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I’m just really unhappy as my reluctant caregiver continues. And no, I will not step away or give up POA. In my belief system, it’s cruel. Mother is at a hard place where she’s too with it for the state to “just take her.” We already learned that in our dealings with APS. She’s really a lot more sharp than when she first showed up at my door in October 2022. But the cumulative stress of all of it… My dad’s death January 2022, handling his estate, then she lands in my life six months later. Handling her roach infested hoarded house, the several rounds of her utilities being moments away from shut off, her abruptly changing banks and where her SS was deposited ( but failing to get some of her auto pays changed.) Her dispute with a bank over her owing money $60 on a safe deposit box, and angrily throwing her key at the bank employee. Her urgent extensive neck surgery and recovery. The hospital delerium where she was yelling at me to take her home and they nearly succeeded in sending her two days after a six hour procedure. (I delayed that thanks to some tactics I learned here). Her urgent dental extractions for abscesses days before this surgery, almost didn’t get that done in time due to a miscommunication between the dental and surgeon office. The multiple trips to get the rest of the teeth pulled and many adjustments for dentures. (I have to go to her home 10 miles away, bring her here to the dentist, then back to her home). The numerous numerous trips to big city academic medical center for this plus her osteoporosis dr. The need to tip toe around her delerium episode. She seems to remember staying extra in the hospital and being upset but hasn’t yet blamed me for it. Where things stand currently: Her money is more stable, though she’s not paid one surgeon. She’s years behind on property taxes. I’ve called the county and they say she’s on a deferral program and won’t lose the house. (It’s in crap condition but paid for). But now, thanks to getting a significant raise in her SS after my dad’s passing, she can handle her bills. The neck surgeon has discharged her. Big city osteoporosis Dr Dexa scan and visit next month. Getting second spinal injection for thoracic issue Thursday. After that an ablation. This Dr is also an hour away, but the traffic and parking are easy. Last of denture adjustments next month. I’m just sitting here dreading her injection this week. It will be an all day ordeal. The first one she had, she did great. Sort of. She was alert, NORMAL, verbal for hours from when I got her in my car all afternoon. I called later to check in her, totally out of it, uttering nonsense. I suspect she took some combo of her Norco, gaba pentin, Robaxin that did it. Im just so tired of all of it. I hate being in her smoky, stinky, dark, still dirty (but less dirty) house. I go every few days to wash dishes, take out trash, change her sheets. But the rest has just piled up again, cigarettes ashes all over, random spills all over carpet, Sorry just venting.

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"it would be a less awful situation if she were in a decent facility, I never set foot in her house again, and she was getting supervised by professionals! To know that at her next hospital stay nobody expected me to care for her by myself." I totally feel you, Oedgar. You said you were here to vent. Please don't feel you have to defend yourself.

I think what lealonnie said applies to both of us. "When the pain the in-home care causes you becomes greater than the pain placing mom causes you, that's when the decision is made." Until then, we continue to bear the pain, and sometimes we need a place like this to vent.
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Oedgar23 Feb 14, 2024
Thank you, Lily. I think you have the most accurate grip on my situation. Burnt said I enjoy this and I’m being a martyr. I enjoy no part of it. The only part that is helpful is that I felt like She got some help as she was in a very precarious situation. I can’t stand it, can’t stand her, and don’t enjoy it. She has “mostly “not verbally abused me in the year and a half or so we’ve been doing this. There have been a few moments, but mostly she tells me she appreciates everything I’m doing. She got a little out of hand with me yesterday, and I was able to effectively firmly, but politely put her in her place. If this could be over, I would immense relief. If I had some straightforward funding to put her in a facility, I would do it. But, I am not her guardian, so if she disagrees with being in a facility, I actually cannot make her stay there. She would still have to agree to it. She is open to assisted-living at some point, but not quite there yet. I just think something will happen medically, and accident, etc. And she will land in the hospital and then that will be the path to a facility. yesterday I could hear her wheezing from across the room but she has no complaints about her breathing and was at 95% on Room air a few days ago at the doctors office. At some point I think her lifetime of smoking is going to necessitate a change in her care situation.
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Oedgar23, hang in there.

For money, check out MIPPA. They will help provide funds for all your medical stuff and at least in my state, will help one apply to Medicaid. It is a federal program.

You are doing a wonderful job getting a messy situation, that was not yours, into some kind of controlled chaos.

Okay to blame the gabapentin...it seems like the docs like to blame it for anything that goes unexpectedly.

It also sounds like your Mom is having a tough time emotionally also. She is lucky to have a daughter like you. Hang in there.
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Regarding hospice if it should come to that and if it is determined she is actively dying or approaching that stage then there are facilities just for that purpose. A social worker at.the hospital my mother was at during her last stay explained the local options regarding them.

Perhaps researching that option might relieve you of the worry of not wanting her to be in hospice in the hospital, in her home or yours. I realize there are still many other serious concerns but since you mention that perhaps you might relieve yourself of that particular worry.
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If you are determined to keep going with this, why vent that you are 'overwhelmed' and 'really unhappy'? Why is it 'appealing' to continue caring for her? Perhaps a counselor could help YOU sort out your ideas.
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Oedgar23 Feb 14, 2024
It is not at all appealing. IM just in this mess too deep to gracefully get out.
What I should have said in the prior reply instead of using the word appealing is… it would be a less awful situation if she were in a decent facility, I never set foot in her house again, and she was getting supervised by professionals! To know that at her next hospital stay nobody expected me to care for her by myself. After her last surgery, I was doing the coordination with home health, many of the dressing changes in between nurse visits, driving her, errands etc. Also one day home nurse called me alarmed at her low BP. I’m just ready to have at least some of the stuff off my back
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Defining "step away" and what it would mean.

Oedgar, would placing your mom in a good assisted living facility (or whatever care is suitable) mean stepping away to you? Because it wouldn't to me. I'm a person who has been caregiver for four family members - all at home, no facility - and now that I'm older, I realize that I can only do home care until a certain point. Yet if and when my LO goes to managed care, I will not be stepping away. I will be there doing whatever I can, I will remain his loving wife, I will be his strength and his guiding light, but without the burden of hands-on care.

To me it is a loving act to find professionals who provide professional care. That's not stepping away. That's stepping up.
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Oedgar23 Feb 13, 2024
Putting her in a facility would bring me some, but not complete relief. It would be a lot more appealing for me to continue caring for her. I’d be willing to remain involved as long as she’s polite to me.
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OEdgar, I have to add that I agree with you in not abandoning mom or giving up your POA. My mother drove me bat-chit crazy, pushed every button she installed on me, defied everything I asked of her, lied thru her teeth to me continuously, but I felt the need to stick it out with her because she had nobody else. I didn't like her or agree with anything she stood for, but I loved her. Love does things that doesn't always make sense to others. It puts up with A LOT OF CRAP before it gives up. It's only the common sense and sense of self preservation that stops love from taking these mother's into our homes or doing SO much for them that we wind up killing OURSELVES. It says nothing about this in the Bible, nope, but it's dictated by our hearts what we choose to do. I always set down firm boundaries with mom and stuck to them. For MY sake. And when she died at 95, I felt no guilt or regrets for what I "hadn't done". Just a sense of relief and peace that both of our suffering was finally over. No, we're not martyrs either, a word thrown out around here almost as often as narcissists. We're just people who feel the need to do the right thing for those we love, but on OUR TERMS. 😊
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sp196902 Feb 13, 2024
"No, we're not martyrs either, a word thrown out around here almost as often as narcissists."

When a person is sacrificing their own physical and mental health and well being to care for abusive parents, mentally ill parents, or whatever personality disorder or behavior said parents have they are in fact being a martyr, especially when this parent is continuing to abuse and use them as an adult.

It seems the death of someone who is abusive or difficult or mentally ill or just unpleasant in general renders many people with amnesia in regards to how said parent/elder/loved one made them feel during the care giving process or just in dealing with said person in regards to life in general.

And I agree boundaries is the only way to survive this but for the OP this is hard because mom is not in a facility she is in her home and the OP feels obligated to take on more care for mom than she has the energy and strength for and she is suffering. She unfortunately can't move mom into a facility so she is in a pretty bad in between stage waiting for mom to get worse so placement can be covered by medicaid and being forced to continue sacrificing her own life to be moms cleaning lady which is a never ending job with moms refusal to clean anything and her hoarding behavior and chauffeur to and from medical appointments and dental visits, etc.
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From OP's replies below it sounds like she is between a rock and a hard place here. Mother is basically calling the shots and OP is doing for her mother because her guilt in not doing would be too much to bear.

Why are these elders always getting their way? The mother won't take an uber or won't do this or that? Dentist appointments can be scheduled out so those can be done with the senior transport as dental trips don't qualify for life or death in my opinion.

If something were to happen to OP and she could not be there for her mother the mother would just live in her filth and squalor until she passed away. That's just how it is. There are no laws stating a person has to live in a clean home. Now if she was hoarding the outside then complains from neighbors would bring in code enforcement but that is not the case here.

Mom should also be using funds from her savings to pay for a weekly house cleaner. There is no point in her holding onto that money as it is preventing her from getting medicaid services and it really is not in her best interest or the OPs best interest at this point.

I am surprised mother has a car and car insurance and is able to drive around town.

Also concerned about OP's mental and physical well being in taking care of moms IADLs.

The one positive for the OP is that she knows NEVER to do in home hospice for her mother as she has read on here that a person can go on a long time on hospice.
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Oedgar23 Feb 13, 2024
Ive also made it clear to mother I won’t do 24/7 care nor home hospice for her. I described to her how I even decided to put my beloved dad into a small care home for hospice. We thought he had weeks, but it ended up being less to an a week. I will feel no guilt in doing That when the time comes for mother because I’ve been very very honest about what I’m NOt willing to take on. She has funds to pay maybe two months in a facility and that will be part of Medicaid spend down.
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If your Mom has roaches and vermin this is a Health Dept Problem. My daughters classmate was left in an apt when his Mom was taken out by APS. He was a blob laying on a sofa bed and APS did not thing he needed help. He is challenged and calls were made to APS daily that the smell was permeating the other apts. APS ignored the calls. I have a friend that is a SW and called her. She had work with this Mom and son so she called the Health Dept and they took him out.

If Mom is hospitalized, have her evaluated for 24/7 care. Take pictures of her home. Tell them without the help u give her she would be living in filth and not seeing her doctors.

You, sign her up for the Senior bus. They can take her to appts. See if she qualifies for in home Medicaid. My mantra "I am here to help people find a way, not be the way." Find her the way.
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Oedgar23 Feb 13, 2024
She, thankfully, no longer has roaches or rats. We paid pest control and had that issue dealt with. They have not returned. She used to have in-home Medicaid help, but she was not honest in her application to them. She has a little bit beyond the $2000 bank account limit. When she had to reapply, Medicaid finally figured this out. So she has no more home health aids. The only senior bus here requires a week to 10 days notice, and does not take them places like her Houston doctors. She is still capable of driving around her small town. I just have to do everything else.
I am considering privately giving the doctor an update on her living conditions. The last visit, he seemed so pleased. I would like him to know that her house is still a disaster. It’s better than it was, but not normal. I’d like it put in his head to start thinking in terms of how to get her into assisted-living.
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This is hard for an outsider to get the head around. You “go every few days to wash dishes, take out trash, change her sheets. But the rest has just piled up again”. And you are “just so tired of all of it”. You "wish she’d never come to my house that day" - though it would have been just as bad but you wouldn't have been involved in it.

Clearly without your visits every few days your mother’s living conditions would be untenable, and equally clearly you are hating the whole thing. However you “will not step away or give up POA. In my belief system, it’s cruel”.

It’s hard to understand your “belief system” that thinks this is OK – for her or for you, or indeed for the neighbors who live close to this “smoky, stinky, dark, still dirty (but less dirty) house”. It’s probably ripe for a fire or a pest infestation. I can’t find anything to justify this in the Bible, and I’m not clear how any other “belief system” props it up. Have you thought about talking it out with a counselor for YOU? Not about your mother's situation, but about your belief that you have to be involved in it, just because you answered the door and now you know about it.
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BurntCaregiver Feb 13, 2024
@Margaret

There's a third option that would be a perfect fit for the OP's "belief system". Move mom into their house.
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If your mother can grocery shop and walk why isn't she capable of taking out her trash and doing her dishes? Is this her mental illness and hoarding at play?

Why cant she take an uber or taxi to her doctor appointments?

Why not have her use paper plates and plastic forks etc to eat with so you dont have to wash her dishes during the week? Takes some burden off you with that. I just see her piling up dishes for you to wash because she won't do it.

If she is so with it why are you having to do anything for mom?

You and her doctor are giving her much more credit for her farce of iindependence than you should. If you weren't doing the Lions share of managing her life then, no - she is not doing well at all.

Her house is in disrepair now can you imagine another 10 years of her not doing maintenance and all those food spills and cigarette ashes and filth? Since she is behind on property taxes technically she no longer owns that house unless she pays all past due tax liens. She is lucky they are not foreclosing on her because of the unpaid taxes.

Your mother has no assets to afford AL so her only choice will eventually be a LTC facility. I don't think she is ready for LTC but then who is? I don't know if you have to be decrepit and unable to go to the bathroom by yourself to qualify or if anyone can go to one.
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lealonnie1 Feb 13, 2024
I shake my head when elders Showtime for docs who then deem them to be doing SO GREAT when they have no idea what is going on, seeing them for 10 min a pop now and then! Naming the potus does not make an elder dementia-free, either!
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I very deeply identify with your situation. Mom’s 2nd life partner died. She was a “clean hoarder” so no filth or roaches, just mountains of “treasures” that she had big plans for someday.

Driving 10+ miles just to get to her house to leave for an appointment. Things neglected until they became an emergency. Disputes with banks and insurance companies. Surgeries. Inappropriate discharges from hospitals when she couldn’t even walk, (yet was somehow ok to live alone). Blame.

Now my mom is bedridden in hospice at home. Like you, I will not walk away and just let the state take her. Although I am seeking a legal route to place her soon because it’s all too much for me to bear. My heart breaks for you, because it’s SO hard, and everyone says “place her” as if it were just that easy. 😢
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lealonnie1 Feb 13, 2024
There is nothing "easy" about elder care. When the pain the in-home care causes you becomes greater than the pain placing mom causes you, that's when the decision is made.
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Feel free to vent away, dear Oedgar. I must say, however, your mom does not seem "too with it" at all, not even a little.

I agree with Alva in saying "Try not to risk your own health, as without you, your Mom cannot last any time at all in this." Nor should she.

Good luck.
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Oedgar23 Feb 13, 2024
Well, I say with it because she’s oriented to time, person and place. She understands what’s going on. If you were to ask her who is the president etc. she will know the answer. She understands how to pay her bills and how much money she has. She knows how to grocery shop and plan meals. But yes, she does have mental illness. Depression and anxiety formally diagnosed. My brother, a masters degree. Therapist, says she’s a host of cluster B personality disorder, symptoms. She has pain pill addiction issues. She is “mostly doing as she supposed to with her pills, except for the incident on the day of her last back injection. What also works against me is that she was a legal assistant in her former career, so she is hyper aware of what she can, and cannot do, and what I can, and cannot do. She is actually super super intelligent, and tends to use it against people .
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Your mother belongs in assisted living or maybe even a nursing home.

It's time for both of you to understand the reality of her situation.
Assisted living and nursing homes are not just for people who are out of it with dementia. These places are also for people who are mentally ill or they fall under the category of 'non-thriving adult'. Your mother sounds like this term fits her. She is not still "sharp" if she's in the condition you describe and is living in filth and squalor.

I'm going to level with you here and it comes from 25 years of being a caregiver to all kinds and many like your mother.

You washing dishes a couple times a week in a filthy, hoarded house or running her to doctors and propping her up like you are is not helping anything or anyone. In fact, it is making her situation worse in the long run because no one person can successfully manage a situation like your mother's.

She belongs in assisted living or a nursing home. Make her understand this. It's time for you to make some boundaries and force your mother to accept reality. Venting about it won't help you either. Pretty much venting and complaining are the same thing.

It's time for reality. Your mother needs to be placed. If you have to force it as POA, you can. It's for her own good.
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Oedgar23 Feb 13, 2024
She can still walk, dress, toilet, pay her bills with little oversight. I don’t see her qualifying for LTC. Her PCP thinks she’s doing great.
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Thank you, Alva for your kindly worded answer.
I just have to add and make clear that I still wish she’d never come to my house that day. We only opened the door because we were expecting DHs parents. We had no peephole, and when the knock came, I asked DH to get the door. And then. I heard her voice, saying she had medical problems. She had a paid helper with her, and we aren’t slam the door in your face kind of people. After that discussion, and seeing the state she was in, I told DH sadly “OMG there goes my freedom.” Because I knew what a crap show it would be. We called lawyers, trying to find out what/if I was obliged to do anything.
I just wish that day we’d not been home, not opened the door etc.

I really would like to place her. At the moment, she can walk (but poor balance ) can toilet, dress etc. I don’t see her qualifying for LTC Medicaid. Her PCP thinks she’s doing great, has praised me. I don’t even have a reply when he does.
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pamzimmrrt Feb 13, 2024
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Your honesty in telling us the following:

"I’m just really unhappy as my reluctant caregiver continues. And no, I will not step away or give up POA. In my belief system, it’s cruel. Mother is at a hard place where she’s too with it for the state to “just take her.”

Gives us the relief of just knowing this is still, despite the heaviness of the burden, what you wish to do. So we are free to read your missive to us as an update, and just tell you we are sorry for how tough this is.
I do think that eventually it will be recognized, after some semi-disaster for your Mom, that she must be placed. At that point she will be safe, and you will be relieved somewhat after setting fire to the heap that is left.

I am so sorry. You aren't alone. I know you know that. Not everything can be fixed; not everything has an answer. Try not to risk your own health, as without you, your Mom cannot last any time at all in this.
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