him comfortable, all i want is some peace for him not all these people coming to the house and things being delivered.
I am going to ask our GP tomorrow if he can be admitted, for both our sakes, i do worry though that if anything were to happen and i wasnt there i would never forgive myself but i know i cannot carry on like this, i havnt eaten at all today, Marie Curie Nurses havnt turned up the whole thing is a shambles. NOT the peaceful journey i want for Ian.
I will keep you posted on what happens but i think Hospice is the best thing.
From my personal experience, I think your choice makes a lot a sense. Of course, not all hospices are the same, but "our" one would let Kate, Rob, and I stay there 24/7 if we wanted too.
You might want to check that out, and pack accordingly.
I understand the not eating. But, remember how we all want our folks to keep eating? You owe it to Ian and yourself to keep your strength up. Please try to get something in you on a regular basis - yogs, cheese, apples, alpen-type bars, even junk food. And drink lots too - the brain needs hydration.
The possibly consoling thing is that if Ian is "out of it" then he's being spared this part of the journey.
I'm with you every hour, every minute, every second.
Once again, sorry for not getting back to you all individually but don't seem to have too much time at present. Thankfully Peter came home last Thursday. After a very bad week with the INR levels rising alarmingly, even though he had been taken off Warfarin seven days before it went from 5.8 on Monday to 10.8 on the Tuesday so had to act quickly by giving him a Vitamin K injection. This duly worked and by the Wednesday morning it had come down to a reasonable 1.7. This though was now too low to do the Pleural Tap the blood was too thick so they decided to syringe the one half of the lung and drained 1 litre of fluid from it. It made a significant difference to Peter's breathing but they did say that it would fill again. This has now happened unfortunately and he is suffering from heart failure.
Once he had the syringe driver fitted in hospital last week the pain eased and the sickness was much improved. Having to move him from his bed to a chair and back again this week causes him a great deal of exertion thus causing him some sickness still so yesterday I took it on myself to say, enough is enough and with the help of the District Nurses coming too and fro we are now nursing him in bed. The Doctor came today and has agreed that it is in Peter's interest to move him as little as possible. He spends most of the day sleeping, he cannot eat anything but is taking in plenty of fluids. He has no idea he now has malignant pleural effusion to add to his list. He still thinks it is pneumonia and this is the way I wish him to think. After 40 years of marriage I know exactly how he ticks and he would not be able to cope with this extra worry. My job at the moment is to keep the house calm and as normal as possible with plenty of laughter and fun and the family are doing a wonderful job helping me. I have brainwashed him into believing his weakness is due to lack of food and we have to be patient and take one day at a time. It is a very sad time but we are making the most of it.
I wish Peter's update was a happier one and am sorry if you find it upsetting. The Palliative Nurse in the hospital asked how I was keeping in touch with friends and told her of my updates the the reason for sending them. I could not cope with having to phone them all individually to inform them of Peter's passing when you hadn't any idea it was expected. She did say I was doing the right thing! I hope you agree.
Today the DN's came and fitted Peter with a catheter so this will be better for him and also for me because it is so stressful trying to get him in and out of bed. Julie, I quite agree with you about the time scale but it is impossible for them to predict this as each patient has some sort of strength or weakness to change the outcome of time. I absolutely hate the evenings and nights and keep looking up to see if he is still breathing. I now have the added thoughts of do I want to sit with him, just the two of us, till the end or should I call the girls so they can share his last moments. I want to be selfish but I know this is quite wrong and would feel so guilty about doing so after the event.
Oh boy, so much to think about but on the other hand could I have coped with him going out the door and not ever returning again having had an accident or a heart attack or something? At least we have had a chance to show our love for them. I wish you well with your predicament with the hospice. I am going to try to keep Peter here with me as long as I am able but I am perhaps in a better position than you having my girls living so close. I am sure you will have his best interests at heart when you decide one way or another. As Gary quite rightly said, you can stay there with him too.
Hugs to you and thanks to all who have joined in this discussion, trust me, I appreciate every single comment.
Cherryl i cant say much as tears are flowing and i thought i was having a good day, i just wish ju would have the syringe driver, i cant bear waking up in the morning to see if hes still with me , this cancer is so so cruel, i cant say any more but my thoughts and my love are with you, jenni xxxxxxxxx my love to peter :) xxx
