The point of Hospice is to alleviate pain and suffering, My experience was just the opposite. When I returned from the drug store and told the Hospice nurse they were out she picked up the phone and went off on them. She told them they had a contract with them and that they WILL find the drug at another pharmacy and IMMEDIATELY deliver it in person.
Also my kind of nurse.
When my mother was in home hospice, they started by ordering drugs to be sent by FedEx. We spent all day waiting for that package, before FedEx admitted it had been lost. Finally, in the evening, the nurse called every drugstore in the area and found morphine, which was the only thing in the package that we really needed, and my bil went to fetch it.
That was a horrible day. My mom really needed pain relief.
I wasn’t there that evening, but i gather the nurse spent the night slowly increasing the dose, until she found a dose that worked for my mom’s pain. By the next morning, things were in much better shape. My mom mostly slept, but her breathing was much more regular and she was no longer crying out in pain. And her number one wish about how she died was to avoid pain, something she had made extremely clear when she was healthy. (And during previous bouts of life-threatening illness.)
The FedEx package was delivered that afternoon. @#€=§%! About 30 hours after its promised arrival time.
We too had rather a challenge locating the orally administered liquid drop morphine used in many final end of life scenarios.
By the time we got the scrip we should have had it a couple hours ago. And despite living in a dense urban/suburban area, the nearest drugstore with the stuff in stock was about 15-20 miles away. We sent a runner to fetch it and there were probably 40 CVS / Walgreens / groc store with pharmacy / big box with pharmacy that were closer to home. But none of those had it, so they drove however far to get to the one IIRC Walgreens that had it.
I don’t really blame the hospice folks for the delay writing the scrip; she transitioned from living weakly with a life expectancy of a couple months with no particular expectation of imminent death to “24 hours … tops” very abruptly. A mad scramble ensued.
I’m. sorry to hear she’s slipping so quickly. I mean, you knew it would happen at some point but it’s still a hell of a shock when it finally happens.
I’m glad hospice is being helpful.
They were involved with my father’s care (prostate cancer) and would have been involved with my mother, except she was already in the hospital and took an unexpected and rapid decline. It’s such a mercy being able to be at home, too. FIL had a massive stroke and was hospitalized when they decided he would not recover, so they moved him.to a hospice wing there - which just felt weird and lonely. Not that he was aware of anything, but being alone in a room just felt wrong to me. Someone from the family stopped in for a little while each day. I think I was the last family member to visit him there.
Your parents are truly lucky to have you and other relatives nearby to look after them. Do take care of yourself - I know how exhausting this is, and it’ll catch up with you at truly odd and surprising times.
Not much of an update today, because not much changed. Mom’s respiration is about the same as when I left yesterday. Still not mottling on her feet or legs. The increased morphine and Ativan are doing their job. She reacts when we come in and talk to her, but otherwise is resting as peacefully as possible.
Trustbridge, the hospice company we are using, has a local warehouse. Equipment and drugs are in stock there, and get delivered within a few hours. At least, that’s how it’s worked so far.
I jumped through some password reset hoops today and made sure my sister and I have access to a few important accounts. Since tomorrow is a week day, I can finally start on a few other action items. I need to call Dad’s podiatrist and schedule his next appointment - I took him there a few weeks ago but Mom was going to follow up with the scheduling. I also want to call his dentist and find out when he’s due.
I do know that I can’t keep this pace up. My sister and I will have to start doing shifts, or shorter visits. We’re getting very comfortable with the new live-in aide, so the more we find we can trust her both with Dad and with being our eyes and ears, the less we feel that we have to be there so much. I’m so glad that my job gives me the flexibility to handle this. My sister may file for FMLA tomorrow, because she isn’t quite as lucky.
For now, I’m home, and finding dinner. And chatting with my friend at Disney currently enjoying the after-hours Christmas party that I’m not at.
Mom was basically non-responsive today. Didn’t react when they repositioned and cleaned her. Didn’t react when my sister and I talked to her and when we said goodnight/goodbye.
Dad has a virtual doctor’s visit tomorrow morning. I wasn’t able to reschedule it for any time in the next two months, so I’ve just been holding on to it. If Mom passes overnight, we’ll cancel it. If she’s still hanging on, Dad will be in good enough shape to join the call, and we’ll get it out of the way.
The aide just called. Mom is gone.
I called my sister. We are going to head up there, wake Dad up, and tell him.
RIP Mom 
Deepest condolences for such a profound loss.
i’m so sorry. may her memory be eternal.
I’m sorry you’re all going through this. May the memories of better times sustain you.
My deepest condolences.
Sorry to read this. You have a lot of courage. Take care of yourself.
I am so sorry.
Even when expected, it’s always hard.
I’m sorry for your loss. My her memory be eternal.
StG
I’m very sorry. I’m glad she was able to stay in her own home to the end, though.
Thanks, all. Today was a very long day. My sister and I got Dad up, and let him know what happened. We asked if he wanted to see her - he did not. We chatted for a few minutes, and he asked to go back to sleep.
The funeral home came while he was sleeping, and removed the body. She’s being sent to a local medical school as a body donation. I know this probably means some medical student is likely to dissect her. But it contributes to future education, and it’s a final gift from her.
Dad is trying to be strong, but his emotions come through. It’s going to be a rough ride. I’m so glad we opted for a live-in aide, and not assisted living. He needs someone right there with him.
Personally, I’m relieved. It’s been a long haul, and as brave as Mom was through so much of it, I know it took a toll at the end. She passed peacefully. She was basically unconscious for a week, so I did much of my grieving during that time. I did just about run out of energy today.
My sister is going to pick up the baton for the next few days. I’m joining my friends for the last two days of our annual Disney trp. I definitely need the vacation. Then I’ll come back and dive back into the finances, making sure that none of the recurring bills fail while Mom’s accounts are in transition. And next week, Dad has a handful of appointments in the same facility that we went to for Mom.
SIde note - I sent a courtesy note to her doctors, through the hospital system. Most of them replied similarly. Her oncologist, however, called me personally and chatted for about five minutes. Very classy, and very much appreciated.
One more thanks to everyone who chimed in with support and advice.
My condolences to you and your family, Digital. i hope that the short Disney trip can help you recharge a bit.
I’m very sorry for your loss. May her memory be a blessing to you. And I’ve changed the title to reflect her passing.
I’m very sorry for you. I watched both my parents and my oldest sister go through hospice and it’s tough. I’m glad you had such capable and committed people caring for your mom.