My dad has been paying for 24/7 aides for quite awhile. He’s doing well enough that he convinced his patient advocate he can do without an aide from 11 pm until 7 am. Cutting his costs by 1/3 will be nice! I hope it goes OK. He’s in independent living, at least, not in a house.
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I believe my father is enjoying the attention of the young ladies helping him. He would miss the human interaction if a robot handled those tasks.
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That’s great that it will be a cost-savings, if he is able to manage it.
For my dad, the rate is $38/hr, minimum of 4 hours, or $395 for 24 hours, so even if we thought my mom could manage being alone with my dad for the overnight, there is no cost-saving to be had.
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So, this week, physically, my mom is getting better. Moving onto the next step toward getting the trach capped and eventually removed. Doing PT and speech therapy to speak/swallow. Past couple of days she seemed happier, more positive. Well, today she met with the hospital psychologist and now is back to I want to die, stop the feeding tube, have no intention of living. And my sibling says, she is determined to stop eating. She is willing to go one more week, because the whole family can’t be together until next Wednesday, but apparently her plan now is to tell everyone next Wednesday together that that is it. I just don’t get it. Isn’t this just announcing a suicide plan? She is improving, she can get off the tubes, but, what, doesn’t want to? So, she plans to die? I just don’t see this as refusing treatment but an intentional suicide plan.
She also said she wants the psychologist to tell my dad directly, she doesn’t want to. This feels totally nuts to me. I don’t see how to support this decision, I guess we will have to see how this all plays out next week. I assume the hospital won’t just up and remove the feeding tube without a proper hospice procedure in place. Especially since euthanasia is illegal in that state, and this feels awfully close to assisted suicide. This rollercoaster is awful.
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@MamaLilKat That sounds so horrible! and hard to navigate.
Cyber hugs and remote support being sent!
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That is a tough situation. Perhaps the psychologist can help her find some good reasons to persevere.
My sister called my dad the other night while his lady friend was in the room. Dad was trying to talk about LF, but instead kept using my mom’s name. He would stop, like he knew it wasn’t right, but couldn’t remember LF’s name. 
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Obviously, I can relate to your situation and sadly, I don’t have much advice. I will say that the situation with my dad seems to change wildly from one day to the next, so it is entirely possible that between now and next Wednesday, your mom will vacillate wildly on the topic. It is enough to make your head spin.
My dad has gone days with refusing food and liquids a couple of times now and just as we’ve resigned ourselves to him passing, he rallies and requests a meal :shrug: Like I said, my head is spinning most of the time.
Are you or your siblings able to talk to the psychologist that she met with?
Sending hugs and hoping today is a better day for her (and you).
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I might as well give an update here. As I have said, the situation changes so dramatically from day to day I have hesitated to update too often. That said, after two days of refusing food again and being awful and mean to my mother, my father seems to have flipped a switch again. As of yesterday afternoon, he was more pleasant, eating again and requesting to have in-home PT. I spoke to him on the phone this morning (he has not been able to speak clearly enough for a phone call since before surgery) and he sounded clear as a bell. He told me he was encouraged because last night his vision was very clear for a few hours and he was able to watch the news. He commented that he was probably the only man in America not watching the Knicks game, but he felt it was more important to get caught up on world events 
. In short, he just sounded like my dad again.
When I got back on the phone with my mom, she said that he had agreed to go to rehab (at least, he’s agreed today, who knows what he will want tomorrow). She was arranging to have a PT assessment done and to have a visiting physician (?) come and see about taking him off of hospice and prescribing acute rehab.
I have learned not to pin too much hope or despair on the occurrences of a single day, but I do take every opportunity to enjoy the good days when they reveal themselves. Today feels like one of them. 
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Has the psychiatrist suggested/dad accepted antidepressant meds? Lexapro works fast–like 2-3 days fast. I am sure this came up but just a thought in case it’s helpful.
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Mom fell out of bed twice last night. The A/C in the facility has had a brownout and is inoperable so they are putting fans in all the rooms. And Preferred is reporting that when he was there the other day, he’s “pretty sure” she didn’t know where she was.
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Believe me, it’s more a roller coaster for her than you by a long shot. She’s all over the place and (sorry) talking about her specific troubles with a hospital psych probably didn’t do much except put her brain in gear to focus on her present troubles with doom and gloom rather than a future where she’s improved. When she gets back in a good place protect her.
Stay positive! You’ve got a timeline now to remove the tube. That’ll be a huge milestone. She’s giving it (and you) a week. If it ends up taking longer give her very good reasons to bear it awhile longer. Always be positive and strong (for her). Make sure she actually gets some sleep in the hospital. Please stop thinking she has a suicide plan–that’s emotions talking.
And refusing to take nutrition is a good way to reclaim some independence that is now seemingly out of her control. Explain she needs the energy to improve ( and everyone wants her to) and then find some other thing that she CAN control and make decisions about. I don’t care if it’s her schedule, if you wear red or blue to visit her–doesn’t matter. Ask her how her bills work or what plans she has for the garden. Anything. Engage her.
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Anesthesia can also mess with the brains of seniors. It can affect mental status, usually temporarily. This has to be really frightening to someone who has always enjoyed good health. Agree that medial staff need to encourage her to do what she needs to in order to gain the best recovery possible. Does she have an existing DNR or directive that offers some guidance about her “in case of…” scenarios? That might help redirect her to what her thoughts were pre-op.
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I know we’ve mentioned it here before, but I’ll repeat that it is good to be on the watch for possible UTI with senior parents. It seems quite common with the elderly, which I guess makes sense since they might find it hard to get to the restroom when weak or sick or hospitalized.
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@Sbinaz I am so sorry for your profound loss. I’m glad to hear of all the guard rails and support D26 is getting as she navigates this loss and heads off to college. I hope you feel the love everyone has been sending in your family’s direction.
Can someone in the next circle outside your immediate family just tell these relatives not to come/designate someone to herd them? It’s not something your core group should be managing now. They are dumping inward and need to be escorted to an outer circle (of hell, IMO, but I digress).
I don’t know if you’ve heard of ring theory, but it is helpful in establishing boundaries as you grieve/deal with health issues/major life-changing situations. You cannot and should not be responsible for these people. Protect yourselves (and I say that as someone who has a really hard time drawing those lines.). Ring Theory Helps Us Bring Comfort In | Psychology Today .
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Keep hanging on and wow. Your deep and profound grief and loss, and others around you that are so much ‘noise’. Every day is keeping your head above water. Maybe there will be a time when you can float on your back w/o waves crashing around you. Glad you can share where you are and how you are getting through these daily challenges.
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@sbinaz I am so sorry for the loss of your child. I doubt any words from a stranger could comfort you, but I wanted you to know I am wishing for you peace and space to grieve during this difficult time.
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The brownout and lack of AC could be tough in nursing home. Hope things are getting better with that. And your mom.
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Thanks – the A/C was fixed yesterday, and Preferred had made the drive over (lives about an hour away) to take Mom out for a long drive in an A/C car. They observed that “the heat might be getting to her cognitively, she seemed hot to the touch” and can you hear me rolling my eyes?
We talked about a safety handle (not rails) on her bed, in hopes of making these falls/rolls more infrequent. I agree she doesn’t seem to be falling from standing so much as not getting in/out effectively. Sibs are ambivalent, I am a terrible daughter because I just cannot spend another bunch of money on something she will find a way around. I don’t know if my sibs are reimbursed for what they do (gas, McDonalds, mostly – she pays for her own shopping) but DH & I are up in the thousands for lodging, travel, everything she needs from amazon like personal care items, clothes…
Oh, I suggested they take her out to Marshall’s, they said “but that’s just clothes and no fun” and I let that go too. I am on a roll of letting them be them.
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Sometimes. that’s all you can do.
A good friend texted to let me know her dh’s mom had fallen and a CT scan revealed multiple hip fractures. They live OOS from mom. One son lives in her town but is not particularly helpful in terms of asking questions and problem solving, and his work takes him out of town a lot. Another son lives OOS and isn’t helpful at all. The two brothers are divorced so my friend is the only DIL. I told her that I am thankful that she lives far enough away that they won’t depend on her to do things, though, of course, she would be willing to pitch in. But she is still working FT so she can not be the person to spearhead all this. The brothers will be together today. Lots of magical thinking from the brothers that she can return home. Oh, and it turns out that she has a hereditary neurological condition she never told her sons about. That’s probably what is causing the issues and will not get better at this point. He was just there last month, and he said the decline in her mobility and speech is noticeable.
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