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I've been a part-time caregiver for my elderly mother for several years, northeast US. She is 84 and has a history of mental illness/psychotic depression, last hospitalized 7 years ago.



Her care needs have been increasing for some time, 2.5 years of Covid-anxiety, cancer radiation therapy earlier this year, and a knee surgery that needed to happen but she never went forward with left her largely apartment-bound. But she was functional enough to make her own meals, use the computer, do her own taxes...About a month ago her mental condition started seriously declining, not eating or sleeping, not communicating with myself or her visiting nurse. She was hospitalized briefly and treated for low blood sodium and released when she seemed to bounce back a bit. But discharged failed and she was taken by ambulance to the hospital again about 72 hours later with the same symptoms.



She's been stuck there for the better part of three weeks now. The staff psychiatrist said that while she seemed somewhat delusional, now that she's eating and sleeping again she's been engaging with them well enough and answering their questions competently enough that they didn't have the legal grounds to involuntarily commit her to a psych unit. They re-started her on her old antidepressant that she quit taking a few years back.



But she's still anxious, angry, combative, delusional, and way off her baseline compared to how she was just last month, when I visit her now. She's somewhat better than when she went in, but definitely isn't acting like the person I remember. I don't think she's safe to be discharged home in this condition and they agree, and I don't believe I have the ability to care for her even part-time any longer and they agreed with that also.



So two weeks went by while they searched for a rehab facility, and I got the word that nowhere will take her ("we put in requests to 200 facilities") They say she is "un-rehabilitatable ." Her doctor and case manager seem to be trying to bounce the situation back to me asking me what to do at this point, is there a private pay option for nursing care, etc.



But I have no control over her finances, power of attorney, guardianship, or any of that - not that she could afford private pay, anyway. I'm just her health care proxy and I figure they really should be taking it up with her since she's been declared "competent", but my impression is she can't or won't listen to any of this. All I can get out of her when I try to speak with her myself about what should happen going forward is delusional ranting combined with "I'm not doing anything, I'm not signing anything, they've destroyed me and ruined me, I'm not going to any damn rehab" etc..



Totally lost as to what I should be doing at this point, or if there's anything more I can do. I still think she's suffering from a recurrence of psychotic depression, and that she needs ECT like the last time she was hospitalized. But that doesn't seem to be in the cards for her this time.

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I would tell them you are not an option, no is a full sentence and she needs to be stabilized and go to rehab.

Unsafe discharge at the rehab facility and you CAN NOT help her, no explanation needed.

Do not believe anything they tell you to get you to take her home. If she is competent, they would release her and she could go home by herself.

They will say and do awful things to make her your problem, be prepared for this and tell them no, you can not help her, period. Every single time.

If you stay strong, they will get it figured out. Maybe tell them you can't take all these calls because they have said she is competent and that means your POA isn't active, direct them to deal with her.

Great big warm hugs full of strength for you!
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MattyZ Nov 29, 2022
Thank you and I agree. Her sister and I have a meeting with the case manager on Thursday and we'll try to get on the same page about that. If the patient is competent then please ask her what she wants to happen at this point. We would hope to receive updates about her medical condition but we can't field questions about her wishes or her ability to pay for nursing care, etc. we are simply concerned family members.
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MattyZ, you've received excellent responses below. While I think it's nice that the hospital agreed with you that you don't have the ability to care for her part time any longer, it struck me that their agreement didn't matter about that -- if someone says they can't care for someone, they can't.

I think they are going to subtly start increasing the pressure on you to take care of the situation, as they have already started to do by asking you what to do, is there a private pay option, etc.

Too many families will cave into this pressure and end up taking the person home. Do not do that. Oh, and btw, if they try to tell you if you take her, it will only be temporary while they continue to look into options, don't believe it. She will be off their caseload and it will all be on you.

Also, do not use YOUR money to pay for anything, any placement, any deposit, nothing. If your mother is mentally competent, it is all HER decision and should ALWAYS be HER money.

Please keep us updated!
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MattyZ Nov 30, 2022
Her doctor and case manager seem very prickly about any implication on my part that "we're trying to just dump an ill elderly person to an unsafe situation" which unfortunately seems to only make me more convinced that that's really what they want, those were their words in fact, not mine, I believe I just said "So if she's competent she can just go home if she wants?"

It seems unlikely they actually put in requests to anything like hundreds of facilities unless there's some automated method for applications to be submitted and for rehab facilities to automatically accept or deny them. On Friday morning a social worker there called me up excited that she was "pretty sure" they had a bed at one of the more well-regarded places in the area. Then that afternoon she called me to tell me it fell through (why call me at all until you're sure? unprofessional) Then on Tuesday they tell me there's nothing anywhere? sounds like nonsense.
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I am so sorry that you are going through this with your mom. I agree with isthisreallyreal. Do not be pressured into taking her home.

When no one brings your mom home they will find a place for her. Allow them to do it.

A few years ago I was friends with a man who went into the hospital after he totaled his car. He didn’t even remember having his accident. He had a stroke when driving. It was very sad.

He was single, in his 70’s, had colon cancer, no children, deceased siblings and only one nephew who lived many states away. His nephew was notified but he didn’t want to be involved in his uncle’s care. They weren’t ever very close due to living so far from each other.

His cancer was too far along for him to be successfully treated.

This gentleman was told by the hospital staff that he shouldn’t be living alone and they asked for names of people that could possibly take care of him.

None of his friends were able or willing to take care of him. His financial situation didn’t allow for private pay.

The staff will try to get family or friends to step in and be responsible for their care but when they are told absolutely not, they will search and find a place.

My friend ended up in a skilled nursing home and remained there until he died. He accepted the fact that no one could accept the responsibility of caring for him full time.
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Reply to NeedHelpWithMom
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My sympathies to you. Competent vs not competent. Sadly this is not often clear or easily measurable.

'Trapped in limbo' is a good way to put it. There doesn't seem to be anything you can do now (you've been very thorough) except maybe a little re-phasing. From trapped to awaiting.. 'awaiting more stability'. Then wait.

Time will tell if independence reaches the level a safe discharge could be tried again. Or if not, steps in the direction of supervised living.

Hold firm against the pressure of hospital staff. Continue to be Mom's advocate.
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Matty, what organic stuff have they ruled out?

Have they done a CULTURE for a UTI?

Definitively ruled out a stroke and brain tumor?

Are her electrolytes stable?
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MattyZ Nov 29, 2022
Thank you for replying, Barb. I will say the hospital seems to have been very thorough testing for physiological causes. Aside from low blood sodium initially (which I think was because she just wasn't eating very much at home for some time) they're not finding anything. Only other abnormality they found was some kind of elevated enzymes that suggested she may have had a mild heart attack at some point, but I guess they can't say for sure when that might have been.

CT of head and chest are good. Her (stage 1) breast cancer was successfully treated at Dana Farber earlier this year by surgery and radiation, and aside from some peripheral neuropathy and the arthritis in the knee she's been in pretty good physical health for 84 I think. No diabetes and cholesterol is consistently excellent. But she has suffered from mental health issues all her life, unfortunately
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Agree with others here. Please do not cave into any pressure from the hospital to take her home.
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MattyZ Nov 30, 2022
Talked to one of the case managers earlier today and they did exactly what folks have said they would, put the pressure on to get her home and arrange more services or start researching private-pay nursing homes, asking me what her discharge plan is.. I was like "yeah what is the discharge/treatment plan for this clearly seriously ill patient maybe you guys should come up with something?"

Not a pleasant conversation but I held firm on all that. If she's competent then these discussions must involve HER.
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Folks I wanted to thank you for all your advice and support. Mom is leaving us unfortunately, it's moving quickly now, days maybe. She has a quiet room in the hospital we've decorated and myself and the family she has around here are visiting her as much as we can.

She has had some periods the past few days where she's been fairly lucid, and she doesn't want more intervention. When she's awake she's been smiling at me and holding my hand and saying "So beautiful" sometimes while I'm there, and she doesn't seem to be in any pain. Relaxed, and dignified. Sometimes she'll eat a little bit of a strawberry or drink some OJ, but that's all.

Well she said she didn't want any damn rehab, and she never liked the idea of a nursing home.

My aunt and I tried very hard to advocate for her, but we're just two people and we ran out of time, when a very elderly person starts absolutely refusing to eat or drink significantly there's only so much to do I guess, and all the attempts to get her somewhere that would agree to treat her with ECT or something just didn't pan out, I called and called and pleaded with various hospitals and doctors myself, but finally couldn't make any headway. And we had some wonderful times with her the past few years despite her struggles with chronic pain, cancer treatment, and that she was housebound a lot of the time, due to anxiety about Covid. No one particular issue, but so many. But she seems sick of it and just wants to rest. I get the sense that it's at some level been her wish for a while and I should respect that, at this point.

We're going to miss her terribly. It was a big challenge being her caregiver these past several years, but my task will be complete. I feel honored to be there for her at this time.
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BarbBrooklyn Dec 16, 2022
Just (((hugs))), dear one.
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MattyZ,
I second Barb Brooklyn's question... Do you know if they have specifically done a urinalysis to test for UTI?

If no, please ask if they could. It REALLY changes the personalities of seniors. You said they've been looking for all types of psych conditions and maybe she hasn't complained of pain urinating, so they wouldn't have tested. I can tell you my mom had 12 UTI's between 2020-2021 and not once did she ever have pain urinating, nor did she present with any of what would normally be UTI symptoms.

It was always a change in her behavior and way she spoke, which I began to recognize in a flash when she had one. Dr's would ask if she had pain with urinating & she'd say no, and she didn't have a fever-but seniors often don't run fevers like a younger person w infection will... The Dr.s began testing test based on my word that she was very much "acting" & "speaking" different than normal, [often she was just generally difficult in these times, but a couple times suddenly she seemed all out crazy)... Every single time it turned out it was a UTI.

I can tell you'd really like to have your mom back to how she was a month ago. After everything my mom went through during a 2 yr ordeal where a lot of medical oversight took place, I could probably suggest 12 different things to ask about, but I'll just add 3 more here.

Have they tested her magnesium level? That's a special test which isn't measured in a Comprehensive Metabolic Panel [CMP}.

Do they know what caused her blood sodium to drop so low 2x in a row? There's obviously something more going on with her which has caused the changes you've explained & what caused the sodium to drop so low two diferent times in a row would be important to know.

One last thing, you said she wasn't eating much at home for quite some time. When she started eating again in the hospital, something quite rare called "re-feeding syndrome" can occur which throws electrolytes out of whack. It's a little more involved than I can write about here though.

I mention these things because if they've mainly been looking for psych issues, trying psych meds, etc, I saw first-hand how often rotating hospitalist Dr's can sometimes get off on one-trail, and then stop looking for what the real culprit may be. Undoubtedly your mom's attending Dr's have rotated a few times in the weeks she's been there, so it's possible something's been overlooked in the shuffle.

I wish I could say that would never happen, but my mom's saga--where what was actually wrong was never what they thought or said at first--is an example that it can & does sometimes happen.
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MattyZ Nov 30, 2022
Thanks for your reply, Bandy. She has so much brusing on her arms from blood work that it seems to be making her mental state worse, I find her staring at her arms when I visit and she tells me "Look what they're doing to me!" and she's started sometimes refusing to have any more.

Not sure exactly what caused the blood sodium to drop but she was on a saline IV for some time and now that she's at least eating something it seems to be stable.

I would like to see her more like she was before, but I think lying around the hospital isn't doing her any favors, and the longer she's in that situation the longer it'll take to bounce back if she can. But I don't think pulling her home will do her any favors either, I think she needs to be in a community setting with more structure at this point. Just don't have any easy way to make that happen quickly, unfortunately..
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Her case manager is pushing hard on hospice, now. I was initially agreeable until I read more about what hospice actually provides, which doesn't seem to be much other than make me a 24/7 caregiver for who knows how long, trying to single-handedly do all the work a whole team of hospital staff is doing now. She gets a nice bed and someone gets paid to come in for 20 minutes a day and fill out a Medicare checklist, and I can call them anytime if I have any questions about what, how to provide palliative care for the terminal illness she doesn't have?

I might think more of the idea if she had terminal cancer or some diagnosable physical condition I could actually understand. But I still believe all she's suffering from is lack of care for a potentially treatable mental illness that she has a history of.

I expect it's probable she will die as no other avenues are working out and she's still largely refusing to eat and drink. What does it matter if she dies at the hospital or her crappy apartment? She never liked the apartment, anyway.
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NeedHelpWithMom Dec 12, 2022
Matty,

Ask her case manager if there are any hospice organizations that provide an ‘end of life’ care home or facility.

There your mom will receive care around the clock. This is what our family chose for my mom. We did the same for my brother when he was dying.

The care in both places were excellent. The nurses, aides, social worker and clergy could not have been better.

We could visit as often as we wanted.

Wishing you peace as you continue on in your caregiving journey.
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MattyZ,

What a tough situation to be in when trying so hard to do what's best for your mom when she's unable to make sound decisions and refuses to let go of the reins.

I fear that your sole option is to go for an emergency or temporary guardianship and conservatorship (G&C); these can be limited to certain areas of her life. The costs will be borne by her estate. If you have an idea of her assets, you should be able to find a probate/estate law firm to take your case and get this filed with her local district court. You can take the reins for now and get her situated and then decide if you wish to continue in that role or hand it over to a professional G&C agency.

I had to fight a long-estranged sib who reared her head and filed for professionals to take over and I fought it successfully, am now Mom's G&C. It was a baseless and spiteful filing by a long-disinherited sib and it was her 2nd time interfering with family estate planning. All was in place for me to take the reins as my parents had done all the pre-planning so I was DPOA, medical and initially, estate Rep. The action cost Mom's estate about 30k and I've yet to receive the bill from the toxic sib's firm. This is an expected cost in a contested filing in the US Midwest, yours may cost less.

The G&C is truly your sole option. It sounds like your mom requires placement in a memory care unit (MC) and possibly for long term. Rehab or transitional care units (TCUs) are hard to find due to critical staffing levels that are impacting elder placement everywhere. You need to start getting her on lists and DO NOT allow the hospital to send her home with you or to fail at living alone.

If your mom doesn't have any treatable physical illness like UTI and her labs are fine, she's likely angry as well as thrown by the changes of hospitalization, etc. This severe response indicates that her brain is in a delicate dance with advancing dementia. Try to find her a placement that has a program of reducing not increasing the use of psychotropic medications. Once she's leveled off on her prior med, try to prevent further medication use.

You have the MD in your court and that will help with the G&C proceedings.

Wishing you and your mom the best in all of this.
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Bandy7 Nov 30, 2022
Such thoughtful input as always Luta. MattyZ says hospital Drs have declared mom competent & an incompetence declaration is needed for guardianship. [I know you know all the in's & outs of that better than most]. That said, I've not read posts since mine here very early this a.m. & I only have a minute now so perhaps I missed something. I thought she was hoping to not have mom's placement responsibility be put on her?
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