Alternatives to moving in with mother. Any advice?

Oedger, I think many of us (myself included) mis-understood when you said "bring my mother home". I thought you meant bring your mother to YOUR home.

I am glad that you're not considering that option; it is very, very difficult to place an elder from home and even doubly difficult to insist that an elder (especially one's mother) needs to leave your home. It must certainly feel terrible and legally, it can be a nightmare (we've had some pretty terrible stories on this board over the years).

I want to emphasize that getting your mentally ill mother the care she NEEDS is what is paramount here. I understand that you are willing to take her to doc appointments, get the house looked after and the like, but do watch out for "mission creep".

My mom, not mentally ill, but with some cognitive issues could not for the life of her understand why I couldn't leave work an hour away several times a week when she summoned me for an imagined "emergency". There comes a time when you need to be able to say "no, I can't do this anymore", mean it and not give in to whining or manipulation.

Wishing you the best!

I want to thank all who have provided input. I’ve learned a lot on this forum. I want to clarify that I’ve never lied to mother in order to get POA. I also really appreciate the comments that were more kindly worded especially. I wish this platform had been available to me 10 years ago when we went through her knee replacement. Thanks again!

You don’t want to live with her or her with you. Placing her where she can get the 24/7 care she needs is not being cruel. Letting her rot in her own filth would be.

There are no alternatives to the situation. Placement in a facility is the ONLY option.

Living in an RV in her driveway? Really? That’s major grasping at straws! You know there is no other option. Focus is all on getting her placed, not on unrealistic ideas.

You cannot promise your mother that she won't wind up in the psych ward after surgery. Are you willing to tell her that?

With someone that has mental illness lying to them just to get POA is only going to cause havoc and trouble for you.

Tell your mother you cannot guarantee she won't end up in the psych ward after the surgery since she is prone to hospital psychosis.

Have you spoken to the doctor about recovery from this surgery and what to expect regarding mobility, bathing, toileting and eating?

Will mom be going to rehab after surgery and for how long?

Oe, so, how much care do you think it would be feasible for you to do at home?

20 hours a day? 2 hours a day?

Is being "on call" 24/7 do-able for you?

When she starts hoarding YOUR space?

How about when she refuses to allow the exterminator in because she is being poisoned?

Please think about this in broader terms than you are.

I pm'd this to you but decided to post it here in case it helps someone else...

Hi. I didn't see a way to reply to your question in the thread. Yes my mom is at home now. She got clearance to eat food by mouth about 3 weeks ago. She was taking formula 4x a day. She has reduced that to 3 and has started eating more food soft and moist but it has been a real challenge.

She got used to the tube, and she's scared of choking as she aspirated before we knew it was such an issue and after being sent home twice from the hospital with them saying it was only "inflammation" and would resolve itself which it didn't. She's lucky she didn't die honestly. So psychologically as much as she wanted to hear "you can swallow" it's been a very difficult adjustment without much guidance on how to transition and be sure she has enough calories (using nutrition drinks etc).

But like even liquid Tylenol, she asks me to put it through the tube instead of drinking it bc she has no confidence in her swallow. Been trying to get her to eat a little throughout the day to keep the desire to eat there and trigger that reflex.

The time in the hospital did a number on her for sure. So it's a hard decision for sure especially when constant pain is involved a fear of being paralyzed! It can also affect bowel and urinary function, the spinal stenosis.

When is the surgery going to take place?

What is your plan going to be? Have you decided, after all the comments here with a lot of good advice?

"I asked APS about taking her. Until she’s declared incompetent, nobody can take her."

Right, not you, not them.

The way the system works, your mother has to fail for the State to step in.

We have a poster here, Katsmihur. She was in exactly the same position. Look up her posts.

Have you read "Never Simple" ,by Liz Scheier?

Until you step back and stop being her rescue plan, she won't get the help she needs and deserves.

My goodness why would you consider getting involved with this? The more I read, the more red flags I see.

Why not let the state handle her? You are not qualified to deal with someone with all her problems.

Your plans, to me, make no logical sense, you are grabbing at straws.

There is no way that I would agree to being the POA. Cruel? There is nothing cruel about doing the right thing for her and your family.

All I can say is good luck!

I wasn't going to bring this up bc in my opinion it's very annoying to be told what can go wrong with a surgery once it's been decided on.. But you mentioned it on a reply so here goes.

My mom had this surgery September at age 78 resulting in severe dysphagia (inability to swallow) ending up on a feeding tube which she is just starting to wean off of. She was in the hospital for four horrible weeks and then rehab for two with severe depression and I believe delerium.

Her pain before surgery was unbearable, thus her electing to do it. Her pcp was not enthusiastic about it, but ultimately signed off on it at her insistence (I know he still could have said no, but then she'd still be in bed in excruciating pain).

The pain actually is gone. But at a very severe cost mentally.

Any house cleaning etc should be paid for by your mother.

More than likely her house will go right back to being a hoarded roach infested mess once she is back home.

Also if you get an RV dont expect to be able to recoup most of the money from it.

What if mom needs assistance with toileting and wiping and showering are you going to do those things for her?

It is not cruel to let the state take over and care for her.

Remember moms still calling the shots with her refusal to get rid of her hoard and you are going along with it.

There is no way spraying will be effective with trash all over the house and you will have to enter her house to basically take care of her because you are afraid her mental illness will get worse in a facility.

Just curious as to what caused the hospital delirium. Was it withdrawal from drugs she was using before being admitted, an infection, reaction to a medication they put her on? Or the dementia she has (which if thats the case she should ve in a facility) There has to be a reason for it.

NO NO NO! do not move into that! I read one of the responses is to let APS take over. I think your best bet is to let her go to rehab, then she goes to assisted living. Get her place fixed up as best you can and see if you can sell it. Use the money to take care of her in the facility. Just think if bugs are running around her house they will get into your purse, suitcase, bags eww! Rats carry diseases and you just don't need that. If you feel you need to be there for your mom get her in a place that she can be safe.

I have to echo others here. You can care core and help your mother manage and get care but when it comes to any physical hands on care or living arrangements you are 400 miles away like your brother. If she didn’t have you at all she would be getting care so if you choose to do so you being involved makes sure someone who knows and cares about her is helping to take care of things and make decisions.

No matter what any hospital discharge organizer or doctor says you do not have to “take her home” or provide care if she needs it, they are responsible to make sure she has at least the minimum care she needs, you can see to it she gets more if possible.

If you are going to take any of this on and if she wants to accept your help she needs to include you in conversations with her PC, any specialists and especially the surgeon, it’s impossible to to know how necessary or not this sugary is without hearing it from the surgeon directly with Mom in the room so you know she is hearing what you are. Second opinions are always a good idea when talking about surgery unless you have a special connection and knowledge of the doctor you are dealing with. By the time my brother finally went to the cardiologist with my mom she needed surgery ASAP and had been told to see a surgeon for years, a referral she never followed through on even though the cardiologist had been clearly telling her she needed to and why. She had a stroke on that Saturday and they were supposed to meet with the surgeon on Monday, who knows what we might have avoided if she had just followed through when she was supposed to. She kept saying “my blood pressure is great, everyone says so” which was true but her blood pressure was low because her heart simply wasn’t working well enough to make it high! So until you are directly in the loop you never know, we all tend to hear what we want. She needs to make you health care proxy and list you with ever doctor and hospital as such. She still makes the decisions for her body as long as she is capable but if you are going to be involved you need to have full access. You also need to respect her decisions even if you don’t agree with them but you don’t need to participate or make them easy. Make sure you both know what the best and worst case scenarios are and what will be required afterward, what the recovery is like.

If and when she has the surgery you can and should be around.
When planning for her rehab make sure they give her the best shot possible (acute rehab if you can get it) make sure she is on board for it because if she isn’t participating she won’t last there long, then when it comes time to either go home with home rehab or go to step down rehab make sure you aren’t part of the decision equation. If she isn’t ready to live alone then she needs to go to step down care. If she is ready to live alone, according to doctors but with some help then that help has to be arranged before she goes, you can’t be any part of that help…you live 400 miles away when it comes to that.

There is nothing shameful or uncaring about knowing you can’t provide any hands on care for your mother, it’s simply knowing the limitations you both have and caring for her as much as yourself by not even considering it. Trust me the rest of this is time and energy consuming enough and it’s as caring and helpful as taking her in, more so in her case.

Hang in there!

OEdgar, the more you write, the more this surgery sounds terribly ill-advised. But as your mom is still deemed competent (it's a very low bar) it's HER decision.

However, please understand that HER decisions, good or bad, do not dictate your behavior.

I have an adult daughter who is making very bad decisions right now, leaving her asking for assistance. "No" is my very consistent answer if it puts me out in the least.

I will print a computer doc for her; I will NOT rearrange my life to take care of her kid. I will not let her move in with me.

She's still my daughter; it's just that I have no sense of "have to".

Be your mom's daughter. Advocate for good care. That will be a hard enough job, believe me.

You say you had APS involved, let them take over. Tell them you can not continue to do anything for Mom. You cannot be her Caregiver. The State will step in and become her guardian. She will be placed faster than you can do it. The guardian will use what assets she has for her care then place her on Medicaid. You can visit just not have the responsibility.

From what Lea says, this operation can cause more problems for Mom meaning more care. Its OK to feel some empathy for her but please do not take on her care.

"She’s also a raging narcissist/cluster B personality disordered person" For that reason I would not take on her care. You were estranged for a reason.

That PCP and surgeon better tell her what can go wrong. If they don't and something happens that they knew could happen, they could be sued. They are suppose to tell you the worst scenario too.

I agree ur friend got bad advice. Family is not responsible for cost of care. Medicaid pending means Medicaid should pick up the cost from day one once person is accepted. The only time that may not happen is if there is a penalty for gifting a large amt of money. Then its the family pays during the penalty period or does the caring.

There is no if Mom goes to Rehab, she goes to Rehab. That trailer, in my Township you cannot live in a trailer that is not hooked up and in a trailer park. And her house, all upholstered furniture needs to be thrown out that includes mattresses. Maybe even burned. Everything possible needs to be taken out and washed. Dishes and stuff taken out of cupboards and stored someplace. I would get rid of all food. Then the house is fumigated from top to bottom. It may have to be done more than once. Then the house has to be thoroughly cleaned and anything brought back in, washed. Rugs will need to be shampooed. Then u can put her house up for sale. This needs to be done now using her money. Keep all receipts to prove to Medicaid her money was used for her.

If I had to look at what you will have to do for a woman who was never really a mother to me and has the mental problems she has, I would allow APS and the State to take over. Especially since ur not really into doing this and you just feel stuck. I see lots of stress.

You're estranged from your mother for a reason. Keep it that way. Tell mom if she has the surgery she will have to find her own care and make aftercare arrangements.

You can't move in with her because you are afraid she will have another mental breakdown.

Please listen to the posters below like Lea regarding this procedure.

You shouldn't have any part in your mother's care. Why not take a cue from your brother's decision to remain estranged, he being an LPC? HE doesn't feel evil staying away! Does he say anything about your involvement with your mother?

So she CAN still sign for herself? If she signed herself out of rehab AMA (or even refused to go at all), could she get herself back to her house? Or would they call YOU?

You seem to think you can save her. You can't, and you won't. I think because your mother is a difficult case, that you might be pressured extra hard to take responsibility for your mother. Don't fall for that trap.

Another point, about NH Medicaid. Look at it this way; Mom has assets and income. Her lawyer may need to set up a Miller trust or some other arrangement to get her income under the limit. Her assets get used to pay for her care until they are depleted. Where my mom lived, getting her into a NH and private paying forc 2 years gets you a MUCH better placement.

"But I really feel cruel walking away".

You don't have to walk away..
Sit in a chair as Mother's visitor - in hospital or rehab.

There is an enormous distance between 'moving in with Mother' & 'walkng away'.
So many inbetweens exist... You can dip just a toe in the water, wade in to your knees, or up to your waist. It's not just a choice of stay out of the water completely or dive to the very bottom of the deep end. Choose your level.

Are you sure your question is not your mind running away with imagination? From stress & worry? Being clouded by that F.O.G?

Worried about things that may never happen.

And if they do, you will handle them at the time.

Might a second opinion be advisable?

A PCP who "freaks out" (did you observe this, or reported by mom) is not someone I would trust.

Any chance of getting mom into see a psychiatrist BEFORE the surgery?

It sounds like mom needs a plan to address the hospital delirium BEFORE it happens.

Your friend is being poorly advised, unless she's got a contract to get paid back for what she is laying out.

If your mom leaves AMA, you call 911. You do NOT take her in or live with her.

If you get POA you use mom's funds to pay for her care. Not yours.

This surgery sounds totally ill-advised, frankly.

NOPE, NOPE, NOPE . Like most of the other posts….Rehab, elder care attorney , social worker, Medicaid etc. Whatever gets you out of 24/7 in a gross uninhabitable home .

My big concern about rehab is that she will be too delerium -ridden to cooperate with the rehab, and they will discharge her. Otherwise, if I could count on her to stay the 20 days I’d think she could come home in decent shape. They told me one week in hospital, plus 3 weeks rehab. She’s also known to leave AMA. I’ve learned on here if she tries this I’m am to ask for a mental eval. Problem is, she’s been known to pass those even when she was pretty nuts. I have that info from a police report last fall. They called the hospital, were told she’d been “passed” but the nurse said she was in no mental shape to go home alone. I think that’s the stay she left AMA. She says they were holding her prisoner.
I think this surgery will be a disaster. Her PCP insists she have it. He’s talked her into it.
I got to speak privately with the surgeon, and was very Frank with him about the mess she is.
The part about her money… what I meant by manipulating it was to cash in small IRA and bonds to spend down. I don’t plan to do any funny business with Medicaid.
Again, my friends Medicaid pending mother is being funded by family until Medicaid kicks in. What to do if family has no money?

I can’t do $12,000 for several mos. Her moms care is 400 a day!

Absolutely NOT feasible!!!

Your mom needs more care than you can possibly give her by yourself.

Ditch the RV idea unless you are buying it to travel far away from the rats, roaches, clutter and filth at your mom’s house.

"She’s supposed to go to rehab".

So.. yes.
Mother has Surgery-Mother does Rehab-Mother goes home (if able).

I'm a planner.. so I get wanting to make backup plans - usually - but am wondering why have an alternative plan here?

We all differ. You are way more invested than I would/could be.

My LO's choices would be;
1. Independent to get themself home.
2. Safe to go home with supports, including my help ONLY IF at a level I felt ok with & ONLY IF short-term.
'OK' being what is reasonable for me & not burdensome
* see below*
3. Rehab

NOT reasonable for me includes: staying over with roaches/pests
NOT staying anywhere without safe & clean bedding
NOT staying if no ability to hygienically cook or wash.
NOT having to hire extra accommodation at my expense eg hotel, air bnb, RV
NOT if it involves taking more than 3-5 days off work
NOT if I have to neglect my other responsibilities to other people, spouse, children, others. All that is too burdensome.

Let common sense prevail!

“But I’m seeing a few scenarios where I might end up bringing her home from the hospital after her neck surgery.”

NO!!

”The trash and cockroaches are mostly gone.”

NO!!!

“A few months ago a roach very nearly crawled on my face as I slept on her couch after an ER visit. We also found a rat in the home during the big clean out.”

NO!!!!

“It reeks of cigarette smoke. There’s no privacy, the bathroom door does not even shut all the way.”

NO!!!!!!

“I could be OK ISH.”

NO!!!!!!!!

“Does this seem feasible?”

NO!!!1!!!!!

No. Just no.

1. Never, ever take your mother out of a facility (hospital, rehab or NH bed) and bring her home. By doing that, you go back to square one with waiting lists. Facility to facility transfers are the ONLY way to manage this.

Say no, firmly, to any social worker or nurse who suggests this.

2. Do not stay with her. Do not pay YOUR money to a NH. Medicaid pending pays back to the date of application.

Talk to the elder law attorney about this.

Having cervical spine fusion surgery thru both front and back of the neck is double trouble. Thru the front, the esophagus is moved aside to access the neck vertebrae which can cause complications like vocal cord damage and loss of voice. Cutting the neck in the back means the muscles are severed and the pain in recovery is markedly bad for most. Most surgeons require she wear a huge hard collar which goes up the back of the skull half way and cups the chin, forcing the neck to be immobilized. Terribly uncomfortable and worn 24/7 for 6-8 weeks depending on how she's healing. A soft collar is worn for bathing, which she cannot accomplish unattended. It's a big deal, this surgery, and dangerous, so if you're being told otherwise, it's a lie. I had it myself in 2008. Your mother will need 24/7 care for 6-8 weeks or more if complications set in.

I would NOT attempt to care for her from an RV parked on her driveway. She cannot be left alone, if she falls it would be a disaster. I'd do as JoAnn suggests 100%. While she's gone, I'd pay ( with her money) to have the house totally decluttered and fumigated and disinfected in case she returns, or, to get it ready for sale. This is the type of surgery that may prevent her from coming home.

Contact an elder care attorney to see about what to do regarding Medicaid and the 5 year look back, etc. "Manipulating" Medicaid is the quick way to getting denied AND penalized.

You'll be in over your head trying to care for mom from an RV. Not to mention, no elder in GOOD shape should be living in a hoarded and roach ridden home. She probably won't even be able to wipe herself due to the huge restrictions from the neck brace. She can't bend down to pick things up......I had to use a grabber. A toilet seat riser is a good thing to have in the bathroom too. We just don't realize HOW much we turn our heads during a day and what it means to lose that ability....it affects EVERYTHING. Literally.

Good luck to both of you.

You have an almost infinite amount of alternatives.

Once she's in the hospital for the surgery, never allow her on your property again. Do not for any reason allow her to move in with you, even "temporarily". She belongs in a facility if she cannot care for herself.

Do not entertain the "live in a trailer at the roach house" idea whatsoever. That sounds like the plot of either a cheesy 80s comedy or a gritty 70s horror film and is an absolutely horrible idea either way.

Once she enters that hospital, she should be in some sort of facility for the rest of her life. If for whatever reason she manages to make it back to the roach house, provide no assistance to her whatsoever. No hands-on, no financial, nothing.

Hi,

No this does not seem feasible to me for you. Please do not bring her home after her surgery (I believe she is having ACDF spinal fusion from what you described, my mom had it). I agree with Joann. Take advantage at least of the 20 or do days Medicare will pay for at rehab. Get a social worker involved at the hospital and at the rehab and advise she cannot be discharged safely to home.

There is no such thing as a "low level roach problem" one is too many.

During that time you use her funds if any, not yours to private pay for long term care if you must. If she has funds that's what they are there for. No matter how you "manipulate" it there is a five year look back for funds transferred out if her name.

I'm really really sorry you are dealing with this. I know it's easier to say than do, but you are in a no win situation and even if you buy an rv and stay in it, do you think she will continue to improve? Her mental health issues sound pretty severe. You probably would not recoup your cash outlay for an rv either.

I guess just try to think if a friend came to you with the same scenario what would you advise??