That is exactly the promise of home hospice. My mother was a widow, but she died at home, in her own bed, in her own sheets, wearing her own clothes, holding her daughter’s hand.
(It wasn’t as peaceful as i would have liked, but that was from the covid. The medical interventions helped a great deal, and improved her peacefulness, mostly by decreasing her pain.)
The hospice nurse was supportive, and never got in the way of her children being close to her. Her primary function was to administer the morphine that my mother desperately needed.
Also, rather to my surprise, the morphine didn’t shorten her life. Her oxygen level actually improved after we finally got her pain under control.
I have hydromorphine tablets for him. They were prescribed for pain, when he was last reminded about the cancer, and could feel it all. I’m already managing his pain, mostly just overnight now, so he sleeps well.
You can understand why I’m uncertain there’s a contribution they can make, beyond disruption. But I have to stay open minded, we’ll go hear our Dr out on the issue anyway.
(Unfortunately I think a lot of this is about who gets to prescribe the pain meds, if I’m honest.)
Fwiw, the social worker who stopped by was incredibly helpful to me. I don’t think she talked to my mom, who was basically out of it when she visited. But she gave me good advice about how to care for myself.
My mother’s doctor was still involved after hospice started, although yes, the hospice doctor was first in line to write scrips. My mother couldn’t swallow pills (or anything else) at the end, and the nurse drizzled oral morphine into her mouth.
That’s a lot of it. Because somebody has to do it, the medical industry wants a clear definition of which doc is in charge of any still-living patient and the DEA’s enforcement of prescribing history is different for a) hospice docs, b) oncologists, and c) pretty much all other MDs.
There are also some no kidding last-hours drugs that can ease the passage which are not within the normal scope of practice of even oncologists but are for hospice docs.
I find this confusing. Are they coming to confirm if he’s terminal? Based on…what exactly? How he looks or seems? How he responds to questions? With a dementia patient? Or his actual medical records of the urologist/ oncologist specialists we’ve seen? If it’s the latter, why come by to point out, in case he mercifully forgot, he’s dying of cancer? Ugh.
The main thing about hospice care is that the patient is seeking comfort and pain relief instead of actively and aggressively pursuing a cure. I suggest you talk to a hospice agency and find out how they can help you and exactly how they would operate in your home. I sense that you are picturing a medical person (or group of them) who will invade your home and get between you and your husband during his last <period of time>.
Ask them up front to tell you all about hospice and what it is. They do this every day and may think everyone already knows. Plead ignorance and insist on being informed completely before you proceed. If they are impatient or disrespectful in any way, find another agency.
I’ve known a few people in your situation and they all sang the praises of the hospice team. Far from interfering, the team stays in the background and provides support and backup for you and the patient. I’ve not heard complaints about hospice care in general and most of my friends who’ve used hospice services say they wish they had done it sooner.
Yeah, there is the official requirement that the patient be “terminal within 6 months,” but my good friend’s husband was on home hospice care for two years before he died. She has told me that when hospice came in, ALL she had to think about was being with her husband. They took over medication management, doctor visits, paperwork, and all the things that HAD been taking her away from her husband. [ETA: They did things like bathe him and help him transfer from bed to toilet to sofa. My friend felt like at last she had really useful support in caring for him. She could focus on him and being with him.]
And my other good friend’s mother had home hospice care for months, and then she got better, so they discontinued it. (She did die a few years later.)
Become informed about the reality of hospice and make your decision based on that, and based on what you feel is best for you and your husband.
I’m so sorry y’all are facing this. When my husband died, I told myself, “billions of people have gotten through this and if they can, I can.” It was very hard and took a long time but eventually you do get through it. Somehow.
In my experience, hospice didn’t come at all until i (my mom’s medical proxy) asked them to and her primary care physician agreed that she was terminally ill. I’m one of the many people who wish I’d engaged then sooner. That would have meant she would not have had an infusion to attempt to protect her from the covid infection that killed her anyway. (Which is why i didn’t – my brothers weren’t ready to give up, and wanted life extending treatments to continue.) No one actually examined her for the purpose of declaring her terminal, they made use of the information they already had from trying to treat her.
Fwiw, my mom had some dementia but also knew she was likely to die of the infection. So i guess there wasn’t a risk of “pointing it out”. Also, my mom had expressed on many occasions that was ready to die. Your situation sounds different.
When my mom entered home hospice, i (as the medical proxy) had a long phone call with the hospice physician, and we went over her list of medications, and he decided which to continue (those that made her feel better) and which to discontinue (those that were intended to prolong her life.) He never actually examined her in person, he talked to me and the hospice nurse, who did mostly supportive stuff around the house.
My mom was actively extremely ill, so the nurse was mostly there, in the house, caring for her. She did things like turn her over to avoid bedsores (my mom wasn’t able to move on her own at that point) and help her breathe. And give her liquid morphine to control her pain.
They also sent a social worker, who mostly helped me, and a chaplain who determined that my mom didn’t really want any religious care and went away.
We got a diagnosis today. Based on the high levels of immunoglobulin light chains, they are assuming multiple myeloma, and initiating treatment. He’ll be transferred to the larger hospital tomorrow. (Or possibly sooner, but most hospital rooms become available in the morning.)
They finally biopsied the large tumor (4.5 x 2.7 mm) on his spine today, and the results of that will guide future treatment. I gather we’ll get some preliminary results from that in a couple of days, but they also grow out the tumor cells, and do DNA analysis on them, and that will take a week.
Also, googling, it looks like light chain multiple myeloma is uncommon, and it’s more usual to have both light and heavy chains. Dunno what that means for treatment or outlook. I’ve read a couple of articles and studies, and they give varying answers to that question.
Best wishes puzzlegal, and I hope things go well. Having a loved one go through cancer treatment is very stressful, so please do your best to take care of yourself as well as your husband. My wife’s illness and death was the hardest thing I ever went through. I hope things go better for you and your husband than they did for me and my wife.
It’s lambda light chain. I have absolutely no idea whether that matters for treatment, prognosis, etc. But the oncologist spelled the name of the letter to me, so it clearly matters to them.
When I was diagnosed with breast cancer last year, both my surgeon and my pharmacist sister told me do not google. I held out until I got the pathology report from my surgery and needed to look up a few words.
Different people process things differently. I will be googling extensively, and probably buying a paid subscription to “uptodate”. The comment above about the rapid improvement in treatment was extremely valuable. Most of the really depressing stuff is old.
I’m with you. I want to know everything and sort it out for myself.
When I had breast cancer, I was on several mind-bogglingly informative message boards. Like here, other users/readers/clients/patients do plenty of research and can steer you to information you might not find on your own.
