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I’ve gotten over the guilt from family members & now while trying to find a long term care facility for mom, healthcare professionals are not talking that with me, pushing me for in home care or a daycare center Monday-Friday. They all say, the goal is to keep her out of LTC! Excuse me, do you put up with what I put up with daily? The nastiness, selfishness & ungratefulness? I don’t think so!!! Mom puts on s good act meeting with them & let’s lose on me while driving her home!!! Again, here we are with people that don’t understand nor really care. Thanks for letting me vent!!!

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Lostinva,

Wow! You have got to be exhausted! I know about going to church separately. We do that too.

My mom will be 94 this November. I will be 64 this October but I feel like I am 104 at times! Hahaha.

My mom just finished doing rehab. It definitely helps if they are willing to do the work and mom did it. Proud of her for that. She’s more agreeable with others than me.

I hope you are able to put all of this behind you soon. Hang in there. Thinking about you and many hugs!
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Lostinva Aug 2019
NeedHelpWithMom, thankyou so much for the encouragement. I’m praying the Dr understands what we deal with on a daily basis & gets past just ordering home health!!! We will see. I’m hoping rehab will help my mom too! Glad your is doing better
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How are things going, Lostinva? I hope things start to move forward in the right direction soon.
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Lostinva Aug 2019
To NeedHelpWithMom,
Thanks for asking. I had another post about her being in hospital for CHF, don’t know if you saw it. Anyway, I talked Rehab with Social Services & that goal was to transfer to LTC after. The facility that we’ve wanted all along accepted her but the hospital dropped the ball & told Humana we were wanting LTC which I already know they won’t pay for. She has Medicaid for that. So she’s home, can barely walk, spends most time in bed. I called her Dr, told him I wanted rehab/placement at facility of choice. He called the facility, he is doing a face to face with Mom next Tuesday. Praying for a solution & for him not to just sit & smile at her, try to change our mind like other healthcare professionals but realize what we are going through with her. My husband & I now have to go separately to church, errands because she threatens to “go for a walk”. Even though she’s weak, I know she will try & then end up falling like last time. I’ll update after Tuesday’s appt.
How are you doing??
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My RN daughter worked as a ‘private bed finder’ for people who had private health insurance and needed hospital care. For older people who also had chronic problems, many private hospitals would not accept them because of the difficulty of getting them to leave at the end. No wonder public hospitals put on so much pressure for you to take them home. You need to be as tough as they need to be.
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I am so sorry Lostinva,

I am in your shoes. I have been caring for my mom since 2005. I love her very much but it certainly isn’t easy.

You are right. No one knows what it is like until they have walked in our shoes of doing the daily grind. It isn’t possible for everyone to take on this responsibility.

Recently, I called my cousins to chat and receive some support from them concerning my mom.

As most on this site know, my mom has Parkinson’s and her brother, my Uncle Eddie had it too. He spent the last few years of his life in a NH. His children had NO CHOICE in the matter. This is why, My aunt died in 1998 with cancer, leaving Uncle Eddie alone. He has 5 children. Two of them offered for him to move in with them. HE REFUSED! Saying that he wanted to be in his own house.

Well, he had a big two story with a basement. He couldn’t go up and down the stairs anymore. He was living in the basement that didn’t have everything he needed. It was basically a bedroom, laundry area and a toilet.

He developed a UTI and it went into sepsis. That was the deciding factor to placing him in a home.

He wasn’t cooperating with the family and wasn’t taking good care of himself. He was dehydrated, not eating properly. Plain and simple, for him it wasn’t a good idea to be alone at his house even if that was his desire to do so.

His daughter suggested him moving into an assisted living facility since he refused living with them.

He refused living with his daughters as well living at an assisted living facility and told his daughter that he wanted a private nurse 24/7!

Do you know what my cousin told him? “Dad, that is a NH. I will find a place for you to live.” She did. It took her awhile to find the best fit and she visited as often as she could.

She and the sister who offered to take their dad in work full time. So they would have needed sitters to help.

Their younger sister who lives in a different state criticized them for putting him in a NH to which she was told, she wasn’t helping care for dad and had no right to criticize because she never saw him!

Their two brothers, one is distant, the other helped once in awhile.

Sometimes, there is no alternative but to place parents/family members/spouse in a nursing home.

You already know others will act as if they know what us best for your situation. They don’t.

Yes, it is frustrating but you don’t sound like a pushover to me. It will take a little while but with some research you are going to figure this out.

I wish all the best for you. Don’t despair or give up. Keep plugging away. At some point someone will listen to you.
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Lostinva Aug 2019
Thank you for your reply! I complained to the director of the senior center & she had “ a talk” with staff. I’ve seen a change of attitude from a couple of them. Almost had mom set as she was in the hospital last week with CHF. Rehab/LTC accepted her but her Medicare supplement denied rehab. No attainable goals due to her age & mobility. Duh!!!!! I’ll keep on keeping on, thanks for the encouragement!!!
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If insurance isn't flipping the bill for full time home care or daycare, then who is?
Can you do it? 24 hour care can put a lil damper into the savings,retirement, life...
day care, is a couple hours maybe everyday or every other day... who pays for that?

Daycare may just come up to you one day, and say, hey your mom is not benefitting anything from being here, and she is more of distraction, and nobody can really watch her for 4 hours straight, we suggest you try something else...

Family Members want to pitch in their 2 cents? Let them, drop mom off and let them be the Daycare a few days a week or everyday. Ok, I am not doing a good job, let's deliver mom to your front door, and you take care of her one month, and I will take care of her the next mom, then let aunt take care of her for a month, and then let's drop mom off at uncle house for a month, and then let's take mom to live with child #2, for a month....or whoever is complaining.

Tell them, WALK IN MY SHOES FOR A MONTH,YOU TAKE CARE OF MOM, then come back and talk to me afterwards. See what happens...

My friend retired just in time to take care of her mom, then a few years later, her sister retired :) Yeah.. You are retired too!! Sister, start looking for a place for mom in your neck of the woods, It's your turn to take care of mom !! They moved mom up next to sis, and they found a wonderful place, and my friend would go up there every other month and visit and see mom and sister. It turned out great.

It's easy to place criticism if you haven't done it. Let them try and see how long they last....
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Isn't this fun?
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Lostinva Aug 2019
Oh yeah, tears daily but not tears of laughter for sure!!! I take it you’re having fun too???
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Sweetie, don't worry what other people are thinking. This is a very tough situation to be in, but it works both ways. Some mothers are loving & the children throw them away & abandon them or rob them blind. If your family isn't supportive, they are NOT worth it. Tough to swallow I know, because my children threw me out in the trash!! You can always vent to me anytime I'm on line!!
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Lostinva Jul 2019
Thank you, I’ll remember that!
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Unfortunately this is all too common and will likely get worse as baby boomers are entering the system. The government advocates for keeping them at home and out of LTC for as long as possible because there just are not enough places and beds to meet the demand. The problem is also not enough home care workers that are adequately trained in caring for those with dementia. And the caregiver is the one that takes the brunt of it all.
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Angelika1947 Jul 2019
The thing to do is keep them out of nursing homes & in their own homes. To do the best to keep them going. With the right care, you may luck out & keep them home for their entire life. To lose your freedom, the life you knew & your way of life you knew is enough to put you into a state of depression. We need a better way of doing things & treat. The leaky gut can cause big time trouble & some depression that it hidden the same thing. Health is changing rapidly & cancer is cured.
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I believe that recently, to preserve medicaid programs, gov't has required changes to eligibility (& 'caps' on payments 2 providers). It's targeting eldercare out of necessity, & this liknk explains why:

https://www.nytimes.com/2017/06/24/science/medicaid-cutbacks-elderly-nursing-homes.html.

"While most Medicaid enrollees are children, pregnant women and nonelderly adults, long-term services such as nursing homes account for 42 percent of all Medicaid spending — even though only 6 percent of Medicaid enrollees use them".
It's the perfect storm of elders living so long, while being the sickest & most expensive.
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The goal is NOT to keep mother out of LTC, especially since she's approved for Medicaid. The true goal, dear woman, is to preserve YOUR sanity and quality of life while providing qualified care for your mother in a facility that will provide 3 hot meals a day for her, along with activities and other seniors to shoot the breeze with. Your mother is a Queen of Showtiming......acts like a lovely-fabulous-coherent-non-complaining-happy-go-lucky-charming-little old lady to OTHERS and a bat-shit crazy, chronically miserable complaining and selfish, ungrateful burden to YOU. You can talk to the doctors about this till you're blue in the face but they won't hear you......YOU will be the bad guy, that's YOUR job, the role mother assigned you so she could play the good guy. I know from where I speak, believe me. I've been The Bad Guy to my mother's Showtiming BS antics for YEARS now. And it's only recently that others have started seeing her true colors....the mask falls off eventually, and you'll say I Told You So, but at what cost? Take AlvaDeers sound advice about REFUSING to take her back into your home, period. It's time for somebody ELSE to put up with what you've been putting up with for way too long now. You deserve a life of your own where you can be an occasional visitor instead of a daily victim.
Best of luck
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Lostinva Jul 2019
Thank you! You hit the nail on the head, that’s exactly how she acts!! Every time my daughter or granddaughter visit, which was today, she starts whining to them, “I don't know why your Mom/Gma hates me so much! Pity party to the max. I don’t hate my mother, I just don’t like her, stems from 60 years ago when I realized how she felt about me!!!
Back tomorrow visiting LTC facilities, I will speak out this time, I have to. Thanks again for the encouragement.
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Please, tell everyone, anyone, the realities of how she acts.  Don't cover up.
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CarlaCB mentions how quickly they get our elders out of hospitals when they enter. Hospitals are paid by medicare on what is called DRG. That is to say that someone entering with, say, pneumonia, gets so many days paid. After that the hospital starts to lose money. But if they get the patient out earlier they make money. The assignment of a DRG is ridiculous because of course me with pneumonia, otherwise healthy can recover faster than a 90 year old with other debility. Moreover, if the hospital can keep you in the ER or Urgent Care you are not considered admitted and that is a money saver for them as well. Complicated but real. A hospital is dinged by the government for an early readmit. So if your elder sent home in two days and returns within a certain amount of time it is considered that the Hospital likely discharged before patient was ready. To avoid that they try to treat in ERs. This is becoming worse and worse. Just had a friend with burst appendix and abdomen full of what pours in when it bursts. They sent home after only two days on IV antibiotics, open incision and packed dressing changes. Had to be readmitted with pockets of infection but they would not readmit her and kept pouring in antibiotics by IV in the ER over the course of just under 24 hours. It is getting very bad out there. Our medical care certainly cannot be considered the best in the world at this point. Likely not the worst, either, but certainly not the best.
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anonymous828521 Jul 2019
Very accurate, & it's understandable really. There's only so much money to pay for the increasing #of people who depend on medicare & medicaid. (The gov'ts try to avoid raising taxes on the workers) so 'entitlements' are all being trimmed. Some states require family to contribute to their parent's long term care (& that's likely to be the new normal).
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I did take care of my Mom and she was an easy care but I just wasn't a caregiver. I didn't like being "on" all the time. Just as I would sit down to read or watch TV, she would holler she was going to the bathroom, which she needed help with. She would get up in the middle of the night thinking it was daytime. It was like having a baby again. I don't do well being woke up from a dead sleep. Then there were her paranoid times. I couldn't handle the accusations she flung at me. The one person who had been there for her. My brothers couldn't even bother with a weekly call. She had been a good Mom. She was Mom to all our friends. But no calls, no making the yearly visit from NC so she saw the kids. I placed her in an AL. My house was a split so she couldn't roam. The AL was shaped in a square. Every so often in the halls, would be chairs. A nook with books. So Mom would walk around, sit for a while and walk. Used to fiind her shoes all over. Loved not having to be "on" all the time.

Now my MIL. TG the decision never had to be made where she was going. Yes, she came across the sweet little lady to everyone but her DILs. Even now my husbands cousin will say how sweet she was. Yes, as long as you did what she wanted u too. When she didn't get her own way, she got nasty. I think her boys just let her have her way. It was easier. Then they just did what they wanted. My DH new how to handle her. So did my SIL who had been the "girl next door". My other SIL fought her tooth and nail. MIL was not going to rule her roost. That was my SILs job. Me, we had one big blow up and my DH stood by me. I was always respectful and nice. We had some nice times but I had seen the nasty side.

You need to tell these people what Mom does behind closed doors. Take a witness. Stick by your guns. Tell them mentally and physically you can no longer take care of her. She needs a placement. Like said, get a generic doctor who knows what goes on with the elderly. Does Mom have money. Get the doctors order for 24/7 care and start looking for a nice LTC. If no money, apply for Medicaid. They give u 90 days to spend down any money she has. There is paperwork u need to provide. U need to find a bed for her within that time. Placing my Mom went easily thanks to the people at the LTC facility. Mom paid two months privately and transitioned right into Medicaid. If u can afford a lawyer, Medicaid allows you to use Moms money, it does make things run smoother. There's someone else who can help u make the right decisions. Its just that it cost 5K to retain one the both times I needed one. TG not out of my pocket.

When I was young, I used to cry when I got mad. Now, I get mad. Maybe you need to get really mad or cry. "I can't do this anymore".
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Lostinva Jul 2019
JoAnn29, our stories are so alike except I’m dealing just with a mom & also a brother that calls maybe once a week.
my mom has Medicaid, looking for placement. Just frustrating that if I don’t find placement in 2 wks or place her in a M-F daycare program she loses her Medicaid status. They push & push this daycare &/or home care. How do I get people to really understand what the daily struggle is!!! We left a mtg Friday for the daycare & Mom was her pretend sweet stuff & tore into me while getting her in the car!!!! Ugh!!!! I’m seeing my Dr next week, I’m hoping he’ll listen & help me with Mon’s placement.
I’m mad & I cry a lot & can’t mentally or physically do it anymore!
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Yes, this is what medical personnel does, and I try to explain that over and over again. You must get your elder INTO hospital in order to get the Social Worker there engaged in finding placement, because she/he can do in 10 minutes what you cannot do in 6 months. HOWEVER, I always warn people they will attempt to guilt you to take them home. They will promise you things (that will NEVER happen). They will tell you "We will make this work. We will get you help into the home". Later you will find out the cost is prohibitive, the time they give you is inadequate and etc. They will insist the elder goes HOME and then you can work on placement. Etc. So there is only one way to handle them, and sorry, this is universal. You must STAND STRONG. You must say simply this, and then it is not for further argument or discussion; you must say "I WILL NOT be taking him/her home. I CANNOT now do this anymore, physically or mentally. Sending her/him home now constitutes a threat to his/her care, because I cannot and will not do it anymore. " If they start on the same old litany of "We will make this work" just say "If you send him/her home to me I will not let him/her into the door. PERIOD!" It is only when you are shrieking and broken in some instances that they will understand they now have to get to work on placement. This is WHAT THEY DO. They aren't doing it only to you. They are doing it to everyone. And yes, they want you to continue to do the care that you can no longer do. I spent my lifetime as a nurse. I saw more broken desperate families than you can ever begin to imagine. My heart goes out to you.
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CarlaCB Jul 2019
Thank you for sharing this perspective, AlvaDeer. I have seen this happen in my own family but didn't realize it happens everywhere, to everyone.

I've also noticed that, at least in my area, hospitals seem desperate to get patients out from almost the moment they come in. Within hours of admission, someone will be stopping by to discuss the "discharge plan". Before any diagnosis, even. Before any plan of care, you're supposed to formulate a discharge plan. Oh, and if not ambulatory, they want to start physical therapy, to get you on your feet again, before they even figure out what's wrong with you. Jeez!!!!
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My mother is like yours, she should have been on the stage...a real Sarah Heartburn! Do what you know is best for both of you, no reason to feel guilty.
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Thank you all for your input, I appreciate your understanding. I have explained to them that mom is unhappy at my home, she tells me nearly everyday that she doesn’t want to be here but I don’t tell them about how she treats everyone. Maybe I should!!!!
in response to one of you, you’re right about the Dr she would need. Our internist thinks Mom is the next best thing to chocolate because she puts on quite an act for him. I just shake my head, she has him fooled too.
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rocketjcat Jul 2019
Why wouldn’t you tell them how she treats everyone and her nastiness? Behavior problems are as much part of her symptoms as telling them she has arthritis or a cold. Definitely record her attacks on you to be able to play for the doctors.
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Lostinva, if your Mom isn't seeing geriatric doctors, it might be time to search them out. Believe me, they are far more understanding then non-geriatic doctors.

My parents had a primary geriatric doctor, and without asking me about my time frame, she knew right away how difficult it can be for a grown child to be a caregiver. She would schedule testing right then and there so I wouldn't need to take time off from work just to come back to the office.

And when I was in the exam room with my parents, whenever she would ask Mom or Dad a question, she would glace over at me to see if I was shaking my head "yes" or "no". Anything questionable, she would rephrase the question so my parents would have a better understanding.

Healthcare people need to understand that we, the grown child, are not professional caregivers. It's like going on a job interview with zero experience.
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Lostinva - I recommend you record your mom every time she attacks you verbally. Yes, those are attacks. Play back those recordings to any relative or healthcare professional who tries to guilt you into taking her back. All they see is a nice little old lady and her daughter (I'm guessing you're a woman, please correct if I'm wrong) who doesn't want to take care of her mother.

The people who said 'the goal', well, it's their goal, not yours. You have a different goal. You're trying to have your mom taken care of by the professional because you can no longer do it. Go and reclaim your life.

When someone lays guilt on you, throw it back at them. Tell them to mind their own life, and that they don't know the stress you have because they don't walk in your shoes.
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I have to shake my head at people who use phrases like "The goal is...." What the h@ll does that mean? Whose goal would that be? Can there be more than one goal, or can the goal appear different from different perspectives?

What they mean is "The best thing for Mom is be cared for at home." That's honest. Maybe that would be best for Mom. But Mom isn't the only one involved here. If Mom can stay at home without hijacking anybody else's life, that's one thing. But by the time these conversations start happening, that generally is not the case. Some major sacrifice by somebody else is required, even if Mom is a perfect angel. Which it sounds like your Mom is not.

Unfortunately, you need to push back against people who try to guilt you into sacrificing your own well-being for Mom's. She will adjust to life in a care facility. She'll get better care and more attention there. And you can get back to enjoying your own life.
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Have you straight out told them that no, the goal isn't to keep her out of LTC, the goal is to figure out the next step because you. are. done.
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