Over the past year and a half my mother's health has been deteriorating. Currently she has gangrene left untreated in one hand, and refused further cancer treatment for the nodules in her chest. Both require a hospital stay but she has refused to go each time. She has gotten to the point that she can barely get out of bed, and refuses to let me try to clean her room, her sheets, herself or any hygienic care needed to the point she now has bed sores. I have been getting her food she requests (Usually from restaurants or fast food, she hasn't eaten anything I've cooked for her), getting her clean clothes, her incontinence pads, making sure I get her medications refilled, and making sure the bills are paid for the house and utilities and trying to maintain a clean home. Now she is starting to demonstrate hallucinations, at one point thinking someone had called and talked to her on the phone that was now in her trash can. (There wasn't a phone in there, and per our caller ID no one called except me to try and call her back when she called me at work and I missed it and didn't leave a voice message.) Then she began accusing me of starving her when I have receipts showing I bought food for her and brought it to her, but she'll only eat a few bites then tell me to put it away, and then doesn't want to eat it anymore the next day. I've begun documenting when I get her food now and what it is, what date, and what time because I am terrified and can't trust her recollection/memory anymore.
She needs to go to the hospital. Her doctors have told her this but she has refused multiple times. I've found out she had been lying to me this whole time about her calling and talking to her doctors for months. The biggest issue happened while I was away at work (I work full time, 8-5 mon through friday - and mon, wed, friday I'm generally not home till 630 to 7ish to take care of personal errands. She is aware of this schedule and I make sure when home her needs are met.) She had apparently fallen out of bed and couldn't get up. I came home and immediately called emsa. She claimed she fell around 1am but that was not true as I checked in on her before leaving for work at 7 and she was sound asleep in her bed. Emsa couldn't take her because she was able to answer their clarity questions, but she was willing to go until they told her she couldn't smoke infront of her oxygen tank and she then threatened to punch one of them.
Now I had her yelling for me at 8am in the morning to get her taco bell and when I told her she was having a hard time keeping solids down, maybe try some ensure first, she threatened to call the cops on me for Elder Neglect. I'm at my wits end. I can't be a full time caregiver for her, and I'm terrified of going to prison despite doing my best to help my mother even though she refuses at every turn to be seen at the hospital. She can't even stay out of her bed long enough for me to change out her soiled sheets or try to clean up her area. Any other family we have either are in the same boat or too far away to come get her, either.
I am drowning in anxiety over all this. I've gone so far as to call her doctor and spoke with social services with the hospital to have it on record how dire the situation is but I don't know what else to do. If I leave I can be charged for abandonment, if I don't do everything at her beck and call she will call the police on me for neglect. I worry if I get APS involved and they see the state of her and her room despite my explanations of why they will take her away and have me charged. I do not have a POA or Guardianship on her, nor am I a conservator. I'm just a very frazzled and terrified daughter at her wits end and do not see a light at the end of the tunnel. For now I'm continuing to document and record conversations with her, I even tried to get other family members involved to see if they can convince her to go but no dice.
If anyone has advice or suggestions please help.
Do you live in her house? Or does she live in yours?
If you live in her house: here's my suggestion. Find another place to live. I know, that sounds harsh, but so long as you live under her roof, she feels like she has "control" over you. You can tell her she can 1) hire full time aids or 2) go into a care facility, whichever choice suits her more. But your days of being her caregiver/punching bag are over and done with. If she refuses either of those options, then tell her doctor and APS that you are moving out and she will be left alone and is a vulnerable person. If you go that route, get names of who you spoke to, and keep records of what days/times you did this, just to cover yourself going forward.
If she lives with you, that makes things a bit more complicated, because it is now legally her residence. So, if I were you, I would call EMS again once she starts to act "strangely". Greet them at the front door (away from mom's hearing) and tell them you think she might have a UTI; she has been hallucinating; she has been complaining of chest pains; tell them she hasn't been in her "right mind". Tell them you think it is IMPERITIVE she be seen at the emergency room; that she has this gangrenous infection, and you are afraid she has become/is becoming septic. With her myriad of health issues, it should not be hard to find the correct one to merit a trip to the ER; an elderly person "just" falling and exhibiting no visible signs of injury will not cause the EMT's to "push" someone into going to the hospital. You may have to be insistent with them; but usually EMT's are pretty good at "persuading" recalcitrant people into going to the ER.
Once in the ER, tell the admitting doctor/nurse/social worker that you can no longer provide for your mother's care in your home; that your job is too demanding and you work too many hours, and it has now become unsafe for mom to remain home alone. Point out that she is refusing to see her doctors and now has gangrene; that she is not cooperating with you in her care. DO NOT allow them to browbeat you into bringing her back into your home. It's time for her to be placed into a facility where she can get the level of care that no one of us can provide alone in the home.
As far as her calling APS - let her. This will not be the first call they have gotten from someone greatly exaggerating their "lack of care" at the hands of a family member, usually amounting to nonsense. Besides, if they think she is not getting the proper care, they can file for emergency guardianship and then she gets removed with absolutely no say in the matter, which wouldn't suit her very much, would it? In fact, if mom is still relatively "with it", I would throw that back in her face the next time she threatens you: "Go ahead and call, mom. Because then either they come here and see that you're lying, or they come here and see that you're telling the truth and then they remove you to a nursing home because I clearly can't take care of you properly." I'll bet she changes her tune pretty quickly after that.
Good luck.
I've called the Doctor's Office to let them know that Mom has been admitted and I am unable to provide the adequate care she needs going forward for her needs. Since this is on Sunday, per the after hours office I'll have to call back Monday and talk to the on call nurses/doctor so they are made aware she is an unsafe discharge and with my working hours and capabilities I can no longer care for her. I have also consulted a lawyer friend of mine regarding the local state laws (Oklahoma) for her situation and accusations. From their understanding of my situation and the state laws, it's found I am considered an unwilling participant/caretaker since I never voluntarily agreed in writing or anywhere to be her caregiver - instead it was brought out of necessity since we lived in the same dwelling and she was unable to keep up with bills and maintenance of the house in her state. There is little proof to substantiate her claims I have 'abused' her in any way or 'neglected' her with the receipts I have of getting her food, groceries, paying for repairs and maintenance of the house and yard, etc. In addition, we share a joint account - and it can easily be tracked my expenditures for the house and groceries using my money over hers (I make nearly 1100 more than her SSI pays.)
I will post more updates as things unfold. Thank you all for your kind words and help. I'm no longer terrified. Still stressed, but now I feel like there is some hope for this situation.
Reread and follow the advice notgoodenough gave you as the first answer at the bottom of this thread . Focus on the paragraph that starts
” Once in the ER………”
Get an ambulance to the house and tell them she needs emergency services and refuses, if they don't take her after seeing Gangrene, you will have that as back up that you did everything to get her help.
If the ems have seen the conditions she is living in, they are mandated reporters. So, if the last ems visit was a while ago and you haven't heard from them, possibly not a problem.
Best of luck, this is a crummy situation for sure.
Thankfully she had me sit with her and call EMSA and she willingly went with them this time. While she is out I can finally get things togethor to get her room cleaned up properly so once she comes back stabilized (assuming they don't take her to another facility) it'll be better for everyone involved.
Thank you for your kindness in answering.
I wanted to add something else to my post. It is not just the doctor at the hospital who decides when and where mom gets to discharged to. Hospital doctors are only looking at what is medically necessary, and don't really concern themselves with the ADL's.
I made it a point, when my mom was in the hospital and the "discharge planner" was telling me the doctors said mom "would be fine to go home!" (she so would not have been) to ask the nurses on the floor what time PT would be in to "walk" mom, and I made it my business to be there when they came. I chatted very nicely with the PT, voicing my concerns: mom would have to navigate up an inclined driveway, 16 steps just to get into my house, and then another 12 steps to get up to her apartment. The PT looked at me, smiled and said "Got it." Next thing I know, the discharge planner was asking me and mom about where she would like to go to rehab to get her strength back before even trying to get home.
The more people you talk to honestly at the hospital about your situation with mom, the more likely you will have someone "behind the scenes" telling the discharge people that it would be unsafe to send mom home at this point. Especially the PT staff and the nurses. They see far more than the doctors ever do, and most of them want what's best and safest for their patients.
Good luck, and again, I'm glad you were able to take this first step and get mom to the hospital for treatment!
All these give you time to figure out her finances as to IF she will end up having to do a spend down and private pay for the day once she moves from being a patient on Medicare to becoming a custodial care resident in a NH. NH are private pay or LTC insurance at 7K-15K a month & if she is low income enough she can file for LTC Medicaid program.
Ltc Medicaid - once it’s filed for - is very restrictive as to what she can spend down $ on, it tends to be $ to be only used for her care and her needs. So any costs for that house in her name really shouldn’t happen. And this spirals down to being an issue if you want to have the house sold because it will take $ to get it clean up, decluttered and do some degree of spiffing up even if it is just to make it more secure for a Realtor or buyers to walk though. If you pay for stuff, it’s hard for you to be reimbursed from Act of Sale $ as it’s moms house and that is technically “gifting”. Medicaid tends to view what we do for our elders as done out of a sense of family responsibility without any expectation of compensation. But if you do some things for the house from her $ before application filed, that’s a different story. Nothing crazy like putting in a pool but paying to get all nasty carpets & drapes out and new ones installed, paying her property insurance, repairs needed for safety… stuff like that should be ok. The house can remain an exempt asset for her lifetime even if she files for LTC Medicaid, so you can continue to stay there as it is already your existing home. But once she’s on LTC Medicaid, all house costs will be on you 100% as all her income basically becomes a paid to the Nh required Share of Cost by LTC Medicaid program. And once she dies, the LTC Medicaid program will have to attempt to place a lien or claim onto the property for all costs Medicaid paid for. Could be six figures if mom lives awhile. It’s done via MERP. If you want to deal with it you can but cannot be forced to.
Now if you are over the house and can’t wait to get out you can. And not your responsibility to do or spend on it. My experience is that folks like your mom will be adamant that they are NOT selling their home that they intend to move back even though that is so ridiculous… and the house goes blighted, interior goes nasty, utilities get pulled, taxes go unpaid, yada yada. As you already live there, and have a job so have income, you actually are in the position to take your time to make a decision that makes sense for both what is best for your mom and for you. If anyone wants to tell you a decision has to be made asap, not accurate as house can remain exempt asset while she is alive.
If mom was secretive on financials, do your best to find what you can to determine where she is for her ability to private pay OR impoverished enough for LTC Medicaid. And be sure to find that POA you did with your mom… and always sign everything as “OffKilter as POA for June Kilter”.
I've already accepted it's quite possible the house will be lost for her care. In truth, as much as it's a nice idea to be in a house fully paid off, if it's at the cost of freedom or mental health? It's not worth it.
As far as I am aware she has Medicaid with the local state (Oklahoma) and UHC additions. From discussion with the case worker the main concern really is checking her assets for the past 5 years. The hitch in it is we shared a bank account. Her SSI payments and my income went in because it 'only made sense' to keep it in one account to help pay the bills. If I knew now what I did then I would have said 'absolutely not' and kept it separate.
As it stands I still plan to move out by near end of the year. The only reason I haven't done it yet is two things. 1.) The concerns about abandonment and 2.) I took on a hefty debt for previous house repairs for her because at the time she didn't have any credit score to get a loan for the necessary repairs, which she has not paid me back on or helped with. The good news is that debt should be cleared by October/November which coincides with the move timeframe.
Thank you so much for responding and if you have anymore advise or 'heads ups' you can give me regarding this situation it is most appreciated!
She's gone.
Last Friday we were submitting paperwork for Hospice covered under her insurance. We wouldn't really know or hear anything till after the Labor Day Weekend. I come into work this morning and I got the call from the hospital. She's passed before hospice could be decided.
I suppose this ends the saga, now. I know what needs to be done, funerary and will wise. I just wished it didn't end this way. Though I feel, looking back now from when I first made this post to now, it was an inevitability.
Thank you all for your kind advice, comfort, and well wishes. This forum has helped in so many ways to maintain myself through this whole ordeal. I'll still be sticking around to offer my own advice/comfort where I can. Until then I just have to take it a day at a time, and get the Estate in order.
Thank you. From the bottom of my heart.
I was able to speak with Mom's case manager and social worker and advised them exactly what you all suggested. I also added in that as it stands Mom has also been keeping me in the dark in the past regarding her conversations with doctors (if there were any at all) and the threats of calling the cops on me for neglect because I was enforcing what previous doctors advised regarding her diet and being unable to keep solid food down ontop of being unable and unwilling to let me function assisting in personal care/hygiene needs. I reiterated with my job demands and hours plus an upcoming move in 3 months that I am unable to care for her nor have had any capacity to do so in the past in a way that would help her thrive and become independent. Right now the extend of what she needs is still to be determined but they stated she most likely would need to be in a rehab for at least 20 days before they consider releasing her. Long term care may require a medicaid spend down voucher assuming she isn't in the time table for hospice due to her condition and cancer progression. I noted the names and date/time of who I spoke with and they understood my predicament. I firmly asserted too that I just live with her as a daughter to help pay bills and did not agree to be any caregiver/caretaker and do not have a POA/guardianship or any legal designation that I am the one responsible for her well being and care. The case manager was shocked at the treatment I described but understood and she will be discussing any and all facility options with Mom alone without my involvement. Which is fine with me.
My only fear now is Mom making a scene to get kicked out of the hospital or to be sent home but I imagine her caseworker will handle that going forward.
My suggestion. Let them call. This is emotional blackmail.
I haven't received any calls from either my mother or the hospital blessedly. I have not checked in on her status so far but will most likely call in tomorrow to see where she is at currently with the Nurse and/or doctor. If it is an emergency they will reach out I'm sure. For now I am steadily gathering things togethor for my move in the next few months and finally able to relax while they take care of her. I am just glad that they have her safe and with the care she needs for now and I'm not falling over from panic anymore.
If anything else comes up I will update accordingly. Thank you all again for your kindness and help!
I love that "The universe has a sense of humor apparently".
It does! A very ironical one. My brother and I would laugh and laugh about the ironical vagaries of life. Endless and ongoing, and if we can't get a laugh of it, what's the use of it all?