Could hospice be an option?
Sending very big hugs!
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When my mom was having health issues, I remember praying nonstop for whatever was the big guy’s plan to just please play out. It was such an incredibly difficult time for all of us. The one thing I can tell you that may give you some hope in all of this is that the memories of the bad stuff get pushed aside by the memories of the good stuff, eventually. You’ll get through this. Keep coming back here for support.
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I don’t believe hospice is really an option, as he’s not terminally ill. There’s really nothing significantly wrong with him physically. I suppose they could stop the abx treatment for c diff, but that seems inhumane. They asked about a feeding tube and we told them no.
My D20 asked to go see him yesterday, but I told her I don’t want her to. I don’t want her to remember him this way.
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Many hospice programs have pre hospice/ palliative care programs for people who no longer want aggressive treatment. Might be worth a consult.
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My father was given sedatives and ant-depressants a few times and they really did wonders for his attitude. He was that horrible hospital patient, pulling out all the tubes etc. they had going into him. I know at times they physically restrained him in the hospital bed, so they could administer medication and properly care for him.
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Mine too. Prior to anti-anxiety meds, he was exceptionally Not Himself. Kept trying to climb out of bed until they put the rails up (we had to ask, they weren’t allowed to do it without the request) and even then, I’d find him with his legs stuck, having pulled out the cannula and tried to escape. He was also convinced the oxygen concentrator was broken and kept trying to take it apart, we had to move it eventually the whole way into the hall. He spent his whole life as this sensible engineer with a lovely laugh and adored my mom and all of us – and it was swept away in days. With meds he was more manageable and I could sit next to him and read to him. My mom could stand next to him and show him magazine articles. (Before that he would glare at me and refuse to have her anywhere closer than a chair in the corner)
It is brutal. It’s okay to cry. It’s okay to despair. It’s okay to want resolution of any kind. And most of all, it’s okay to use the forum as a safe space to put all the feelings, or at least some of them. We will continue to hope for best outcomes for all of you.
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I know it might be hard to understand at first, but the medical staff helped me see that sometimes a mild sedative was not just for their convenience (i.e. calming down an agitated patient) but could truly be helpful to mom/dad. When they are upset and not fully cognizant, it has to be very scary and disorienting in their heads. To relieve them of that a little can be a blessing. Of course no one wants to see their parent “doped up” but if the alternative is in the throes of dementia or other agitation they don’t understand, it can be helpful.
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I don’t think they will stop the C diff treatment. When my mom had pneumonia, she got antibiotics. They will treat an infection but wouldn’t treat blood clots for instance.
I’m sorry he’s being so hard right now. I hope he will improve with some medication for his depression and anxiety
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I will repeat what I’ve often said on this thread … It’s OK to be ready for them to go, even if you aren’t ready for them to be gone.
The descriptions here remind me so much of the final weeks and days with each of my parents. My siblings didn’t want our mom “doped up,” but it was a kindness for her. One night she kept dh and I up until almost 4 a.m. almost crying because she was desperate to “get home to her parents.” Her parents had been gone for decades. I can’t imagine how scared she must’ve been. I can’t imagine how difficult it would be to have your loved one turn mean like your father has and to see your mom bear the brunt.
My dad was more like @greenbutton ‘s dad … agitated and trying to crawl out of bed through the rail slats (by this time he was on hospice at home), digging in his diaper and generally creating a mess.
Man, this stuff is so, so difficult. Be kind to yourself.
Oh, and one thing … personally, I would let your dd see your dad. It’s all part of the cycle of life. But (((hugs))) to you. Oh, and I agree with whoever said to have him evaluated for hospice. An evaluation couldn’t hurt.
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One has to be very careful with what a hospital considers as ‘comfort care’. It sounds like your situation was truly such - giving medication to help her be calmer and treating infections. Not so with my FIL. I can’t spell it out here because I will get censored. He was moved to skilled care later after a MD hospitalist ‘helped’ him choose ‘comfort care’ “you can make your own medical decisions, can’t you?” - after days prolonging in the hospital he died 6 days later. He did not receive ‘comfort care.’
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The hospitalist told my mom he didn’t see any reason she couldn’t go back to her independent living place. She had a large blood clot in her lung and multiple other issues. Including really high blood pressure. Besides the pneumonia.
He came while we were meeting with hospice and trying to figure out the next steps. Mom passed away 5 days later.
Someone told me that the hospitalist didn’t want to be the bad guy or deliver bad news. So he told mom that she was fine to be discharged and could go home. It was absurd.
Not to detour this very serious matter @DeeCee36 is dealing with.
There is a lot that happens. Some good, some bad and some completely off the wall!
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IMHO and based on personal experience, it depends on the hospital, the hospitalist, and how certain financial constraints with the hospital might not have the best interest of the patient at heart - and personal opinions by the hospitalist.
One cannot be too careful in various situations.
FIL had no idea what the hospitalist meant by ‘comfort care’. He had nothing to eat or drink because w/o the IV and medications (which they immediately stopped w/o family present), he slipped into semi-consciousness shortly after DH was bedside. Died 6 days later. We have no idea what his thoughts were when family was bedside and talking with him.
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On the other hand, the hospital refused my dying mother meds for pain or anxiety. I will never forgive the cruelty. So many awful things happened at that hospital. Mom was transferred to a hospice facility, treated like a human being whose life mattered by the intake staff, evaluated by a very caring doctor, and properly medicated. She died about 16-17 hours later. Sometimes, no matter how much we advocate for our loved ones, we can only do so much.
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I suspect how your mother and my husband’s father was treated is more common than what others have had with more caring/concern by hospital and hospital staff/physicians. The dynamic is with ongoing changes - can’t translate what might even had been with more compassion at a facility even a short time ago.
Caveat emptor is all I can say.
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Hope things are going ok this weekend.
Your oxygen comment reminded me of my mother’s comments when she was on it. She suggested not wearing it at night, because she only got out of breath when up/walking. The nurse explained it was important for the body to have it all the time, keep her in better health.
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DH was in his mother’s state a couple of weeks ago. He drove the 2 1/2 hour drive across the state to visit. Picked up her favorite deli lunch (per local sibling). When he arrived, MIL was sound asleep…and he said…not waking her was suggested by the caregivers. He left the lunch in the fridge, and then drove home. He tried.
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Sorry. My mom would be really mad if nobody woke her if I had visited. Sounds like that was for the staff.
She has advanced dementia. And she hadn’t slept well for a few nights. DH waited around for a short while to see if she even stirred a bit, but she didn’t. HE agreed with the staff. He could have waited for her to wake up, but apparently she isn’t in the best of moods when she wakes up. Plus, he still had a six hour drive home from there.
He did his best.
ETA…the last sibling that visited…the visit lasted about five minutes. There was a significant meltdown.
The family is trying to make these visits…but it’s getting hard.
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My MIL has those days. She didn’t wake the entire last day we were there recently, and the aide who got her out of bed and into her recliner before we got there that morning told us that she was very mad at having been moved out of bed (something she doesn’t have a choice about). We felt bad about not being able to chat with her before leaving (and saying goodbye without her even being aware we’d been there all day or were leaving) … but if we’d pushed her to wake up for us, no one would have been happy. You have to roll with it.
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i think you want to be able to look back and know thatyou tried, no matter the results. To look back and feel more sure that there wasn’t a day that she was chatty, fine, and her old self and you missed it. Someday that will be a comfort, even though right now it’s so hard.
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