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.
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?
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.
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.
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.
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.
Following on from that it sounds as though it has to be your brother's choice. She will never settle to what is on offer if he keeps pandering to her, and she is clearly manipulative to get what she wants. It is hard to watch what he is doing but the answer lies in him - he needs to stop and let the facility deal with it - ALL of it, eating, soiling, mental deterioration whatever. He needs to be in discussion with them on what he can usefully do but by doing too much he makes their lives harder because she never gets into the facility routine - they will not be just ignoring her, she is behaving as she feels a need to to get your brother waiting on her and she will continue to do so. Perhaps he could tell her he is going to be away for a month and have a break from going to see her - see if it will break the cycle.
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!
I have seen great neglect and abuse in nursing homes. It is disgusting! Family must step up.
Also, please do not be so certain that everyone could or should be cared for in their own home or that of a family member. Such wide-sweeping statements make it much more difficult for those who have no good choices and must choose what is possible rather than what might be optimal in other circumstances.
Those of us who come to this forum are normal human beings with needs, doubts, and difficult situations. Above all else we need the kindness that we may lack in our day-to-day lives.
The sad truth is that you are likely looking at end of life. Hospice may be the best help you can get at this time, and palliative care might be something that the POA for Health care and the family discuss, then discuss with Mom's MD. You do not mention an age here, but whatever the age, nothing here is going well, and there may actually not be "an answer", other than the aging process and the end of life process. Hospice today is not so much the "six months" of life left rule. It is more the extra help when you recognize that there is no cure for the aging process.
Consider evaluation, or suggestion of hospice evaluation stressing "extra help" rather than "end of life".
OP stated to lealonnie that mother is much older than 54.
Although there is some truth in it, it is wrong on so many levels. First, there is a place for skilled assistance. You wouldn't insist on setting and splinting a family member's broken arm, would you? In so many cases the best physical care for a family member may lie with skilled professionals. In so many cases the best of poor choices may be to let the physical care of our elders be the pros.
This leaves the children to care for their emotional care which is difficult enough at times. By the time our parents need care we are often getting on in years ourselves. The only way that you will have the energy to give your mother the emotional support that she needs is if you are well-rested and healthy yourself. As others have pointed out, tell your brother no and stick to it.
Do visit your mother, wherever she is, and phone her. When she becomes difficult, leave or hang up. My sisters and I do this with my mother. At first we thought she would learn to mind her tongue to make the visits longer, but that didn't happen. It seems she simply has an overwhelming need to indulge in whining and complaining. There is no point trying to change her behavior, it is not going to happen. But there is also no point in hanging around for the verbal abuse. At first it was a bit difficult, but after years practice it leaves us a peaceful place of caring for Mom without being destroyed by her bouts of negativity.
I hope you can find a similar peaceful place. The most important part of caring for a family member is just that: caring, not physical custodianship.
I care for two parents nearly in their 90s and still living independently. I have also been on the receiving end of negativity from one sibling but support from two siblings who live further away. If you don’t agree with your brothers approach that is ok but that doesn’t give a sibling the license to back off helping.
I believe instead that no sibling has the licence to insist, assume, or demand caregiving from any other sibling. Help must be freely given or it will breed resentment & damage relationships.
8 mo. ago my Mom broke her hip and ended up in rehab. Due to the anesthesia, the dementia confusion was much worse for 6-8 weeks. Fortunately she rebounded to her pre surgery level.
My step mom has dementia and sleeps 18-20 every day. My 87 yr. old father is her caregiver....3,000 miles away from all the adult children. A situation that could implode on any given day.
And now my MIL....in the same town as me and my husband. Progressing Dementia, recent stroke and now heading to rehab. The sister in laws have been her primary caregivers for several months now. They expected my husband to do shifts & help with toileting. My husband isn’t able to handle that in any way, so they expected me to do it. They are absolutely hateful to my husband and me. Have been for years. Naturally, I don’t feel like doing these 2 sisters any favors. If my MIL lack $$, that would be a different story. She has plenty of $$ and can afford a lovely facility w/ services. She just hasn’t wanted to leave her home. Now that she’s heading to rehab, it will be a different story. I get it the SIL’s are emotionally worn out. I support their desire for their mother to move into a memory care facility.
I think it’s amazing that your brother was willing to care for your mother’s toilet needs. Not many sons will and for obvious reasons. I totally understand his burn out too.
Wishing you & your family
the very best in this difficult situation.
Just saw your correction to lealonnie and your mother is not 54, but actually much older.
First, mostly addressing questions about your mother:
As others have noted, it certainly sounds like your mother was having issues prior to the surgery. Also noted, surgery (anesthesia) will often bring on symptoms that seems like (or could become) dementia. UTIs can sometimes do this as well, but in general it will abate or go away over time for the anesthesia or UTI. Your later post about renal failure *could* be related - untreated UTIs can lead to renal failure. Hopefully with treatment she will recover some. Given that she was often in soiled panties, it is likely there was a UTI.
Your description of how she was prior to the hip issue certainly sounds like she had something going on. It *might* be because your brother was catering to her needs too much, but often isolation and toileting issues are related to early dementia. In our mother's case, the first sign I was aware of was repetition, but she also started self-isolating (55+ condo, not IL, but would join others, etc and started making excuses, canceling appts, etc.) You ARE certainly correct that IL is not the place for someone who needs assistance with toileting and falling. Bro is blinded there. I can relate to having a brother like that. My OB could be his twin - always critical of others, everyone is stupid but him, he knows it all, they aren't doing their job, etc.
Now, he DID take on the caretaker roll and if he were a little more diplomatic or understanding, helping where you can would be doable (doesn't have to be the hands on.) Being unreasonable and rigid in his thinking has led to this awful situation. My role with our mother was similar in that I handled/managed everything while she was in her condo and now in MC. OB is not local (2 day drive away) and YB is still working, but getting them to work with me was a joke. OB is, for me, out of the picture. YB is being a poop about the one thing I ask him to do - she no longer stands or walks on her own and I can't support her weight. One medical treatment is not local, so we have to transport her there. FOUR times/year and he makes it out to be such a big deal and keeps trying to get out of it! By the time he can retire, she will likely be gone, so boo hoo. My "retirement" has been doing what I can for her - all of what your brother is/was doing, just not the home care. Unless something happens to me, he will NEVER know the full scope (I have given him documentation so he knows what needs doing, but I doubt he even looked at it.)
It is great that he has done all this for her, but she really should have been in AL, not IL. Sounds like initially she was doing well, so perhaps she liked the hospital and not the rehab (or staff.) The first PT/OT they had for mom was fine (except she wouldn't remember to do the exercises.) The second round, she refused to work with them. She even told them THEY should do what they wanted her to do. Given the serious regression, someone should have had her checked to rule out any medical issue. Instead of taking her out/home, it would have been better to have her thoroughly checked by her own doctor first. They might have found the issue sooner and not put her through so much.
Although dementia can seem to be sporadic or sudden onset, it is more likely that she was already headed down that path. Unless someone lives in close proximity, the early stages can be missed. People can "show-time", which can be deceptive if visits are short (dropping in to bathe, deliver food/meds, etc.) This can't be maintained long, so being there all the time can make this more pronounced. UTIs can also bring on these symptoms (mom's first after moving to MC showed up as severe sun-downing, subsequent episodes have resulted in night time bed wetting - both resolved when UTI is treated!)
More TBD...
"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.
Jenna
If she is hospitalized... and Social worker asks or suggests the 30-90 days respite/rehab care,,, TAKE IT. They only ask you once. If you decline, it's up to you to take care of her or your brother to take care of her. Sounds like he is tired now.
In that 30 days, take your time and invlove yur brother and look for a place that both of you like. Hopefully it's near one of your families. Once you lock into a place, visit is as often as you can before mom gets out of hospital.. Make sure you like what you see, hear, and smell... Visit it again. And ask for a tour, they usually feed you lunch so you can get an idea of the food as well.
Mom's delerium & Brother's denial.
Delerium caused by hip# & surgery is very common. Can waver on & off for weeks. Impaired kidney function causes toxins to build up with confusion/altered state/delerium also.
Hopefully now that the new medical problem has been identified & being treated, Brother accepts what is real & moves out of his denial stage.
Getting an accurate diagnosis is Step 1. Step 2 is an appropriate care plan. Step 3 review the plan. Step 4 change plan as required. Your brother cares but maybe didn't do any of that - like so many others he had his 'lone hero' cape on & thought if he loved her enough he could fix it all. No time for his lone hero act - working as a team with you will help Mom more.
I am sorry you are going through this with your family. Best wishes for a smoother path forward.