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I was at the nursing home during lunch yesterday. The day nurse said she was not having a good day. She had been agitated and trying to go for the door, etc. I went in to find her sitting behind the desk with the nurse, eating goldfish. The nurse quickly “invited me “to eat lunch there, even skipped making me pay for it lol. I think she was happy for my help. Mother was very medicated and ended up falling asleep during her lunch. The facility NP came by and we talked about changing the scheduled meds to PRN. But trust me they’ll be needed all the time anyway is what I thought. I left after lunch, having put mother to bed, which is unusual for her. But she wanted to get in her bed.
facility called me at about 9 PM. She was having a very bad episode. The staff could not control her. She had gotten out of bed and ripped her mattress off the bedframe. Had climbed in the bed with another resident. It was unfortunately a float nurse there. I did not know what else to do. We tried speaking to her on the phone and she had some paranoid thoughts such as the nurse didn’t want her to talk to me. I told her that was silly. The nurse had called me to talk to her. But she just had that mean out of control voice. Really something I’ve heard so many times over the years. My husband was due to be at work at 5 o’clock this morning. But he went ahead of me to the facility while I got myself together here at the house and let my mother’s dog out for a potty break. arrives there to find her in her wheelchair in the hall, still frequently trying to get up. He was talking to her gently she likes him. I have no gas in the tank. I just looked at her. I made some quick text and phone calls and have arranged a private aid to sit with her from seven in the morning to midday today. Then she’s going to come back at 6 PM tonight and sit all night. I had already scheduled the social worker meeting for this afternoon. I strongly suspect they’re gonna tell us we have to ship her out. Psychiatric unit or something. The Caregiver set up is not ideal. It’s not someone with an agency, therefore the documentation will not be Medicaid compliant. So this will probably come out of my pocket for tonight. Just waiting to see what happens at the meeting today. I’d also already set up an attorney meeting for Thursday. I’m about ready to start telling people if there is not a solid path to keeping her in a facility forever with it paid for by Medicaid. I’m out. It’s time to get a court appointed Caregiver or guardian or something. Surely if this is not a path to having her documented incompetent, I don’t know what is.as a sidenote, during these episode, she won’t wear her oxygen and stuff. When they got her back to bed, they were going to just put her to bed without it. I asked the nurse to check her and her saturation was 85%. So her nighttime meds kicked in and she fell asleep. I sat there at her bedside for a couple more hours and wondered how one 77year-old person whose lungs are on their last “legs “can cause so much chaos in my life.

This will go on until your mother is properly diagnosed and is medicated or until one of you dies first.
As long as you continue to show up, this will go on.
And to be honest, I would have long ago stepped away from all of this and told any callers that I am not involved with my mother.
She should long ago been handled by competent trained caregivers under guardianship of the state.
I would move four states away to escape all of this, myself.
I sure hope I recommended to you long ago, O, the book Never Simple by Liz Scheier--if not you need to order that ASAP. That poor woman spent decades of her life attempting, along with the social workers of the City and State of New York, to intervene for her mentally challenged mom. It NEVER WORKED. The woman died old, alone and in squalor. Her daughter stood witness, her life captive to this for decades.
Up to you entirely, but I would have long ago stepped away. Not everything can be fixed, but it CAN be prevented from swallowing up your own life, which is what it is doing now.
Draw yourself a big fish swallowing a little one. Get the picture?
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Oedgar23 Jul 8, 2025
I did actually read that book. A lot of it rang very familiar to me. I think that woman was a bit worse than my mother was that is up until present times.
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I’m sorry for all of it. You’re exhausted and burned out, no one can blame you for it. Mom has to feel scared to be so out of control. The current medication regime isn’t working well enough to calm her. For what it’s worth, I’ve seen my son’s O2 sats as low as in the 60’s multiple times and he bounced back. Don’t get hung up on the numbers, they often matter less than we think. Also, don’t try to reason with her when she’s out of control, she can’t process the logic then. If mom is moved for a psych evaluation it may be a gift to her. Know you’re still acting in her best interests, rest as you can, and give your kind hubby a big hug. Wishing you rest and peace
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Reply to Daughterof1930
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Medicaid is never going to pay for a private sitter to stay with a nursing home resident. Please don't blame yourself for having to make a split-second, emergency decision to bring in a private-pay aide.

You say your mother is in a nursing home. Does she not have hospice care? They will keep her sufficiently medicated. Nursing homes aren't allowed to use physical restraints anymore. Psychiatric facilities are though. You would be doing both your mother and yourself a favor by having her go for a psych evaluation in the hospital. Tell the nursing home that when she is getting out of control they are to call 911 and have her taken to the hospital.

This is not for you to have to handle. The facility she's in is collecting big money for her. It's their job to deal with her explosive and violent behaviors. They accepted her at the nursing home she's in. If they are unable or not equipped to deal with her, they need to do their jobs and find somewhere else for her to go, or send her to the hospital.

I'm so sorry for what you're going through. I think you're giving yourself the best advice when you say about a court-appointed guardian. This will probably be the best way foward with your mother's care.
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Oedgar23 Jul 8, 2025
When I say Medicaid, I mean, we have to spend down mother‘s money in a way that is compliant with Medicaid so we can then get them to pay for her future permanent long-term care stay. If I just write a check to some random Caregiver, that actually is not compliant. There has to be a Caregiver agreement already in place proper receipt, etc. This is literally some word-of-mouth person I found late last night.
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Just wanted to offer you support during difficult times.
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Do not pay for things like sitters for your mother with your money. If she needs a higher level of care you need to let the process play out. Stop intervening with temporary fixes. Stop running over to her at 5 o'clock in the morning. Tell the nursing home to call an ambulance and take her to the hospital if she has another "big episode".

You have your own husband and family including an autistic son to worry about.

Even if you don't have DPOA, you are her next of kin. If/when she lands in the hospital and you get a call, ask the doctors if she's competent to make her own decisions and sign consent forms. If they say that she is competent then there's nothing for you to do but to stay away. If they say that she isn't competent, see what the doctors recommend in terms of treatment but also make her DNR/DNI. A DNR/DNI merely states that if her heart stops beating or she stops breathing that she will not be resuscitated or intubated.

There may come a point during hospitalization that palliative care should come on board her case. Palliative care consults often happen when the patient is practically at death's door and have suffered through futile care. It's better to get them on board sooner rather than later so that she can be transitioned quickly to comfort care, if necessary.

All too often old, sick, demented people are kept alive using medications, pacemakers, or even surgeries when they should have been allowed to die ages ago with whatever dignity they had left.

Ultimately, you need to decide what you are willing to do for your mother who, from everything you've written about her, is mentally ill and has a poor quality of life. But until she's deemed incompetent by a doctor or judge, there's nothing more you can do that's going to make her get better.
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Oedgar23 Jul 9, 2025
They are evaluating her very bad kidney function. And just received another very abnormal lab result of a way too high BP pro BNP. I have a feeling a hospice situation is coming. She stated her wishes to me clearly last fall. I actually wrote it down Word for Word. So if they asked me if they should do dialysis. I’m going to tell them no
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Oedgar, rooting for you as always! 💐
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Reply to SnoopyLove
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Actually , NEW THOUGHT .

Your Mom’s increase in behaviors may be due to hypercapnia . Too much CO2 in her blood . Even if her O2sats aren’t that bad , it doesn’t matter , with her COPD she may not be expelling the CO2 , it gets blocked from leaving the lungs . Didn’t you say she was on a BiPap machine in another post ??

I’d have her sent to the ER to determine if this is respiratory acidosis/hypercapnia . If it isn’t then I’d have her then sent to geriatric psych ward .

If it is hypercapnia , you are looking at end stage COPD causing her confusion , restlessness , paranoia on top of a mental health or dementia issue.
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Morris64 Jul 8, 2025
Retired RN here, My thoughts as well. You must be in health-care.
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I’m with Alva , if I recall I told you to step away in your very first post months ago .

This is beyond what you can handle now and you should not spend your own money .

Have them call the psych NP that you mentioned and get Mom transferred to geriatric psych .
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Reply to waytomisery
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Sounds like you're going through a lot but I wouldn't give up on her just yet. Have you verbalized your concerns to her physician. Her agitation could be caused by a less than optimal oxygen level or the onset of cognitive issues. Some undesirable and disruptive behaviors in the elderly are treated with medication. Maybe, she's not in the right facility for the level of care she needs. Speaking with an Elder Care lawyer is probably a great idea especially if she has a lot of assets but Medicaid guidelines are strict as you seen to already know and and if you try to get goverment assistance for her they'll be looking at everything...every little penney. Are you the only child? If not how come the siblings are not supporting you in this situation? BTY, your husband seems like a sweetheart.
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Oedgar23 Jul 9, 2025
Her oxygen levels are good when she’s compliant and wears her oxygen. When she gets agitated and rips them off, they go down to 80. Her CO2 has been not too terribly high around 30. My brother lives 350 miles away, but he has been estranged from her for 20 years and felt like he was under no obligation to participate. I had been arranged for 10 years before she showed up at my door. My brother and I used to have a very good relationship, but this has definitely strained it. The other night when the nursing home called us to come intervene in her crisis, I called my brother yelling very angrily. And we hung up on each other. Before the strain of caring for my elder parents, this sort of thing never happened. My brother was in a lot of ways disappointing when my father was dying as well.
we just got a new lab result in that I think is very meaningful. Her pro BNP is 1120, which is about nearly quadruple what it should be. This has to do with heart failure and fluid balance and kidney function. I’m sure Alvadeer could explain it better. But I think big bad things are brewing.
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I’m sending you strength. What an ordeal. I agree with the others that you need to stop showing up to rescue the folks in the facility and let them solve it. The chips will then fall where they may. And I’m glad you are ready to tap out completely if necessary. If she doesn’t transition to a geri psych facility or hospice that might be your only option.
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