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I fear I will answer my own question by then end of typing this. Mum has had multiple problems before the most recent event which was a broken hip caused by a fall. She had partial hip replacement 3-4 weeks ago, and is supposed to be doing physical therapy. There are 3 siblings total, 2 of whom (me included) live a state away from Mum and our brother. Brother has taken the caretaker roll and does a splendid job juggling Mum's finances, living arrangements (she lives in an independent apartment in a retirement facility), medical care, etc. Before the broken hip incident, Mum was barely surviving in her apartment. Clearly, she belonged in Assisted Living, not Independent Living. She sits on her couch all day long, and recently was found to have dirty depends, toilet paper, and assorted trash surrounding her, so she was no longer getting up to even use the toilet. In the past 4 months, she has had to use her life alert 6 times. 3 of those times she soiled herself. The staff is not equipped to, nor expected to, help with those sorts of things, but brother's reaction is to complain about how stupid the staff is. In my view, it is a beautifully maintained place, with friendly residents and caring staff. Mum alone decided to isolate herself, does not leave her apartment, all meals delivered to her (during COVID this is norm, but before that she declined to go to the dining room as well). Friendly women neighbors have been rebuffed by Mum. Brother takes care of her every need, but he has his own family and works full time, so time with Mum is limited. Still, he was visiting her daily, cleaning up after her, bringing food (because of course she hates the food there), shopping, even helping her shower, etc.


So flash forward to now, she did great after surgery, in the hospital at first she was getting up and taking steps, then the minute she was sent to rehab she began "falling asleep" or keeping her eyes closed during therapy. She would tell the therapist she was too tired, so they couldn't continue. By the second day, the staff was using a crane-type apparatus and up to 3 people to move her out of bed to toilet. Brother (and us siblings) were racking our brains and busting the internet trying to figure out what was wrong with her- medication? dementia? Brother blamed the rehab facility claiming all nurses, PTs and doctors were either incompetent or lying on her chart to "kill her", so he took her home against doctor's orders. He claimed he could take better care of her himself, planned to stay at her place for a week -7 days 24/7- to motivate her to get on the toilet, eat properly, monitor her meds, and thus for her to be able to "get back to normal". I, on the other hand, am seeing all too clearly that Mum herself is not doing anything to facilitate her "recovery". She seems perfectly happy to have my brother change her soiled diaper (she won't even get up to tip on the commode near her couch- even with help). Now she is showing symptoms of dementia- forgetting where she is, who we are, thinking Daddy is still alive. God forgive me, but I'm just not buying it.


Why does the dementia occur sporadically? And why now, nearly 4 weeks post surgery, is it suddenly manifesting itself? She's closed her eyes, and "sleeping" 20 hours a day. I speak to her on the phone every day and when I ask how she's doing, she says "everything hurts". When I ask what, she can't define. Brother is insisting we all come and help because after 24 hours he can't "do this". I was against removing her from rehab in the first place and told him so at the time. Am I cruel? I feel I can't tell him that, he'll go ballistic. So I try to be as supportive as I can over the phone. I don't want to leave my family (I have a disabled daughter and would have to make care arrangements for her). I can't support what I believe is his enabling behavior and Mum's typical behavior. But when I say this out loud to myself, it sounds cruel, or that I don't love my Mum. I do love her.

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I don't think that you have to do a "I told you so." But you can absolutely tell him that you can not leave your family indefinitely to prop mom up.

He made this choice and he can not make your choices, no matter how belligerent he gets. You can very calmly tell him that you all coming is not the solution that is best for mom, because it has to work for everyone involved or it doesn't work. You can help screen assisted living facilities if hers is not a continuing care facility. You can set up a needs assessment to ensure that you are looking for the level of care she needs. I would tell him as soon as he gets ugly that you will not talk to him until he can behave civilly, then tell him to call you when he has calmed down. Do this every single time, you are not his scratching post or dumping ground. Once you tell him that you will not talk to him until he calms down, hang up. Every time, he will get it or leave you alone.

Being verbally abusive to manipulate you all has apparently worked for him in the past, so you have to teach him how to treat you now.

You all need to get educated on dementia. Your mom is probably going down that path and the behavior you think is games is most likely loss of executive function and yes it comes and goes and at times you wonder if it is really you losing your mind. I mean what mom would really want her son to deal with her personal hygiene? Her brain is broken, either from dementia or something else, but that means that she requires professional care. You need to protect yourself and your daughter that needs you from being sucked into a no win situation. Doesn't matter what your angry brother wants, he doesn't get to say for you and he doesn't get to shred you, unless you allow it.

Remember, NO! is a complete sentence and you are a grown woman that doesn't need to justify her decision to anyone, especially her brother.
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SoCalPoppy Jun 2020
Thank you!! This is so empowering, and Yes I can just say No.
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Anesthesia is very hard on the elderly brain. It sounds as though mom had some cognitive issues BEFORE the surgery and the anesthesia exacerbated those issues.

I don't think she's faking anything. I think she is likely in pain (dementia patients are notoriously bad at localizing pain).

Your brother made a decision that has consequences. "What is your plan for dealing with that?" might be a good way to respond to his complaints. "I cant possibly do that" and "You need to get professional advice about the best path forward" are other good phrases.

Don't jump in with a plan, which he will reject. Has brother spoken to mom's doctor about her symptoms?
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SoCalPoppy Jun 2020
Thanks, Barb. I would much rather believe what she's telling us is real. I do love my mother and want whats best for her in the end. I just think my brother thinks he's the only one who cares about her by over estimating her abilities in order to keep her out of a nursing home. I just don;t agree that is the way to go. Unless we take all her finances to hire 24/7 nurses to watch her and take care of her at home. But financially, that is just not going to last very long. On the other hand, being alone, and another fall could really do her in, and badly.
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First off, if your mom wasn't making progress in rehab, Medicare would stop paying for her stay & they'd ask her to leave. Or, to stay in their long term care section of the facility, because she obviously was in no shape to go home to independent living, with help or not! It's outrageous that your brother checked her out of rehab to begin with, but again, she may have stopped qualifying for rehab sooner rather than later ANYWAY.

According to your profile, mom is 54.........which is awfully young to be experiencing dementia, frankly. Or any of this odd behavior. She needs a psych evaluation, I think. Don't you? Either something is very wrong with her physically that's gone undetected, or there is something going on mentally that is yet to be evaluated. Sometimes after a hospitalization, a person can get 'hospital delirium' and I've seen it with both my folks. My mother was seeing mice running on the floor in rehab, in fact. But she was 92 at the time and diagnosed with dementia.

Your mother obviously cannot live in Independent Living if she's unwilling to move or do anything to help herself. Your brother is rightfully frustrated by this behavior because he can't care for her 24/7..........so what's he to do? Sometimes fear masquerades as anger and he may blow up at you.........frustrated and unsure as to WHAT he should do!!!

You're not sounding 'cruel' here at all......you are just reaching out, trying to figure out what's going on with your mom and why, all of a sudden, she's acting so strange. Get a hold of her doctor right away & let him or her know what's happening. That you are seeking guidance because you just don't know WHAT to do!! I really hate to think she needs a Skilled Nursing Facility at 54 years old.........ugh.

Wishing you the best of luck finding an answer here. Sending you a hug and a prayer, too.
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SoCalPoppy Jun 2020
So sorry to misrepresent wasn't my intention, but Mum is 81. I didn't want to put our real birthdays I don't like putting that kind of info "out there". Brother and us siblings are in our early 60s. Thank you, your reply is spot on.
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Whatever you do avoid the facility out on lake mead pkwy out towards the lake, it is a hell hole and she will not get any care there. I don't remember the name but your brother will know what facility I mean. My stepdad almost died from lack of care in this place. It has many lawsuits against it for terrible care.

I don't think that she will be able to stay in Henderson, they don't have any other ltc facilities that I know of. This may have changed in the last 8 years.

Check out a place on warm springs and eastern, I am sorry I don't remember the name but my granny got the best care imaginable in this facility and I wouldn't hesitate to place another loved one there. It is a beautiful facility that has caring staff.

Good job standing your ground with your brother. I pray that you find the best care for your mom.
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SoCalPoppy Jul 2020
Thank you!! We did see and nix the place on Lake Mead Pkwy!
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I'm so glad that someone figured out she was ill!
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Between the anesthesia, any meds they may have prescribed for pain, the pain itself, and ongoing issues, the sudden sharp decline is actually not unusual. Often along with all the other issues, the pain meds can cause horrible constipation, which makes using the toilet very painful. In her mind, she may be avoiding using the commode because of that. She needs to go back to the hospital for a full evaluation, including medication, digestion and urinary tract issues. Once you have that information, you can move forward. Would it be possible for the entire family to pool funds and get a home health aid to give brother some time off? Often the agency will come do an evaluation and tell you how much care Mom needs and whether they can handle it.
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Maybe your Mum is experiencing UTI. This can cause all kinds of symptoms. When is her post surgery recheck? At that appointment these issues could be brought up and see if tests can be run.
I agree that because your brother took it upon himself to bring her to his home, then he needs to suck it up or find her safe living conditions. Do not feel guilty you aren't there. She was in a living situation where people were available and meals provided. Sounds like she and brother have some manipulative behavior.
Keep standing your ground!
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Has anybody checked out mother's heart and brain?
What medical involvement is there now that she's at brother's house?

It sounds as if things were going south for quite some time before the hip fracture - and, indeed, very often the fracture happens because of the other problems, rather than the other way about.

Actually, you know what. I may be living in a rose-tinted dream world here, but in that dream your brother would come here to the forum and have a good vent about what *he's* experiencing to us. It's just possible we could get him to calm down for long enough to think straight.

:) - the "crane-type apparatus" is usually called a hoist!

Your mother's not putting this on, you know. She probably doesn't have the energy to keep her eyelids open for more than a few minutes at a time. Go easy on her.
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My answer will be short and LISTEN: I was “Brother” for many years (actually a sister with 2 brothers who did next to nothing). One person cannot do it all! Either help the sibling stuck with the job, or shut up. You have no idea what Brother is stuck with. It’s an ongoing nightmare. Take some of it on and give Bro a badly needed break. Or help him find the help he needs. Not no bitching at the caregiver!!
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FamilyNeeded Jun 2020
I agree 100%.
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As for brother, care, etc:

"He claimed he could take better care of her himself ... to motivate her to get on the toilet, eat properly, monitor her meds, and thus for her to be able to "get back to normal"."
 Again, a pig-headed know-it-all, sounds just like my OB was. Clueless. I could write a book about him and you might think it was your brother!

"Brother is insisting we all come and help because after 24 hours he can't "do this"."
 Well, he should have thought about that before taking this on. HIS idea, and he thinks it is okay to force you to comply? Especially after you advised against it? Nope.

"I was against removing her from rehab in the first place and told him so at the time. Am I cruel?"
 Cruel? No. Sensible? Yes. He already disparaged everyone else, and most likely you and your other sibling were among those who were stupid and clueless! I got this! Sure you do bro.

"I can't support what I believe is his enabling behavior and Mum's typical behavior. But when I say this out loud to myself, it sounds cruel, or that I don't love my Mum. I do love her."
 Obviously you want what is right for your mother and her care, and he isn't it. Since he is working and you two are not local, home care isn't going to work. Not unless she has a bottomless pit of money, and even then there are issues with that (no shows, those who don't provide the best care, etc.)

If your mother is still in the hospital, I would ensure she is tested for UTI (culture is best, not just the dip stick.) IF getting the renal issue treated helps her and she bounces back some, I would recommend either AL or MC. In-home care is VERY expensive and not always the right answer. It still requires oversight and a lot of work to manage. When considering this, people don't realize how expensive it is AND don't add in the cost of maintaining the home to the care expenses, which makes it even MORE expensive than a facility. Never mind the stress it adds to everyone! NH should be considered only if the renal issue isn't resolved (aka she'll need dialysis all the time going forward.) There are many nice AL or MC places that could be considered. YOUR time could be used to seek out these places while working with docs and bro to determine mom's best outlook. Choosing a place is totally dependent on how the kidney issue resolves. You can be amenable to working with him to find the best solution, but stand your ground on not providing in-home care.

Just because your brother is dead set against any facility care doesn't mean you have to buy into it. Clearly this isn't a time for "I told you so." There really isn't a good time for that. You can think it and relate to it here, but obviously not with him. ANY criticism or pointing out the obvious won't be well received, so just try to avoid that.

If/when discussing mom and her future care he starts his ranting, cut him off with telling him to stick to the issue, not the blame game. Indicate you want to work on what's best for mom, but can't if he remains close-minded and/or critical and demanding. She was living in a facility and he was able to "manage" everything for her, so WHY is it not a good idea to find a better fit facility and go back to "managing" and visiting??

"I think if she makes it though brother realizes she needs to be in full time care."
 One can hope... As noted above, it will all depend on how this resolves. IF it was related to UTI and subsequent kidney infection, she may bounce back some. Given all her issues prior to this, IL is likely NOT the place for her. Stay on top of the medical issues, ensure she is tested for UTI and treated. If she bounces back some, you could try AL with some in place PT/OT to get her mobile again. MC should be considered as well - staff at a good AL facility which also has MC can assess her for that decision. If she doesn't really bounce back, or the dialysis will need to continue, then more likely she'd need to be in a NH.
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JennaRose Jun 2020
Disgusted, I suggest you scroll down to the bottom of this thread as SoCalPoppy's Mom's symptoms have been diagnosed. Her Mom is now on dialysis for early stage renal failure.

Jenna
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