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This week, and every day for 6 years, my day goes something like this:


Wake up, go downstairs, prepare breakfast, change mom’s bandages on her arterial stasis ulcers, get cussed out, get mom dressed and sat at the table. Then she and my daughter eat, I clean dishes, go to moms bedroom, clean up urine, feces, food, soda cans or whatever else was thrown beside the bed the night before. After that I get the sheets off the bed, put new ones on, start the wash. She huffs and puffs about how long it takes (I've mastered doing it quickly) she lays on clean sheets, proceeds to complain as I get my daughter settled to homeschool, then I go to my office (in house) to work. Hospice nurse comes afterwards around 12 or 1. They give me MORE things to do-after they leave (mom announces need: sodas, cigarettes, meds whatever) I go get the list at the store. Come back, aid comes gives bath if mama allows it (it's like bathing a cat) change bandages again- then I'm back to work, I work till 4, go downstairs, fold clean sheets, start dinner, get everyone fed, check daily school work. COLLAPSE into the bed, then do it again!


Yesterday, I spent the majority of the day cleaning up boxes and washing clothes in my *spare* time. Mama ordered hundreds of dollars of useless junk online I now have to send back.


Today, mom needs suppository (guess who has to do THAT?)


Then my sister calls...


She is EXHAUSTED, what from? 🙄 She had to go get her new extensions in her hair, get her nails and toes done and had to go have a massage. SO exhausted she says!



Meanwhile, I'm having to insert a suppository up my mom's whatnot while she screams obscenities at me and tells me what a horrible nurse I would make because I'm too rough! Well I wasn't using a jack hammer to insert the stupid thing (I had to use MY finger). As disgusting as that is it isn't as disgusting as having to debride the nasty wounds on her disgusting feet!


So in all that nonsense I have a question,


How in God's name can a hospice provide NOT think this woman NEEDS to be inpatient SOMEWHERE other than my house? I don't give a tinker's damn what "the patient" says! She has vascular dementia has had her butt powdered her entire life! She is abusive to an adult child, she was abusive to and allowed to be sexually abused as a kid!


When does MY mental and physical health matter? Never mind that, when am I going to be allowed to raise my own child?


Also, obviously I haven't been blunt enough with my sibling and "I need your help with mom," wasn't direct enough. I swear I spoke slowly and used small words! What do I do? If I'm not going to have help, does anyone know if NC USA has a way for caregivers to be paid?


I am scraping by at the moment as my work is taking a back seat to the needs of a person who could've cared less about me as a child.

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I'm reminded of the saying "An emergency on your part does not an emergency on my part make".

I'll second lymie's comment. Mom can "announce" anything she wants. My children used to announce that they wanted ice cream for dinner. It didn't mean they got it. My MIL, and then SIL, spent years waiting on my FIL hand and foot. The end result. A obnoxious, overbearing, pompous man who thinks that the world revolves around him and that everyone should stop what they are doing to do his bidding. Exactly WHY do you have to stop what you are doing to run to the store to pick up what she needs when she needs it. My SIL was conditioned to jump because she didn't want to deal with my FIL's tantrums if she didn't do what he demanded.

He's learning a lot in the SNF - about waiting his turn, about the fact that the world doesn't revolve around him, about the fact that the fact that you catch more flies with honey that vinegar.

The next thing - getting her into a SNF- yes you are never going to get her into one - as long as everything she needs is taken care of. No one ever wants to go to a nursing home. But that doesn't mean that it isn't the best solution for some people. And in your case - you are burning the candle at both ends.

You need help. As others have mentioned - the ER "dump" may be your only option. If you can get her to the hospital - you tell them that she is an "UNSAFE DISCHARGE" - use those exact words. Use them over and over and over until someone listens. You want a social worker. If she is capable of taking care of herself - she can manage to get herself home. Do not take her home. No matter what they say to you - and they will tell you that you HAVE to. You don't. They have a responsibility to assist you in finding care for her if you tell them that you can no longer take care of her at home.

If she is able to take care of herself - she can go home- and that means she doesn't need you to take care of her. That means you are off the hook. But you already know the answer to that. That's your angle. And that's when you tell them that she can't take care of herself and that you can no longer take care of her needs - and you add to that the fact that you are trying to juggle taking care of her and your daughter who has Autism and you can no longer balance the two and that she needs more care than you can support.

You and your daughter both deserve an environment where you can have peace and calm. You don't mention where on the spectrum your daughter falls - but you mention that you homeschool her - I'm not sure if that is simply because you have a preference for homeschool in general - or if you feel that your local schools can't meet her needs. But as a parent of a child (well she's a young adult now) with Autism, I know they need an environment that is conducive to their needs if at all possible. There are other places that your mother can live where she will be well taken care of. Your daughter only has your home and you. And both she and you deserve this time together. Especially if you want to homeschool her - that requires a peaceful, uninterrupted environment as well.

I wish you the best of luck. I know you are between a rock and a hard place. But protecting yourself and your child is paramount. And in the end, it is safest for your mother as well.
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Yes, you need to see an Elder Law attorney.

The next time mom falls, do not pick her up. Call 911. Have her transported to the ER.

Call the ER. Ask for Social Services. Tell them that mom is a danger to herself and others and can no longer reside in her home.

Do not show up at the ER. Do not sign for discharge,

If they send mom home in a cab, she falls again, repeat as often as is needed until they place her.

If she is "independent" and "competent" she doesn't need you to provide her care.

As long as you keep stepping in, no one will place her. Stop catering to her demands. Keep her fed and clean.

Step back from all else.
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Er dump time
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Sorry you are in such a hard situation.

Never ever pick her up. No way. You can hurt yourself and it is NOT worth is. Call 911 and have her evaluated and then mama does not come back home.

You have POA. Is it financial and is it activated? If so, let nursing homes you are dealing with know this. You would then be able to fill out paperwork and sign on her behalf.
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“…Mom announces needs soda cigarettes meds whatever…” First off mom can announce her “needs” doesn’t mean you have to jump rite on it or provide her with everything she asks for. As long as you are keeping up and doing everything everyone demands of you nothing is going to change. The Hospice worker doesn’t see that mom needs to be in a residential facility because you are accomplishing everything they feel needs to be done, mom is their patient not you and she is getting the care she needs. The first thing I would do if I were you is tell them you can’t do whatever it is they instruct you to do. “Things have changed in my life and I don’t have the time and ability to change her dressings everyday now”. Leave her in bed or don’t get to the sheets one day so when they get there they need to do it. “I need to take my daughter to some appointments this week and it may become a regular thing so I can’t have Mom ready for you” or whatever. If this doesn’t move the needle stay hands off and let her fall but don’t pick her up call 911 and if she is saying she’s fine just pick her up, you insist she be taken to the hospital to be checked out. Then refuse to take her home and be responsible for her care, you are unable to do it and sending her home on her own would be an unsafe discharge. It then becomes the hospitals responsibility to find a place for her. You don’t have to wash your hands of her or not participate at all. You are happy to do everything you can to help including acting in her best interest as her POA but you can’t be responsible for her physical care at home. Don’t let anyone convince you that you can or it will be minimal, you can not be responsible for her care in your home. You can not pick her up off the floor.
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You realize that what you're providing is ordinarily provided by a three shift staff, and the word staff means a team of people.

Find a caregiver's support group that meets via Zoom. Jump from one to another until you find one that not only vents (which is great) but is actually a great source of resources. Not only resources but tried and true resources.

In one of your responses, to a response, you mentioned that you don't know where to being. Create a spread sheet indicate in the first column the name and phone number of a hospital, then call and briefly say you need to speak to an advisor regarding desperately needing help in this impossible situation. It could be a social worker. In the second column type out the name of the referral and their direct line. Type in note in another column. However you want to do it.

When you are told "no we don't have anyone here", still ask if they can make a recommendation.

Research everywhere in your county or neighboring counties. Perhaps a church can provide resources.

Go online and hunt your a** off like you and your child's lives depends on it.

You are beyond red flags.

You may be part of the problem. As I read your message it's easy to see you have what it takes to get this resolved. But depression and exhaustion is a huge hurdle. Ask yourself what is really stopping you.

In my case I found that I can't let go of my beloved care recipient even though it's killing me to continue. There's a dash of ego maybe in this stew too. Will I be failing him. I will be a failure. And the money is an issue too.

What helped me make my decision (just this morning) to place my husband in memory care was the realization that at least if I drop dead or even get helplessly sick he will be taken care of. It's a fine place. It's killing me.

I know you situation is different.

Dig deep online, or by word of mouth, a school, and yourself. You'll find the answers and help that you need.
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SnoopyLove Apr 2023
Wise counsel.
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Somehow many caretakers must become more business savvy and not just react to a situation.

You basically signed your life away until she dies with that agreement that she could live in the house you own until she dies.

We do things because we care, however "the what" we do is a business decision, thought through and planned out with our head not our heart. Our hearts are not designed to do the thinking.

You are another who in adulthood tries to do things so your mother will love you. I was trying as well until 12 years ago, then I woke up, haven't spoke to her since and never will.

Now, I didn't go to your extremes, but I did cater to her. I would never have her live with me or live with her, she is an abusive, nasty, ungrateful person, a must miss.

I would go to an attorney and see what your options are to get out of this mess you are in. Me, I would consider selling the house, move her into a home and buy myself a new one, your life then becomes yours again, if you keep doing what you are doing, she may outlive you, happens all the time.

Sending support your way.
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"The local homes say 'mom doesn't have to go if she doesn't want to' yet I have POA"

it seems OP's mother, although she has dementia, is still mentally competent, so OP is not able to force her mother into a facility. OP feels trapped.
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golden23 Apr 2023
I get that. Proper geriatric, psychiatric evaluation may help get mum into a facility.

If mother has a trip to ER, OP can refuse to take her back on the grounds that she no longer can take care of her. Then the hospital has to find a placement,

And OP is asking if she can be paid.

That can only happen if she has a contract with her mum to pay her for her caregiving services.
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It sounds to me that you shouldn't be doing this any longer. Why isn't she in a nursing home where people who get paid to do what you are doing take care of her? I think its time for you to make some changes for your own sanity and your daughter's well being.
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You definitely need a change and less work. Your mother needs to be in a place where professionals can care for her 24/7 and you can visit if you want to. Your daughter and you yourself need more from you than you are presently able to give.

Talk to her doctor about suitable placement as you cannot keep doing this job.

I agree with you -she needs to go into a facility.
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Please, find out if there's volunteer help thru the adult care services in you area. You need a break ASAP. This caregiving job is brutal, I am going same thing with my husband who has lew body dementia. They are so demanding! 😞
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Themaid Apr 2023
I have found the more I try to help, they meaner she gets. But if I'm hands off, she's falling everywhere and I end up picking her up off the floor (as I have my whole life) she was a raging alcoholic my whole life and I've been responsible for her my entire existence. I believe I've reached a point now where I want her to go to a facility.
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WOW. I do not know how you get thru a single day like that, much less a week, month, year, years?? I completely agree w MJ1929. Although I know it comes from a loving, kind, giving heart, I have to respectfully disagree with PeggySue on obligation #3 being your mom. Particularly since your mom abused you.... and continues to. How much is dementia, how much is just who she is and always was? This level of care is waaaaaay beyond reasonable and really needs to be in a skilled care setting. As I'm sure you already have done, you need to really consider the impact this is having on your child to live in this environment, and any other loved ones. It is inevitable that this impacts your energy level dramatically and ability to truly be present and focused on your child. It is not a failing in any way on your part... you are exhausted, being abused and have a misplaced yoke around your neck that you need to take care of your abusive mom just because you share some DNA. I know you've considered many possibilities, but there are state funded Medicaid nursing homes.
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Themaid Apr 2023
Thank you. This is precisely how I feel. Mom was an alcoholic when I was a child and only stopped drinking when she was dx with lung cancer mets to brain. All that resolved minus the white matter disease and now what I have is a bratty teen in the body of a 71 year old.
My daughter is autistic, I am failing her as a mother! She deserves better! I just don't know how to start the process. The local homes say "mom doesn't have to go if she doesn't want to" yet I have a POA! They will not accept just my signature. I feel so trapped
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You aren’t going to change your sister, just yourself.

You have three obligations. Your child, your employment, and your mother in that order. Something will have to give here, and you have seen it.
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I learned when I was providing care for my mom that as long as I did everything my siblings (4 of which were able bodied) would just let me. At some point I think you just stop. At the very least find another hospice provider.

Maybe start sending sis graphic pics of you inserting suppositories into your mom's (you know) No, it probably won't inspire her to do more but you might get some satisfaction out of it.

Nothing is going to change until you make some changes.

You do have my sympathy.
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Previous question included this housing info;

"I thought I was doing the right thing by buying the house and letting her live here with lifetime rights till passing".

Maybe it seemed an ok deal at the time. Fine. But it's clearly not working now.

So what will you do about that?

Nothing? Or something?
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Themaid Apr 2023
I spoke to several NH this week. I've been told "mom must sign as she is *still in there" I'm POA! I think I need an attorney?
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One question - the Big one.
WHY are you providing all this care for your Mom?
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Themaid Apr 2023
White matter disease - arteriosclerosis, lung cancer metastasis to brain (resolved) vasogenic edema, COPD, narrow arteries, stasis ulcers, and lastly poor circulation.
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Nursing home for her. Freedom for you!
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Themaid Apr 2023
That will be the day I run naked from my house down the beach singing "I'm freeeee 🎶 as free as the wind blows"
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Sounds like she needs to be in skilled nursing. Who has the power to make that call?

Is she in your house, or you in hers?

There is absolutely nothing that says you're required to do all this caregiving, so I'm wondering why you are, especially after all the abuse you've tolerated from her all your life.

I think your problems begin and end with you and what you're willing to put up with, plus why you're willingly put your child through such a home life. That's not blaming you, but just an opinion that once you figure out that stuff, then you'll be able to make some concrete decisions that affect you and your daughter in a positive manner.

Rule #1 -- You don't owe your mother anything

Rule #2 -- You DO owe your daughter a safe, peaceful home to grow up in. She can't even escape during the school day, so that even compounds the misery.

Rule #3 -- You have a right to be respected and to make your own choices about how you live your life with your daughter. Mom's presence in that life is not required just because she has a pulse.
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Yesterday. That’s when your mental and physical health began to matter, but you were too busy to notice. See now.

I found info on NC caregivers getting paid but then thought it would be more appropriate to point you to inpatient hospice. Is  Gainesville, Palatka, Lake City or Orange Park near you? There are inpatient hospice centers run by a company called Haven.

Who has POA/guardianship for Mom?

Clearly your life is NOT a beach : > / But it CAN get better. Keeping in mind that sometimes the best way to care for a family member is to put them in the hands of professionals, what is hospice doing to address your needs? Is respite care available? Nursing homes nearby?
If you haven’t already, talk to Adult Services under Brunswick County Social Services at (910) 253-2250. Their website says they offer “many programs that can assist seniors or caretakers of seniors, including assistance with placement in a rest home or skilled nursing facility, assistance with placement in an adult day facility, and monitoring of adult homes.
BSRI: Brunswick Senior Resources, Inc., is a registered 501(c)3 non-profit that operates senior centers, coordinates the Meals on Wheels program, assists with in-home aide services, and offers numerous other programs to seniors, their family members and caregivers.”

The more care you bring in (or can send Mom out to), the more your life is yours to get help to heal your wounds and be with your daughter.

I hope you will find breathing space soon.
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OMG, Themaid, I am so sorry. What a nightmare. I’m amazed you’ve lasted through 6 years of this horrible situation.

“She is abusive to an adult child, she was abusive to and allowed to be sexually abused as a kid!”

I am so sorry. 😞

I have to say, I don’t think you or your sister should be doing hands-on caregiving for this abusive individual. And her needs and behaviors are too much even if she was or had been a kind parent.

What’s your housing situation? Could you and your child get your own place?
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