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Fil right now is in and out of consciousness. He can only indicate yes and no. He is being fed by ivs. He can’t use the entire right side of his body,
Mil reacted by making the sleep aide a true live in, She wants her husband home. This lady isnt even a cna. She has handled a Hoyer lift zero times. She is in poor health herself.
I don’t think she’s reflected on how it really takes a village to handle cases like fil, but she absolutely won’t consider a home and it sounds like she’s even resistant to rehab.
What to do?

Thanks for clarifying for me. So if MIL can afford all this care, do you need to worry about her monthly income?
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PeggySue2020 Apr 2, 2026
Like I’ve acknowledged, it is all mil’s money now, and as she doesn’t have dementia or a poa, it’s her choice as to how she spends it. That said, it would be reasonable to negotiate a lower fee agreement now that no actual adl care needs to be provided, plus there is less income coming in.

Mil’s first instinct in all 15 hospitalizations was to give aide the next night off, presumably to have her own space. We want to foster that versus a paid friend and her family.
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Sorry to you and your DH for your loss.
I hope you get the unfortunate complexities sorted.
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PeggySue, just a reminder that if your parents were married longer than 10 years and your Dad collected more in SSI than your Mom, then she can now file to collect his, if you didn't already know this.
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PeggySue2020 Apr 1, 2026
Thanks for this, I think she’s doing that. The pension will be reduced, thoigh
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I am a little confused. The person being paid that large amount of money was a family member, correct? Then a separate aide was brought in for night duty and this person brings a child? So two people were being paid to take care of in-laws?
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PeggySue2020 Apr 1, 2026
Yes, mil has two aides. The daytime one is my sil, who functions as an executive assistant, and the Indy, who has been there mostly to tend to fil’s nighttime incontinence and is now there mostly to sleep at the house so she isn’t alone. Aide started bringing the child three years ago, but not all the time. She has legal parents in a nearby city where she attends school.

Sil is paid hourly. Aide is paid based on a contract of 117 hours a week, as it was back in 2020 when she was brought in to care not only for fil after his stroke but mil who was fighting cancer at the time. She has long been in remission.
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Mil has the aide coming at 9 now. The main reason now is that she’s afraid to sleep alone in the house, plus of course the loneliness. There is also less money coming into the household now that fil has passed. Theres no need for her to be paid 123k/year anymore to basically let the dog out and bring/not bring the kid to sleep over there. 9 is pretty late to start doing crafts. As well. it’s not like either of her sons are willing to put in their own labor making a princess suite for this child, which frankly they should not be sleeping in rehabbed or not. Hopefully like other opportunistic aide situations, this one works itself out.
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Hothouseflower Apr 1, 2026
I really hope so as well, PeggySue. It must be hard to stand by and watch a loved one being taken advantage of and not being able to do anything about it.
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Sorry for your loss.
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I’m glad for everyone’s sake he managed to get home, see family, and not have a long drawn out decline. I hope everything else works itself out.
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PeggySue2020 Mar 25, 2026
Thanks, Shirley. It very well might.

The things mil needs support with aren’t her adls. It’s more like executive assistant functions that her other dil is tasked with. The immediate task burden is now the financial paperwork that comes with spousal death.
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PeggySue, thinking of you and your DH. 🙏💐
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Peggy Sue,

I'm so sorry for your loss.

I'm sorry you and your family inherited the drama of the opportunistic aide.
We also had an opportunistic aide who Dad was very bonded with. After Dad passed it took awhile but the opportunistic aide washed herself out and was replaced with a legit, competent CNA.

I with you strength during these trying times.
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PeggySue2020 Mar 25, 2026
I’m not sure mil needs a cna, even. She has all her adls. She doesn’t need to have her oxygen adjusted or to be diapered, and the fact that she told aide to not even be there before 9 pm is a welcome sign. The whole focus now is financial documents and paperwork that mil has the other dil to help with.
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Dh called mil to ask about dad’s cremation arrangements, then “tested the waters” regarding the aide.

The 24/7 scheme is already canceled. Aide is not even supposed to be there until 9 tonight. When dh asked how long that would be going on, mil said for just a little while. Those hours are too late to cook a communal meal to feed the child with or for the child to be coming over. Which the child hasn’t been —thank god—during the gatherings of extended family.

Dh’s brother reinforced this understanding last night when he and dh went over there at 3 am. Aide had been the one keeping vigil. He turned to aide and said, “Welp, thank you for your services.”

It would be decent to pay aide severance. All for that. But when it comes down to it, this aide was mostly there for fil.
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Im very glad his brothers were able to see him before he passed. His younger brother came the day before we had the hospice meeting. The older one and his daughter arrived the day fil came home. That first day, fil had an end of life rally where he had actually eaten, was speaking, and even hugged brother. By day 2, that was all gone. And about 4-5 hours after they left, so was he.
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SamTheManager Mar 24, 2026
I'm so sorry for your loss. And I wish you strength to deal with the family and "family" situation you're facing now. I think the best advice I can give you is to try and separate yourself and your feelings from the aide. It looks to me like this person is a permanent addition but it's not one that you can do much about. She can be company for MIL and maybe that saves you some trouble, that's how I would think of it. There is no way anyone can blame you if there is some kind of underage working issue going on, that's for sure.

200K a year, eh? That should be worth a lot of companionship.
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PeggySue, So sorry for your loss. I'm glad he was able to die at home rather than in the hospital.
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PeggySue, my sincere condolences for this loss and all the stress that preceded it. From his stroke to his passing it was mercifully short. I wish you great wisdom and peace in your heart as you and your family move through the grief and change.
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Peggy Sue,

I am so sorry for the loss of your FIL. I’m glad he made it back home since that is where he wanted to be.

No matter how ill they are it is always a shock when they finally pass 💐
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We went over again with dh’s uncle and cousin.
He died about five hours after we left. 230 am on tuesday
Dh had planned to spend a few moments privately with dad today, so he’s gone back there by himself.
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AMZebbC Mar 24, 2026
My sincere Condolences to you and your family.
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We went over tonight as fil’s brother and his daughter were in town to pay the last visit.

Dh’s brother was in the driveway having a cigarette. Dad had two full puréed meals after being sent home with doctors saying he had no swallow reflex. Dad can still indicate words. At this point, it looks like we were sold a way worse outcome than presently exists. It definitely looks like he could benefit from rehab.

Aide made a deal of repositioning fil while requesting mil’s assistance. Aide then removed her sandals and put her dirty bare feet on the couch. When the company came, aide finally let us alone.
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Ok, I read the rest of the comments and it seems like your FIL won't be going back home, which is a good thing for everyone involved. It's sad, too.

Will your MIL need to have this aide after FIL passes? Does she need help as well? If so, maybe the aide she knows the longest is the best one to stay there. I don't know how old the child is, and I do think if there is an ambiguous status, that is the aide's problem, not your family's. I think any legal problems would be on the aide, not your family. Everyone should deny all knowledge of the child's origins, and say they figured this child belonged with this woman if anything legal happens as a result. No one is paying the child, right?

These relationships get so tangled, and people who live in the house to take care of people are really walking a fine line with the relationship.
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PeggySue2020 Mar 22, 2026
Mil has all her adls and I adls. She still drives. Aide’s routine has been mostly tending to fil, particularly his nighttime incontinence. Aide’s value-add after fil dies would be as a paid friend bringing a fake granddaughter that mil now watches when aide has other jobs to attend to! Mil has actually been PAYING to babysit the kid. She’s now 10 and still sleeping in the same bed with aide because fil wouldn’t let her have her own upstairs suite. What budding tween wouldn’t love having a whole floor to themselves? I have strongly recommended to dh that he strongly decline any request from his mother to facilitate this, as should his brother.
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The aide drama is not going to go away and your MIL will blame you if she loses this “family” she pays to be her family. Except for the obvious WTF of it all, what’s the harm? FIL is dying. MIL will be on her own and if you don’t want her to become your full time responsibility, perhaps this aide is the answer to keeping her from being alone and keeping you from having to stay involved all the time. My friend’s Mom pays $250k a year for her live in aide. (My friend writes the checks for his Mom to pay her bills and this aide from her account). Seems to be the rate associated with somebody giving up their own life for however many years. MIL can waste as much money as she has - be glad she’s got the money to waste so your husband doesn’t feel it’s his obligation to chip in. I’d be surprised if FIL ever goes home. I missed how old he is but it’s likely they’d move him to a rehab v home, isn’t it?
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PeggySue2020 Mar 21, 2026
Just Because mil has this grandma fantasy doesn’t mean that we all need to be part of it. The next step is invingling dh to come rehab the upstairs addition where he and his brother grew up for this child. it’s a perfect place for bringing dates, which she’ll likely be interested in very soon. Very private. It is one thing to allow one’s own children to mess around at one’s own dwelling, and a whole another thing to allow a child of ambiguous custodial status to do so.
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It’s tough, this last little roller coaster of doing better, then worse, then rinse and repeat. I would try to put this resentment about the aide and her family to the side for now. Don’t put your energy there, worry about it when FIL is gone and you see where things shake out. Lonely people with money will pay to ease the loneliness. Even if it is fake, they don’t care. A romance scam would be worse in my opinion, and probably far more damaging and hard to such down.
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PeggySue2020 Mar 21, 2026
thanks so much, Shirley.

From the time fil is transported home until the time he dies, we all realize aide will have a huge role. She has been the one he’s been comfortable with changing his diaper since his first stroke. We all get it.

i kinda see this as more pernicious than the romance scam, tho. As my own hospice counselor (from dads death) put it, her coming in bearing gifts like lobster from her “church” in the first year and giving us Hawaiian Host chocolates was a calculated and very typical move based on his own personal exp. Btw, they aren’t Hawaiian islander, but use that sympathy. Once they show they’ll take care of elder, elder is expected to take care of them. Thats whst my own hospice counselor said.

I can see putting up with this in the short term, but I don’t want to be part of this for the long term. Tweens sent out to curry favor and profit from clients—even if they don’t fully understand this—are not people I need to deepen relationships with,
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He hasn’t left the hospital yet. I guess he ate more applesauce.

It’s not exactly a rally and this is not exactly hope but I don’t see how we can deny him that or ice chips or whatever once he comes home. I get it with hospice, my dad was on it, but we fed and watered him until the end. My sister runs a cancer department. We consulted with her. Whereas the present hospice seems to be pushing the no fluids thing.
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Ok, I still need help as to the next stage of the equation that involves this child related to aide through whatever niece/cousin/auntie relationship. Mil has no grandchildren as both spouses her sons married were infertile, and this is not the first time she’s done grandma fantasy. That kid is now 40. That and we don’t feel the need to adopt into this secondary fantasy. The aide is already acting like she and the child part of the family. She isn’t, to me and dh.

Always looking forward, so the next holiday is Easter. If there’s any celebration, I see myself stuck on the couch conversing with mil and aide’s informal foster adopt child seeking attention from the one of eight informal grandma role models existing.

To some, I seem extremely harsh. Whatever. Aide has a husband with an actual horse farm in her country. Aide is here to maximize resources toward that for her own family including the kid I might be tasked to socialize with. I’m not being paid, aide is. The day aides paycheck stop, so do the visits from the child.

Which makes both non family.

Im sorry aide introduced a child. But she’s not my child and we don’t even know what relation there is to aide. Tweens can say all kinds of things to outside people, true or false. We don’t need that risk. As long as she is inserted, I need a gray rock strategy.
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SnoopyLove Mar 21, 2026
Wow, so unbelievably annoying to have to be dealing with this absurd pretend grandchild situation in the midst of a family member’s life coming to an end.

For the gray rock, all I can think of is simply being cordial. I would find it very hard, myself! 😬
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Back from the latest meeting.

Aide stated she had observed fil eating a full breakfast. We had all been told he couldn’t swallow, but here he’s doing that just as the hospital has gotten the consent to just hand him off to hospice.
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PeggySue2020 Mar 19, 2026
Fil remains on fluids for tonight. Tomorrow, Friday, he will be discharged without them. His other brother and his daughter are scheduled to come in Sunday.
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It would be better if he’d just pass in the hospital instead of with hospice facilitated dehydration, which doesn’t sound like a peaceful death at all. https://kevinmd.com/2015/10/terminal-dehydration-a-gentle-way-to-die.html

Of course, aide is primed to make bank on this occasion. She has inserted herself as “family”, as MIL even told our pre-hospice meeting she saw her as family. You too can shnooker an old person for what is presently a 200k salary plus free rent and food for you and whatever relation this child is to you. His passing with the child’s “cute” presence sets it all up for MIL to request her son's rehab the upstairs suite for this wonderful tween who held his hand or catheter bag when dying, which could definitely be construed as child labor.

Aide being present for hospice and funeral period is one thing. Us having to adopt aide into the family thereafter is another.
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JoAnn29 Mar 20, 2026
Hospice does not starve people. Not being able to swallow is the first sign the body is shutting down. You can feed someone once they start transitioning. It does no good, the body no longer digests food. It does more harm than good.
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Fil is going to hospice in another couple of days. Aide insists she can handle 24/7 and if she can’t there are 45 people she lives with who can come help. She literally said 45, in 11 bedrooms. There is also the 10 yo informal adoption child she brings over. What a mess, and not over when fil dies. Mil really doesn’t need this aide physically, but feels like she’s a grandma to this child.

Hate to tell ya grams, there’s a million more grammas for this kid at its home. It’s real home.
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Fawnby Mar 17, 2026
Yikes.
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Peggy Sue, my friend's husband passed recently. He was in hospice care. When it was time for the morphine, the hospice nurse placed it in his mouth between his molars and cheek. My friend said it was a liquid and I think she said administered with a syringe. I don't think a needle was used, but I wasn't there.

He was comfortable throughout.
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Suzy23 Mar 17, 2026
Same with my dad when he was in hospice.
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Just looked up...
"Generally, CNAs cannot start, maintain, or administer medication through IVs, nor can they manage, start, or flush feeding tubes (stomach feeding), as these are restricted nursing tasks. While they can assist with oral feeding and monitor for complications, inserting tubes or giving medication via tubes is outside their scope."

CNAs are not medically trained. So here may be a good reason to place FIL in LTC. Him not swallowing is a big thing. I think my RN daughter would say, no stomach tube. Once they place it, only Hospice can remove it. He maybe transitioning. Hospice may be the only choice.

Fawnby said "She has no idea what she's asking for by insisting he come home." I had to laugh at that. Ever since Peggy has posted, her MIL has paid thousands of dollars to have her and her husband cared for. These people she hired, I think, are not even trained. So, MIL doesn't care because she will expect others to do the care. She won't be doing it.
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PeggySue2020 Mar 17, 2026
The Aide isn’t even a cna. The hardest thing she has ever had to do was change FIL on his bed. Fil could actually move then and she still requested dh to assist. For the most part for the past four years she’s cooked their dinner, fed their animals, and assisted fil to the toilet when he crapped his depends. The subject of bulb aspiration draining came up, I said I assumed the aide could do it and she gave me this look from hell. As if. And by the way, we are the family even older than you, aide, but you wouldn’t even raise your voluminous behind to offer us a seat.
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Another issue with any nasogastric placement is that fil has been on supplemental oxygen for three years now. So is the aide supposed to take him off the oxygen to hook up his feeding tube and slide meds into it fast enough so that he doesn’t miss the oxygen?
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PeggySue, I will be shocked if they release him home in his current state, even with hospice I can’t see managing him at home. Hospice only covers minimal visits.

I can imagine MIL must be feeling extremely sad and frightened and hoping to “make things right” and “do her best” but I’m afraid those things will not save him.

Where is your husband in all this? You are amassing as many questions as possible for the “big meeting” but I suspect the real issue is more emotional than practical. Not “how exactly is MIL going to face the 9,254 complex care issues she will be facing” and “how can I convince her that she is not up to it” but more how are they all coming to terms with his likely imminent death. You all have my sympathies.
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Geaton777 Mar 17, 2026
If the wife insists enough they may release him AMA (against medical advice). Once this happens, she risks losing medical coverage for his current and future health issues, and they may not re-admit him no matter what. He'd have to go to a different hospital, and even they may see the AMA in his records and deny treatment or admission.
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Help me think of salient questions for the Big Meeting.

Ill start. If he’s going home with a tube on pallative care do we just bring him back to the er if and probably when he aspirates? Then what?

If he goes on hospice, it is a matter of arranging with a new provider whether he will continue on the new antiepileptics he is on. Morphine, Ativan and Seroquel aren’t going to fix his seizure problem.
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Fawnby Mar 16, 2026
I doubt if a hospice doctor would discontinue any maintenance meds that keep him comfortable. Hospice is very much about keeping them comfortable, and having seizures isn't. They might have to administer the meds by a different route. Ask.

Home for comfort care is more complicated than it sounds. Ask if he could go to LTC rather than home. (Don't let MIL edit your list of questions! This is certainly a legitimate one.) If comfort care lasts only two weeks, then that's one thing, but if it goes on for six months, that's another. In the case of the latter, he'd already be in a nursing home, and MIL would not have to turn her home into one. Which is extremely awful to have to do because her home won't be a home anymore, it'll be a nursing facility, and if she's not in good health herself, the effect on her could be serious. She has no idea what she's asking for by insisting he come home.

Please let us know how it goes!
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What is the sleep aide? I don't know what that means.
I am not a cna, and had no prior medical care experience before my husband was in the same condition as your FIL. After several weeks (unsuccessful) in Rehab, then another 9 month in a skilled nursing facility, I was forced to bring my husband home and begin caring for him. I had spent nearly every day with him at the hospital, rehab, and nursing home. I watched, learned, and was even taught by the nurse how to provide the basic daily cares my husband needed. By the time he came home I was fairly proficient in diaper changes, bed-making, transfers, and using a hoyer lift properly.
I guess the point I'm trying to make is the caregiver does not necessarily need to be a cna, but she DOES need training - even informal - to learn how to properly manage this man's care needs.
I can kind of understand his wife's desire to have him back at home. We all just want our life to return to normal.

I'm not going to judge whether she should have him cared for at home, or in a skilled nursing facility. But, I hope you can convince her to have a better trained and more experienced aide to help with the home cares. Both the wife and aide should get some training. He should definitely take advantage of spending weeks in rehab, and try and get him off the IV feeding. They will not be able to do IV feeding at home! She can ask the doctor about a G-tube for feeding, and learn how to use it. (I had to do that as well for my husband for the first 2 years) She and the aide can alternate spending days in his room, if allowed, while at rehab, watching and learning how to manage his care needs. They may even be able to get some informal instruction from cna's and nurses there. That was how I learned.
This has been my only job now for 10 years. I was previously an office assistant.
I love having my husband at home with me, even with all the challenges. I currently am employed by a home health care agency, with my husband as my only client. I have to maintain CPR/First Aid certification, as well as completing several continuing education units every year.
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PeggySue2020 Mar 16, 2026
I just got home from a meeting in the icu. There will be a formal “options” meeting where we hear from the neurologist tomorrow on whether there is anything that will work or whether we just take him home for comfort care.
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