We moved my mom in to MC 3 months ago, because it was our only option. My mom was at home and there was no care plan in place and my mom's home needs cleaning up and updates for safe living. She wouldn't let us do anything and was quite difficult. We just needed a break. We knew she would not be able to afford to stay anywhere for a long time. After a rough month of anger, my mom has now been stuck where she is for the last 2 months. Besides the current health crisis, since my mom moved in there's been reports of rampant fraud, abuse and neglect. Many of the employees have left and are filing the appropriate reports to authorities, and honestly I hope the place gets shut down. I'm not going to get into details but it's a bad scene..and my mom thankfully is very able bodied and doesn't rely on these people for much. She's kept her room packed up and ready to go since day 2.
I've been visiting her a couple times a week, and she is so happy to see me but is so sad I can't get her out. I've talked to several people who worked with her and they said she's gone through a lot of changes..her emotions have stabilized and she understands she needs help. With the right plan of support in place, I believe we can have a go at home. It would also be a massive financial savings for her. She just desperately wants to be in her home (yes, she knows what home is) to putter in her garden and be among her sentimental things and see her family. The anger has completely gone. Problem is, my siblings (whom she designated as POA and health agent) are and have been out of touch with mom's needs, desires and requirements, prefer to leave her where she is, thinking things will get "fixed" at this facility. They are not only willing to wait it out at $6k+ a month (and my mom's health and well-being at risk) they won't even consider letting her have a go at home with ample support while she is still able -bodied and mostly aware. I'm speechless frankly, and well aware they simply want to do what's easiest for them and keep their hands clean of mom.
So at this point my hands are tied and the only things I can do are see mom as often as possible to help ease her pain and sadness and keep a watchful eye and report what I see to the fraudulent director and the corporate office, as well as file a complaint with the state social services.
I do so deeply regret putting her there now, and realize I was at the end of my rope trying to do it myself. We just needed a break and a chance to get her house safe. I had no idea my siblings could be so cruel! Mom hasn't been easy..but this is just evil! And to waste her hard earned money to boot.
I appreciate any support from people going through the similar circumstances. I never dreamed it would come to this. :(
"My siblings will not honor me with so much as a phone call to talk about what is happening with mom. I'm disappointed (but not surprised) that my siblings prefer now to not deal with mom, her disappointment, and her immense greif, because they could not handle it"
Maybe you are feeling the same with the caregivers here that have offered suggestions. If you approach your sibs as you have caregivers here they will avoid you in an effort to avoid confrontation. Are you frustrated and angry? Yes most definitely. There are much better ways to talk to people and deal with your feelings instead of taking it out on your sibs and others here.
I am going to offer a suggestion that I don't see others have as of yet. You will not like it so I am done here and will not honor you by checking back in. Have you thought about therapy for yourself to help with the guilt, frustration and anger that you are carrying? You just may find that helpful. There may even be a social worker at the facility that could help you with that.
Best wishes.
Siblings are what they are. We get along pretty well but no one's ever been close. We are fairly independent people. And I honestly don't care what they think of me. People do what they do and time moves on.
The facility is gonna be investigated.
Gosh, I'm allowed to be a little frustrated in this situation! It's a frickin' mess! I'm human after all. Anger was fleeting. I don't hold any guilt. It honestly feels like weeks since I first posted. If I don't take care of myself I can't help anyone else.
I've moved on and I'm being an advocate for mom in the best ways I can. But I can't delete OP, or close comments. That's why I posted again under it.
Are you as prickly to the people caring for your mom at MC as you are to the people on this site?
Her brain was irretrievably broken and without the chemicals that it needed Those meds supplied the balance. When, at the end of her life, my SIL found her weeping in terror one evening, we suspected immediately that her meds had been reduced. As indeed they had. We raised Holy Heck and got her previous levels restored.
Gemma, I've been down this path, with my mom, with my MIL. My best friend has her mom "at home" with 24/7 caregivers. To say that her mother is getting poor care, is in danger from lack of medical oversight and that my friend is on the verge of collapse is not exagerating.
I wish you and your mom all the best and hope you find a good solution. As someone upthread said, perhaps you need to get guardianship if you and mom are in agreement that siblings are being cruel.
I'm sorry to hear about your friend's mom..I'm sure it is quite horrible.. I'm sure she's glad to have your guidance. It is a treacherous and heartbreaking path.
I have never claimed to have all the answers. I just feel it's important to consider the situation dynamic and be in communication about it. But if my opinion isn't wanted there's not much I can do. I was just surprised to be stonewalled.
I've already moved on. For now I am focused on my mom needs where she is. And from I hear it sounds as though there are many reports being filed at the state and corporate level against the appropriate people, and I hope that justice will prevail. If not then I certainly hope my siblings will consider moving her. It is frustrating that the one who makes the decisions is the least engaged. But it is what it is.
ps. If the place is full of problems, contact a lawyer who can represent your mom and /or you in filing a claim against the place and trying to get them to change. There are different remedies to attack a profit seeking home with services below required standard of care.
I'm looking into how to report the facility properly. I find it strangely funny that my mom's POA is already an attorney. Gotta laugh.
I NEVER excused the abuse. I pointed out that you mom was getting medication management and that was probably making a difference in her level of cooperation. You didn't indicate that she was "drugged up".
She needs better care. But don't expect her to be less difficult when she comes back to in-home care and she refuses her meds.
Psych meds have their place in dementia care and mental illness; they don't solve all the problems, but they can ameliorate some of them for the patient.
I don't expect anything to be less difficult. There is no easy, simple answer. Chances are great it'll never happen anyway.
I understand psych meds can and do help, but they should never be a substitute for human interface and care. And they very often are.
Hopefully the people running and working at this place will be brought to justice. I will do my best to see it is so. Focusing on my mom and her needs.
Empathy and compassion isn't agreement, or giving false hope, it's just normal human heart centered response.
History will judge our society harshly.
We've polished up our asylums of the past into profit driven "care homes" supported by profit driven sick care parading as health care that doses out just the right pharmaceutical cocktail to prolong the lives of people we have found too difficult to deal with in our preoccupied lives. We keep them alive long enough for a corporate entity to drain and pocket every penny of our loved one's hard earned savings and then beg the government for more money to make it last longer. We tell ourselves that the cruelty, abuse and neglect that people suffer in their biggest hours of need are just necessary collateral damage. 'But they are still alive, at least!' The structures that have programmed us into thinking This is the Best We Can Do!! and support this utterly nonsensical and cruel approach to elder care and end of life in our society are based in profit and greed.
Sure, there are exceptions. There are wonderful caregivers and compassionate healthcare providers, just doing their best. And many of them are calling out a system that promotes profit over individual needs. Nearly every professional I've spoken to will admit, when pressed, it's a broken system, and there's no right answer, but yes..if there's any possible way to keep a loved one out of a care facility, and tend to them at home, then give it a go. But our society does not support this approach. Not until loved ones are NEARLY DEAD. Then it's "Oh, yes..they should be at home now..it's time for hospice care..let them be comforted now." Preposterous. And cruel.
I don't have all the answers and this way of thinking about death and disease in our society isn't going to change anytime soon. But I will do whatever I can to counteract the effects of the BS going on in the name of care.
For anyone who has a loved one at home or in a care facility, God bless you! It's a treacherous and heartbreaking game we play. Best wishes~
I am going through this right now too- minus the negligence and fraud. My husband and I really don't like the placement his parent was given. It's not negligent or fraudulent, it's just not an appropriate level of care and it is unaffordable if care will be required for more than a year and a half. But the power of attorney is in charge.
I hope you find the perfect situation for your husband's parent. Best wishes~
Unless Mom changes that decision, there is no discusssion
You have already told me how you feel in a comment below...I think it was something to the tune of 'no matter the neglect and abuse...at least the meds are getting dispensed.'
I find this approach to caring for vulnerable people morally reprehensible, and if the majority of people here agree with it, then it's very true, there is little for me in this forum. TY!
I do indeed regret going along with my siblings. At the time, I was not coming from a place of what could be best for my mom's welfare. I thought I was out of options and acted out of desperation instead of thoughtful consideration. I didn't know then what I know now. I went along with 'this is the best thing for now' with the understanding that reevaluation as a little time passes would happen. The fraud, abuse, and neglect that is going on where she is simply galvanized my gathering of information and resources for started a discussion about evaluating the situation. My siblings will not honor me with so much as a phone call to talk about what is happening with mom. I'm disappointed (but not surprised) that my siblings prefer now to not deal with mom, her disappointment, and her immense greif, because they could not handle it. Talk about feeling guilty! They have busy lives. It's certainly easier for them. I would like to think they will move her from the place she is now if things don't change, because her needs are not being addressed. My sister is a selfish person, and my brother emotionally distanced from my mom for at least a dozen years. He's never had a pulse on his mom. I wrote about this somewhere else as a reply here but no idea where it is now.
That being said, I have faith that all will be well. I'm looking for the silver linings. I don't carry any guilt, because I did my best at the time. The feeling of betrayal I can get over fairly easily. It's happened before and it will happen again. I don't have high expectations when I have no clue about someone's moral compass anymore. I'm just focusing on my own strength, looking for creative approaches which are in my control to keep the people we are paying on task and in integrity, and help bring mom a little happiness and help process her sadness. It's the only way she could ever have a chance of adjusting, and it's fairly unlikely she ever will. Time will tell.
I spoke with a nurse practitioner today with a dozen years experience going in and out of facilities. People are dying, she's seen them she said, not from Covid 19, but from not being able to interface with their families. From being shut in and not getting out in the world. Many are horribly depressed and confused. I pray for all these vulnerable people! My life is easy compared to theirs!
Once mom was placed she required much more attention from POA than previously. She had multiple psych evaluations. And twisteds thought MC would be cheaper than her being at home. You see, they were worried about inheritance.
Well, low and behold, mom's care costs skyrocketed because she needed that 24 hour companion. Sissies would not believe me when I told them mom's behaviors would be uncontrollable. They learned quickly.
Finally, the Xmas after mom passed, twisted 2 finally said mom would have been better off at home. I thought, no sh!! Sherlock. That is the only acknowledgment I have ever received and will ever receive.
You see gem, people responding to your post, many have actually been where you are and are sharing lessons learned. Often new posters will go with knee jerk reactions, as you did, becAuse they are just not ready to accept reality. We all wish it had been easier for us. Maybe sharing our lessons learned and experiences will help you. But that is not possible until you face reality and are ready to listen.
I have accepted reality.
I'm not a new poster, though I don't hang out here much. Once in a while I'll offer a few words of support or comment on something in my experience. I never propose to know what is best for someone else.
I understand none of this is easy. Nor is there an easy answer. I'm not even saying I know everything. How could I possibly? I just don't understand how people who are responsible for a vulnerable person's welfare so easily turn away from their care beyond writing a check.
“Based on responses here, there was only one person in a similar situation.. which is a disagreement about the best options for their elder. So that’s that. Which I’m fine with.
Otherwise it’s people giving their two cents, which is fine for a forum I suppose!”
Ok I’ll bite. What exactly did you want from the forum if wasn’t our “two cents”? That’s really all ANYONE here really has to give you. No one here is an expert or in a position of authority. This is a community of caregivers and people use their own knowledge and experience to help others. If that’s not good enough for you then I don’t know what to tell you.
A few months ago, this forum seemed to at least have some people offering support which doesn't really have to always come in the form of opinion (i.e., 2 cents)
Not looking for an expert, just someone in a similar situation. I know from experience there are plenty of families that have disagreements. Evidently very few of them are on this forum!
The POA is the one to make the final decision, of course, and it's likely not 'cruelty' based but safety based instead. Dementia gets worse and worse with the passage of time. If your mother is still lucid, then she's likely lucid enough to say WHATEVER she feels she needs to say to get out of the situation she's in and back home again. Where what used to go on will go on again, but even more so now, with advancing dementia. This is probably why your siblings don't want to repeat the cycle that's already gone on.
You are both fortunate to have visitation privileges right now, as the rest of the country seems to be on lockdown mode in ALFs, as I am with my mother. Wishing you the best of luck!
Sometimes, people do act in ways that make one question their moral compass. And you are very blessed to have never run across that, and to have never felt betrayed. Good on you.
If cruelty can be defined as failing to look after the needs of a person after shutting them in a home with substandard care than maybe that is so. If cruelty is not being in conversation with the person most in touch with the one shut away and seeing them and what's going on (albeit it limited as I can only do window visits) than maybe that is so. But it could be something else. Close-mindedness? Uncaring? I don't know. It's just mincing words.
Shame on me for having high expectations for my vulnerable mom to be cared for by the people responsible for doing it.
I remember a situation like this from a few years ago. A person asked for advice and then was snarky to the people responding. Some people commented, "Fine. I'm out." One compassionate responder pointed out that anger can sometimes be a mask for other difficult emotions such as fear, sadness, guilt, or feeling overwhelmed and out of control.
That comment, and an apology from the original poster, changed the tone of the interaction for the better. From there, helpful advice was given and received.
I sincerely hope that you can get to a point that you can see that the people responding are trying to help you.
I’m totally fine with people not getting where I’m coming from.
Based on responses here, there was only one person in a similar situation.. which is a disagreement about the best options for their elder. So that’s that. Which I’m fine with.
Otherwise it’s people giving their two cents, which is fine for a forum I suppose!
TY!
advice.
POA believes that since she was diagnosed with dementia, then doubt can be cast on everything that comes out of her mouth. A LOT of people believe this. That when someone has been diagnosed with dementia that all of their brain has shut down and doesn’t work. The idea that people with dementia can and do have times of intelligence and insight, can process thoughts, can speak for themselves is something that cannot happen. It’s a blanket generalization. “She doesn’t remember what she ate for breakfast? Then she has no clear thoughts ever and we must decide everything for her because she can’t be trusted.” This is simply false.
Of course it doesn’t remain that way forever as the disease gets worse.
I'm looking for silver linings all the time, and praying for the best outcome.
It would make more sense in a lot of ways for me to be POA. I can say with complete accuracy my brother would never transfer. He has already deemed my mom totally incompetent, and would say it's against her wishes.
He is also POA for my dad. He is an attorney with a full plate and young family, but he would never give it up. His perspective is mostly academic. I'm beginning to think law school perhaps programs the empathy out of people. Or at the very least intuition.
I won't fight them on selling mom's house. It will have pay for her care to stave off burning through her retirement. Even if she was living there, she could downsize..and talks about that to me frequently. She just always wants a little garden to tend to. It's just got a tiny payment every month which is a damn shame to lose.
But guess who will be the ones doing the work required to get it ready to sell? Including the massive garden already there.
Me and my family. Sigh...
Have you done a cost analysis of 24/7 homecare vs MC? I bet they are very similar.
You appear to think that just because you plan to hire agency professional CG’er’s they all just show up everyday on time and willing to work. They will not. Then you will be scrambling to find a replacement CG on short notice and when you cannot, will you be available to go and take a shift the agency couldn’t cover?
I say work with the POA and accept her plan/decisions. You have no control over your mom’s funds to pay home caregivers & your sister, the POA, feels mom should stay where she is. It’s not likely your sister will agree with your plan.
So here’s your advice - your mom chose your sister to make these decisions for her to assure mom’s well being.
I say work with her because actually you don’t have another choice.
First, I'm sorry about your MIL. That's rough. But your situation is not mine.
My mom doesn't need 24/7 homecare. One day, she likely will. Of this I'm well aware, which is one reason I'm concerned about paying so much now for her to sit around and stare out a window for over $200 day. She is very able bodied and just needs reminders, some meal prep and her meds dispensed. I also know how much nursing home care costs, as my father is in one now. It's astounding. And there isn't even much one on one relating and companionship. You gotta hire a private to do that. Which I have.
There are in betweens and nuances. Not everything is black and white as people make it out on here.
I strongly believe that we must do our best to take care of our elders with respect and dignity. To help them when they need help in ways that serve them with love and kindness. Putting difficult people away behind locked doors seems to have become as acceptable a "normal" as drugging them up. And yet we intervene to extend their lives. As a society we will be judged for this. We feel guilty about it, but it helps us "move on" in our lives because our elder becomes another persons something to deal with. I've seen some ugly stuff in care homes, and know stories from people who have worked in them. To turn a blind eye to that is abhorrent to me. But that's a whole other conversation.
Her home is safe, would be more so with some bathroom changes and ramps eventually added (she's capable of steps) and she is not in danger. She putters around her garden pulling weeds and drinks coffee and watches tv. Thousands of old people live out their lives at home with appropriate help. Even the forgetful ones. Sometimes that is not the case, and more care is needed. And then we respond thoughtfully, and hopefully not out of desperation.
The POA, not my sister, has been emotionally removed from mom for at least 15 years. He moved away and he's seen her an average of 5 days per year in the last 10 years. Vacations were always more important than seeing his mom. My mother put a LOT of hopes in him which were not met. I commonly was left with the emotional fallout of his brief whirlwind visits. Since going through her papers, I can see her pain was much worse than she let on. I don't blame my brother..these are choices he made. My mom has had some hard times, and didn't work for a healthy awareness. She's not been easy. And in her depression over the years she talked about changing her directive, but never did. I think she holds out hope that he'll do the just and right and loving thing in the end. I can hope that too.. it's not over til its over. It's not ME that doesn't want to have conversations about concerns for my mom, as you assumed in your comments, it is my siblings. I have found our parents have become for the most part an "out of sight, out of mind" concept for them.
But I'm allowed to comment on the fact that the person most removed from the desires, needs, and requirements of my mom, the person who has taken the least amount of interest in them for most of his adult life, is now responsible for them in her most vulnerable and desperate years.
I'm also allowed to ask if anyone else has been in a similar position as me, watching it happen to a loved one.
The concensus here is legally focused. 'too bad..grab some popcorn.'
Which similar situation are you asking about the most? You wrote about several intertwined issues...sibling disagreements, MC facility problems, dementia, unsafe home environment, money, etc.
Since your heading is about sibling disagreements, I will only address that issue. You obviously love your mom and want what you think is the best for her. Because you are not POA, you don't have any legal way to move your mom.
You wrote, "So at this point my hands are tied and the only things I can do are see mom as often as possible to help ease her pain and sadness and keep a watchful eye and report what I see to the fraudulent director and the corporate office, as well as file a complaint with the state social services."
Perhaps, if you send these observations to your siblings as well, they will be more aware of what you are seeing as the "boots on the ground" person. It may not change their minds about bringing her home, but may be a way to get her into a better facility.
I'm obviously aware I can't move my mom. I'm honestly just asking them for a conversation about how to approach the matter is a creative, problem solving way. Putting her there was supposed to a respite for a while. Unfortunately my siblings aren't interested in hearing about what is going on with her. They are not proactive people and would rather not be involved. They don't want to hear about mom not adjusting and being depressed.
So my question referred to anyone else experiencing this kind of sibling stonewalling to having a conversation about doing better by their parent.
Thanks for your response.
Why do you think your mom wont revert to old, bad habits when she returns to a familiar setting?
I would proceed with caution.
Why even answer a post unless it applies to you?l
Mom's assets are for her care. Do you really think that mom would want one of you to take on the load of care? Or want you all fighting over what is best for her?
Take a step back and think. Mom is better in care than having her children fighting over her.
Sorry you are so stressed out about your mom living with you..that is quite a load for you to bear! It's not something I would or could do.
You probably don't want to hear this, but if you push to bring mom home, don't be surprised if you get zero support from your siblings in taking care of her.
If you feel the facility is no good, then by all means search for a new one. But be very realistic about what you will be taking on if you bring mom home.
I actually have no expectations of them doing any caregiving. Not sure why you would assume that. One of them doesn't even live here.
I'm not proposing myself to be her primary caregiver. There are plenty of people skilled at doing that. All she needs is companion care and meal prep at this point.
It will be at less than half of the current payout to keep her at home with paid caregivers. Yes, it's an unreasonable amount, and based on the current situation, yes, her money is being wasted. It's never a waste of money when good care is taking place.