My beautiful "Biobro" departed this world on Monday.
He never had pain from his extensive bone mets, and in the last weeks was on low doses of ibuprofen and gabapentin.
He ended up on hospice which I would not recommend as they were essentially indifferent and incompetent. I took him to the ER on his last day to get him cathetered for a blocked bladder because of which he was in agony. Hospice nurses couldn't manage to do this and were happy to morphine and Ativan him "out" even though we had told them in admission that he didn't tolerate morphine . They pushed back hard at me calling 911 and were really tacky when the ambulance arrived. But ER got a catheter in in 60 secs, he immediately relaxed and I brought him home where he slipped away, without pain, and recognizing me and responding to me to the last 2 hours.
His last five weeks were magical. Dexamethasone kept brain swelling at bay. Colleagues, friends and family came in from all over. He had a birthday party with family and laughed and dished science until 2 days before his death.
My main take away from this time is get good private aides to help you at home if you have the resources. We lucked out and got a Cuban doctor who is working as an aide to improve her English before slogging up the medical ladder here.
Also, if all treatment for the cancer has been stopped consider putting a catheter in place at the first sign of diminishing urine. The prostate is likely growing. He went from fine urine to nothing suddenly so I didn't have warning but the problem was obvious, but hospice was only too happy to regard this as kidneys shutting down and to make only half hearted attempts at cathetering. I knew my rights and pushed back. They intended to let him die excruciatingly, shoving morphine at him, then Ativan to mitigate the agitation caused by the morphine, when they had been informed on intake of his wish to have fentanyl only and only at the last.
Finally, at least 4 health professionals have expressed horror that a) a nurse couldn't get a catheter in and b) they would consider medicating alone for what essentially amounts to an easily fixed "mechanical" problem. At the ER he had 507 ml of urine backed up.
RIP.
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Biobro
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My heart goes out to you❤️🩹 for the loss of your loved one.
I am truly sorry for your experience with Hospice care. My hubby is in it now. His mother and brother both used hospice care and they were both very well cared for.
Your anguish and his pain should have been avoided by them. I’m glad you knew to take control over the situation and advocate for your husband until the end.
Be at peace with yourself as you did the best you could with this monster of cancer.
Thank you MouseAddams. I'm getting to peace slowly. We were very grateful to his oncologist who basically said nothing more to do, but offered to see him through to the end. Had palliative care not completely collapsed, we would never have been on hospice. But it is what it is. It was a bad month in the city and the medical services were overstretched.
Thank you for taking the time to share this important information. I am so sorry for your loss and for the unnecessary additional stress you have had. Take care.
I'm so sorry. We had some of the same issues with Hospice that has left my daughters and I traumatized. I promised my husband he would not suffer, and he did suffer.
So sorry for your loss. It's disturbing to hear about your hospice experience, but we all need to know about these issues and be ready to respond. Thank you for alerting us.
I am so sorry you had to deal with an incompetent and uncaring hospice situation. Your husband was so lucky to have you as an advocate! I am so glad you were able to navigate and recover from that stressful situation and go on to experience some wonderful and memorable times with family. Sending much love and prayers for you and your family’s healing journey. 💕🙏🏻
I'm sorry to hear this for many reasons. How kind of you to warn others as to what can go wrong, even at this difficult time. I'm glad he wasn't in pain.
Thank youTall_Allen. Also for all your good counsel Ithis board. It was amazing how little pain he had given that his bones were like cottage cheese and he had a 3 cm met in his skull..
I’m sad that you and he had to endure such horrible treatment and my heartaches for your loss.
After reading your post I feel fortunate that my husband has such a wonderful, caring and competent hospice team. I’m going to hug them all when they visit this week.
Sorry that you had this experience and pleased that he had the end without pain. Thanks to you. You showed amazing bravery and did the right thing all the way to the last. I hope you can take some comfort from that and from those otherwise lovely last weeks together.
It sounds like some wonderful memories were made in his last five weeks. So sorry you had to deal with some unpleasant hospice. I've taken care of my dad, sister-in-law and dear friend while they were in 3 different types of hospice over the last 3 years and have also learned a bit. All of those were wonderful experiences, but none had Pca- so thank you for sharing about the possibility of pain as prostate blocks urine causing pain. I'm hoping all of the good memories give you comfort in your loss💙
Trouble is everyone's journey is individual, while indifferent hospices offer morphine/Ativan only. They have their place, but not by any means for everyone.
I’m so sorry for your loss and for the struggles you two experienced.
Thanks for the reminder that hospice workers are human, too, and that - like everything else, some are better than others.
My experiences with hospice were very different. I would have been lost without them there to help usher my loved ones and to support me through their passings.
AND I’m reminded that I get to be the advocate my loved ones are counting on me to be, regardless of what the professional thinks.
Thanks for taking the time to share.
I’ll hold you up in my prayer time, asking for your peace and comfort.
Very sorry to hear of your loss. My only experience of a hospice was when my mum had advanced ovarian cancer (I'm in the UK). She wasn't really in pain but had panic attacks at night. As far as I can tell, all they did was to sedate her with a "driver" which basically put her into a permanent coma and kept increasing the dose until it killed her.
I suspect that many many people are over medicated. I had to fight tooth and claw to get tramadol for him when the meningeal involvement was causing migraines. Tramadol worked and he took 5 pills total over a the first week. Even then, they were pushing liquid morphine.
Thank you Sisira. GADrummer below points out that PC patients need a different type of catheter and looking back the ER had the right one, but hospice didn't.
PSAed, thank you. I think GAdrummer below has discovered the reason. Hospice was trying to use the wrong catheter for a PC patient. The ER clearly had the right kind. That said, I really only stood my ground firmly because he didn't tolerate morphine. Had he been okay with it, the pressure to "ease" him "out" would have been overwhelming and he would have died in underlying pain and without the final precious hours of knowing he was loved and cared for.
I am so very sorry for your loss and deeply saddened by his and your experiences at the end of his life. Thank you for this warning and I am grateful he had you by his side. My caring thoughts go out to you and family.
WoodChuckHill, Thank you so much. To add to the warning, GAdrummer below has pointed out that PC patients need a different type of catheter to the usual kind and the ER clearly had the right one. Good nursing would have known this, but that's precisely where hospice falls down.
I'm so sorry for your great loss. Thank you for the warning about hospice. I've been somewhat down on them after using them for my father many years ago. Bless you.
Thank you DesertDaisy, the irony is that we had no intention of going on hospice despite much pressure from the system. I had palliative care and Medicare home health lined up plus we had a really good private agency. But the palliative care company collapsed completely, leaving about 200 families in the lurch and I was concerned for his safety and also for delay in pain meds should he need those in a hurry. Also, in the limited time he was on palliative care, they were pushing morphine too. I had asked for a step up from ibuprofen and gabapentin and got 2 drops of morphine suggested. Um Tramadol anyone?! Let's not forget, morphine is cheap.
I'm so sorry for your loss and your poor experience with hospice. Thank you for sharing your experience. Sending hugs and wishes for peace to you and all who loved your husband.
I am so sorry for your loos and for what you had to go through during his last weeks. Thank you for sharing this useful information. I am sure it will help others on this forum.
May you find peace in your house of someone you took time to be there that is the ultimate blessing and sharing.HU has been a coping mechanisms for those who choose to find advice and healing.May you reach serenity in your path of time
Very sorry to hear of his death and your loss. Nice to know that except for the incident where hospice denied him a catheter that he was otherwise without pain. It’s comforting to know that for me and I am sure many others on the site. Thank you for posting this. Condolences!
In time smiles at good memories...sorry the exit was not a good experience...why i will administer my own when it becomes nec......he was lucky to have you....bw..
God bless, and thank goodness he had you to fight his corner l have incurable ovarian cancer and recently had yet another operation 🙏 to which l expressed no morphine it makes me violently sick. Morphine doesn't agree with me at all. So sorry you had such a harrowing experience xxx Sheilaf
Sorry for your loss of such special person. Glad that you have detailed all of what went on. Unfortunately, I have heard and seen the same. My wife was basically killed by "the health care system ." I fought every inch for her, but it beat us. It took 67 days. I see it for the most part as a lack of compassion and greed.
I am very sorry for your loss and the hospice worker that made things worse.
Last month when my husband was in ICU at the biggest local hospital, a male nurse was tasked with obtaining a urine sample. When my husband could not perform upon demand, the nurse got a catheter and was very surprised when he could not reach the bladder despite numerous tries. Finally he got a different catheter that worked like a charm, the kind they use for PC patients. The nurse then checked the chart and realized his mistake and promised to always ask male patients or family if PC is part of the medical history before selecting a catheter. One little question could have saved time and avoided added pain.
GAdrummer. Oh, thank you so much. The ER used a huge diameter catheter with no problem and I just googled it and came up with a Coude catheter being what's necessary. Hospice came with completely the wrong equipment. No wonder the nurses couldn't insert it. The classic ones just hook into a pocket and don't get up into the bladder. Lesson: as you said, always make point of PC and ask for the correct larger softer catheter.
So sorry for your loss and your unfortunate hospice experience. In retrospect, I think something similar happened to my mother, that she was morphined out for her last two days even though I don't think she was in much pain, and we couldn't communicate with her, which I kind of regret now. Peace!
So sorry for your loss and the trouble with hospice. Unfortunately, ever hospice experience seems to be very dependent on the individual care takers you get. God bless him and you, my prayers and love to you both.
My heart goes out to you. I'm so glad you went to bat for him rather than just roll with with what was happening. That inspires those of us as caregivers to stand up for our loved ones comfort and care. Thank you.
I am very sorry for the added trauma and pain you and your husband went through because of incompetence and indifference. These people need to be routed out. I hope you registered a written compaint the hospice organization.
I am also sorry for yoru loss and hope you have many fond memories to hold onto.
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