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My mom has dementia and has had two strokes. She can not talk or understand much at all. I have advanced kidney disease and need another transplant. My current one is falling. I was told the wait list for a medicaid waiver in California has a 2 year waiting list to get her in a place. I can't even sign her up for it because I don't have medical POV only financial POV.


She doesn't get up to use the bathroom anymore and just goes in her diaper on her bed and then takes it off all the time and then goes all over herself. Im constantly washing clothes and sheets. I now know I should have never taken her home from the SNL she was after the stroke back in April. She's gotten so much worse as has my own health. Im stressed out and its not helping my condition. Im an only child. I was told she would need to be admitted to the hospital and then I refuse to take her home but she doesn't need hospitalization.


They are working on working my boyfriend up to donate a kidney to me. There is no one else who can care for her anymore. I can't mentally handle it anymore. If I get her into respite care can I refuse to take her back from that? Can I just take her to an ER? She only has her ssi Medicare and medicaid. Its all so complex. I don't get how I can be forced to care for her when I'm on disability myself. She's running my house on top of it because of the bathroom problems.

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Try dropping her off at the ER. Keep stressing that you as a medically needy person cannot deal with the lifting, the playing with and throwing poo, the wandering or whatever.
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I'm so sorry you are in this situation. I had commented in another thread earlier today and drew some criticism for my advice but I'm going to advise the same to you. You need to do whatever it takes, whatever you have to do, to get her out of the house and into a better environment. If that means calling 911 for any perceived possible reason, so be it. I recommend transport by ambulance because that is the safest and most reliable (she will be admitted to ER and seen right away instead of possibly sitting in the ER waiting room). You get her into the hospital and this time, as you admittedly know better now, you absolutely refuse to take her home. It is not safe for you or your mom anymore. You CANNOT be forced to take care of her, in fact you are no longer capable of providing the care she needs, for her safety and yours.
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lealonnie1 Nov 2021
Here in the Denver area, nobody is being taken to the ER by ambulance unless they are literally at death's door (due to Covid)! My neighbor's DIL (about 60 y/o) was visiting on Sunday and passed out 3x in succession; she called 911 who showed up but refused to transport the woman to the ER. Instead, a different medical service showed up to evaluate the woman and prescribe meds and advised her to see her PCP on Monday! I was shocked.
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If you can not care for her and there is no one else that can or will you can contact a lawyer or contact your local Agency on Aging and ask that she be made a Ward of the State and that she need a Guardian. A Guardian will be appointed by the court . You could also call your states Hotline for Elder Abuse and explain that you can no longer safely care for her.
If you go this route you will no longer have any say about the care that your mom gets or where she is placed.
If you are talking to a medical team about your own medical problems have you discussed the situation with them? I am guessing there is a social worker involved.

If you take her to the ER do so if there is a legitimate reason to do so, do not just drive up and drop her off. Ask to talk to a hospital Social Worker and explain the situation.
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mstrbill Nov 2021
Agree that this a path that could be taken, but the process takes too long.
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I think you are in an emergency type of situation. I would call your Office of Aging and find out what can be done. You need this operation and she needs someone to care for her.

Medicaid, did they house sell at a good price. Medicaid expects Market Value. Also, that the proceeds go into an acct that is only used for her needs. You maybe able to get around tbat because of the situation.
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You and bf bought the house from mom. Did you pay fair market value? If not you need an elder law attorney to get this straightened out. And yes, Medicaid will look at the home sale as a gift and mom will be subject to penalty and ineligible for Medicaid.

It simply does not matter if you did not intend to cheat the system. That was the affect.
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Raveness Nov 2021
About 10% under value.
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Lizzbitty my transplant i had was still functioning well in April so I was not in kidney failure then. My mom was not as bad as she is now. I got pressured into taking her home, they just wanted her out. I didn't know then what I do now about that so no its not my fault. I didn't know I could refuse, the social workers were borderline predatory. The system in this country is awful. It was a rehab place.

We got the house for only about 10% under value. It needed a lot of work done. Her DR is recommending hospice. But I need to stress to them that it needs to be inpaitaint hospice. I don't have money for lawyers. I live on ssi disability. Maybe I can insist they find a pending medicaid bed if they won't do hospice in a place. I was told by area on aging it's a 2 year waiting list for long term medicaid and because I only have financial POV and not the medical POV that I couldn't sign her up for it anyway. What are people to do in an urgent situation like this? I feel stuck.

Im stessed and sick. I may need to start diyalisis no one knows when. I recently needed a blood transfusion from servere anemia from the kidney disease. If bf can donate his kidney or we do donor exchange it won't be long. I've now gotten bad anxiety and depression trying to take care of her. I don't understand how they can basically force me as a now sick person to care for her. I have been caring for her on my own since 2016 when it was obviously more manageable. I think the stress probably contributed to my bad health. I love my mom but I'm not going to continue to put my own deteriorating health on the line for her.

I feel awful that I may have to literally leave her at ER to get her care, but I will do what I must. I just hope I can't be charged with elder abandonment. Its ridiculous the red tape we have to go through. Im crying writing this im so stessed out. She constantly calls for me but doesn't need anything. I have to take care of myself now. This next transplant would be my fourth one. I can no longer give up my life and health. Doctors don't understand and try everything to keep them at home. Sorry for the rant, I really don't have anyone that understands my stess and frustration.
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mstrbill Nov 2021
You are right Raveness, the system IS awful, there is a big donut hole that none of the professionals can give you a clear answer or direction out of that you have fallen through. I was once at a point of slipping through that hole as well. I fully understand your stress. None of the professionals (Dr's and nurses) would give me any clear direction as my father was getting worse and worse with Parkinson's. I still had to work everyday and we couldn't afford in home help. I was at my wits end. Finally at one point I was talking to his Dr and I basically cried out that I don't know what to do and she hesitated but finally said "take him to the ER, it is YOUR decision", with an emphasis on your as if she wasn't supposed to be telling me that. She said it twice. It really was the only option at that point, but the hospital doesn't like dealing with dementia patients. The reality is though is that there is no other alternative, no other system in place for people like you or me. It was the only option for me at that point. Sometime you have to play the system when the system is broken.

Please don't worry about "elder abandonment", it doesn't apply in a case like this. You are unable to safely take care of her needs and your health as well. No prosecutor will waste his or her time as there is no case. You don't have the capacity to properly care for mom, you simply do not have the ability anymore, nor do you have any help. That is not your fault.
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I would call Adult Protection services. You need this operation and time to recover. Mom needs a place to go to. You may want to express that you probably will not be able to ever care for Mom. You may need to allow the State to take over her care. You have been thru this transplant thing before so ur are aware what goes into recuperation.
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If her DR is recommending hospice in any form (including mom in your home, with someone else helping), I say forget any preconditions on accepting hospice, get those papers signed and start that help now. It will be an improvement on what you are dealing with now. Including equipment, like oxygen generator, and hospital bed. Calling out for you means she does need something. And, a hospice professional will be better able to diagnose those needs. Listen to her doctor.
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Raveness Nov 2021
If it's not inpatient hospice then its not going to work, so then would need snf ir a memory care facility. I think they are trying to suggest it as an option. Home hospice i will still have to do most of the work. I literally can't with my health anymore. Her strokes wiped out the language part of her brain. My name and "okay" are all she can say. She does it even if I sit next to her and she need anything. They told me that's from the stroke.
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I couldn't get my mom on medicaid, as suggested by the lawyer, as I couldn't find all her documents. It was a long saga....my mom had vascular dementia, kept falling and ended up bedridden.

She was in several facilities, then t took her home on home hospice. The first home hospice she was on wouldn't put her in an inpatient hospice facility. I dropped then and tried to care for mom myself, until one night I became overwhelmed with diaper changing and called 911. She tested positive for c difficile in the hospital, so they treated her and then wanted to send her home to the same environment.

I said I couldn't disinfect it enough to take her home so early..... Social workers and doctor very nasty.

She ended up in another snf but the pricing was ridiculous
..... I took her out after she was there for a little under one month, and got her on a second home hospice.

The system is terrible. Snf's without medicaid are ridiculously expensive. I paid for 2 months upfront, and got a partial refund when she came home on home hospice.

I found it impossible to get her into an inpatient hospice facility, and didn't want her in another snf.. Way too expensive..... I cared for her at home on home hospice, and she died in March 2021.

The whole thing took a terrible toll on my health...... My weight fell into the 70s at one point.

The system is broken, and more inpatient hospice facilities should exist.

Do you think you can get a guardian for her to relieve you of all this responsibility and stress, as your own health is failing?
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Raveness Nov 2021
Unfourtunatly she has no one else. We are both an only child. Her or I don't have any money to pay for any nursing home care. I know she'd qualify for long medicaid. She already has regular medicaid.They can't make me take her home from ER. So will be sticking to my guns on that.
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Yes, you can just bring her to a hospital ER. When you get there, tell the triage nurse that you need a 'Social Admit' for your mother and ask to speak to a social worker.
They will send one to speak with you and then you explain that you cannot and will not take your mother back into your home because you are unable to care for her.
They will admit her to the hospital and will keep her there until they find a facility who has placement available for her. Once she's placed you can look at different facilities and can move her if you like. The facility she's placed in by the hospital will take care of her Medicaid application too.
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amoeba Nov 2021
That sounds too simple to be accurate, and trying it could result in refusal, someone receiving a bill for uncovered services, and/or delirium of her mother resulting from the experience. Still, I accept that there is an urgent, unmet, care need here - for both mother and daughter. If the OP tries it, succeed or fail, I hope she will report the result on this forum so others may learn.
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Raveness, take her to ER & say you need SNF placement for your mother as you are no longer able to manage her because you are sick ..& need surgery. That’s it..& they will take care of it. Hugs 🤗
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I wonder how OP was able to handle her problem.
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