That’s a good question and I don’t know that we know the answer. Guessing, we tend to associate the heightened agitation with decreasing 02, which is maybe an indicator? No real idea, and the hospice staff are not really doctors or RNs so questions like that get vague answers until the RN is there. (3x wk)
With his complex suite of failing systems, it is just as likely there will be an abrupt stroke or heart attack or embolism as some kind of discernable descent. Mom already signed the DNR/DNI order, which is what he wanted. The ativan is necessary – he wakes screaming at night over various hallucinations (which he and mom call nightmares) and cannot be comforted.
In the hospital after her fall, my mom was trying to get out of bed and was pulling at her IVs. They put her on Seroquel. Helped a lot.
My dad was on morphine his final three days. Hospice gave it to us to use as the end approached.
I’m sorry, Yes, this is all distressing. Our hospice was really clear with us that he was transitioning so maybe that’s why they haven’t said anything about your dad – because he’s not there yet? Hospice told us that he might go this weekend (this was a Thursday). On Friday, she said that he likely would be in her charts on Monday that he had passed, and he was. He died Saturday.
My mother resisted morphine til the last few days, then quarter dose (she was 85 pounds then). I was ok with that since a friend said that her mother really was no longer coherent once she started on morphine - probably it depends on patient/dosage factors.
“how close is the end coming, most likely?” - One hospice nurse told me that one clue is the pace of decline. If you see rapid decline from week to week, maybe only weeks left. Similar for daily decline. Made sense, but it may have been specific to the one heart situation.
It’s very chicken-and-egg, and since this is residential hospice care, we aren’t there all the time to catch the more calm moments. I would say the intensity isn’t any worse, but the frequency probably is. The ativan doesn’t seem to make much of a difference although it makes him groggy the next day.
i was there and had a perfectly normal, albeit slow, conversation with my father about the history of Boston. He chooses what TV show to watch and has clear favorites, or will decide “that’s enough” of the news and ask for something new. Otoh, the next day he was convinced Mom and I had died in a car accident, to the extent his nurse called the house at 6:30am so Mom could talk to him. “Oh” he said “guess that was a nightmare”
Sometimes I think it is Mom’s presence that sets him off – like he is trying to get back to her but can’t find the way. I can’t imagine, however, telling her that she needs to curtail her time with him, now.
Mom got morphine in a syringe under her tongue for pain. It was a tiny dose initially and not enough for her cancer pain. Fortunately they were able to increase it to better control her pain but then she was unconscious and passed away shortly thereafter.
Sometimes we are at our worst around those we can trust the most.
Sorry your father seems to be releasing his anger and probably anxiety to his spouse.
I was talking to my mother in law, she worked a long time at a residential facility. As the floor RN. She made the comment that it’s very hard on the floor with men that can be violent. That there were a few of her aides that had career ending injuries from a patient that overpowered them. Not the patients fault but it’s an issue.
So I guess I want to give some grace to the care facility. They want the best but they also don’t want them or the patients loved ones getting hurt.
This is very familiar. My mother might talk about politics and then want to go home to her mother and father a few hours later. For her, Ativan made it worse because she was so much foggier that whatever cognitive defenses she has crumbled. But again, this was during her last months when I declined it but not her last week.
We actually had a talk with MIL and asked her to tell her H that it’s okay to go when he’s ready. They had made some ridiculous agreement about how she would go first & then he would follow soon after. Obviously, life doesn’t necessarily work like that, but we suspected that he was fighting the end because he was worried about leaving her alone. She talked with him about their life together and how much she enjoyed it. Then she told him that she will miss him, but she will be okay, when/if the time comes. He honestly seemed to relax after that. Maybe if your mom could bring herself to do it, a quiet talk with him about the wonderful life they’ve had together, with some assurance that whatever happens down the line, everything will be okay?
I repeatedly told my mom she was very loved but she could go and join dad and all her loved ones in Heaven and we’d join her when it was our time and we would all be fine.
There are geriatric pharmacologists and geriatric psychopharmacologists that can be very helpful with medication dilemmas. When my mother was on hospice, I asked to speak with a geriatric pharmacologist in an effort to manage her pain (terminal cancer) while optimizing her ability to be engaged (death not imminent). It was a very helpful consult. Seniors may have lots of sensitivities to meds, side effects and drug interactions. Psycho/pharmacologists should be well versed in assessing the potential causes and best way forward with agitation. It can’t hurt to ask what resources are available through hospice. Once I asked, they connected me with this specialty. All the best. This is so challenging.
Back from my folks; they are giving Dad Ativan and Seroquel, twice a day, with a third dose of Ativan as needed but his caregivers are not fans of that and are doing everything they can to distract him instead. But the other day he was removing his 02 and tying the tubing in knots, and when I was there his waking moments were mostly filled with trying to roll out of bed and/or imploring (thru gesture and garbled snippets of speech) Mom to help him.
He can’t feed himself, and while he is aware of who we are, and still offers a smile, he’s increasingly semi-conscious. I go back at the end of the week if not before. His favorite LPN made a birthday cake and they were going to have that, today. (He turns 88 today)
Hang in there @greenbutton . This is the most stressful time. I tried to do/say things in the months leading up to my father’s death so that I would have few regrets after he was gone. I didn’t want to berate myself with things like “Why didn’t you tell him you loved him more often?” (Or whatever).
My mom came to adore watermelon in her last months (choose it over her beloved ice cream options). It was sweet, easy to eat… with lots of liquid. Since then I’ve found that other elderly friends have liked it too.
I am so sorry about your dad’s current state and for your mom, you, and all family members. I agree with @cinnamon1212 's reply, this is a very difficult time and I did the best I could to make sure I didn’t want to have regrets doing what’s best for my dad. He was also on hospice (at home) for about 6 weeks. In that time, the goal was to make him comfortable as best we can. It was also my goal to help my mom as much as I can because it was so very hard for her to see in his condition 24/7. Hang in there, hugs to you.
From the article: “CMS makes it very clear that during the hospital-at-home stay, hospitals are not to use family members, support persons, or caregivers to provide care that would otherwise fall to nurses or other hospital staff during an inpatient admission,” said CMS chief medical officer Lee Fleisher in a statement provided to NPR."
Seems impossible to meet this standard if there isn’t someone other than the caregiver there!
From the article: “For decades, hospital-at-home was a small-scale experiment.”
My dad was part of this experiment back in the '90s. He was given a choice to wait for his transplant organ at home or in the hospital. He chose home but was on major IV meds that required daily monitoring. He had daily nursing visits, sometimes twice/day plus HHA three days/week. Thankfully he was still ambulatory but it was pretty scary for my mom but she was relatively young and healthy at the time (late 50s). They did train her on unblocking lines, silencing alarms, etc… He waited 6+ months for his transplant.
Definitely pros and cons and depends a lot on the family/caregiver situation.
Being at home vs hospital would minimize chance of infection.
I feel it would be a lot less stressful for caregivers, actually, versus spending time in the hospital room.
I hated it when my mother was in the hospital. I had to chase down help, and try to catch doctors who rounded early. Not to mention the hours in the room.