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Hello community, mom has severe dementia and requires 24/7 care and supervision, which I am no longer capable of providing. I love her, I have done my best, but after years of doing this I am mentally and physically ill from stress and depression.

But she cannot be reasoned with, has the mental capacity of a toddler. Refuses to go into nursing home. It is no longer safe for her to be home. She has fallen several times while stumbling around the house in the middle of the night, she once fell off the porch. Eventually she will probably fall and be seriously injured.

My understanding is she needs to be admitted to the ER and then hospital will place her, but how do I get her into the ER? Do I call 911 and say "my mom needs to be in facility, it's not safe for her to be at home anymore...." and they'll send an ambulance?

I once called 911 when she fell and hit her head. When the paramedics showed up she flipped out and refused to cooperate. They gave her ativan and carried her into ambulance. If there is no serious injury, can the paramedics say they can't take her against her will? She is clearly not mentally sound. She has medicaid. I have durable and medical POA.

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My mom thought everything was fine living alone at home. She made it very clearly she wanted to die in her house. I tried to honor her wishes. With her advance dementia and no short term memory.

As time went by, I saw she needed some extra help, so I had "new friend" come by and talk about quilting. They would go to the store together, take walks and spend time talking.

I know at some point an "event" would present it self to me that would allow me to take action and move her into MC. That event was a pulmonary embolism. After a week in the hospital, I picked her up and drove her where I live (300 miles) into MC. The drive was uneventful until I pulled into the facility. Then we had the melt down.

I also had a POA, and the Trustee of her estate and access to her bank accounts.
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Ironic she has the mental capacity of a toddler, but still has "smarts" to not want to go into a Nursing Home
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I think you're getting a selection of very contradictory posts. My advice would be to choose the facility first after touring/calling several; reading reviews, etc. In many states, dementia is handled in skilled nursing homes, even though some of your answers here have said it isn't. Memory care assisted living is a great idea but it is VERY costly and many people cannot afford that, so many nursing homes have dementia units that are populated primarily with Medicaid recipients.

The advantage of getting the nursing home set up ahead of time is that you will have chosen it, whereas taking your mother to the ER and letting them decide what to do is more risky in terms of where they will place her. Before arranging for placement, though, you will need to talk with someone at each facility to figure things out, they will want to know about her and might need to get a medical report from her doctor or otherwise assess her. It's probably a good idea to talk with her doctor's office ahead of time and to work with a a social worker or geriatric care manager could be very helpful as you go through this. Not easy, but nursing homes and memory care facilities are used to the upset reactions of those being brought in for their placement, so that shouldn't be a problem for the facility.
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anonymous1732518 Aug 2023
Good luck with that

Cover909
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If your mother is as disabled and poorly functioning as you describe, it is no longer her choice.

As others have said, there is no "reasoning" left. Persuading your mother to agree to placement is not part of the argument.

You will be limited to facilities that accept Medicaid, but the choice is no longer your mother's.
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Long term care, memory care, and home care aren't the only solutions. See if you have any adult family homes near you (especially ones that have several homes, including one that is lock down for agressive sundowners). I went that route with my dad and the place he first was placed in was really nice...he ended up being with only one other resident and a caregiver with a nice patio, his own room, being catered to, etc, etc. He was really happy there for a short time, but unfortunately he progressed to where he got really bad sundowners, became agressive (jumped through a window because she wouldn't let him go outside to go for a walk at midnight) and had to be taken to their lockdown residence where there were 5 other residents and two 24/7 caregivers. He still had his own room, regular meals, and much more care than if he had been in a place with 30-50 residents. Both places were within 4-8 miles of me so I could visit often, and (if he lasted that long....) would have allowed him to transition to medicaid....ALL their residents (for this one place at least) could transition to medicaid after 3 years of self pay.

If we had gone the other route (assisted living, or memory care) I feel he would not have gotten as personalized care, he wouldn't have been as close for me to visit, it would have cost more and the places I visited would only allow a certain percentage of medicaid beds...so no certainty that he could have transitioned to medicaid after 3 years.

That doesn't answer your question of how to get your mom there, but I did want to throw in the thought of an adult family home. They are actual houses in actual neighborhoods (maybe even in your neighborhood...?) and are a name rather than a number.
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Feathersmith: As a fall is deemed a medical emergency, call 911 and EMS will respond in kind. Once in the ER, it needs to be stated that she cannot be released to HOME/that it would be an unsafe discharge. Bear in mind, that paramedics generally ask the person 'Do you want to go to the hospital?' That is where you step in to advocate.
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anonymous1732518 Aug 2023
Interesting. I thought to they would subtly suggest going to the hospital?

Been in an ambulance a few times and was not asked "Do you want to go to the hospital"? Lol
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Stop caring for her and call Adult Protective Services after 2-3 weeks of no contact. Let them see her in her environment
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No, you cannot reason with a person with severe dementia.
You tell her you're taking her for a ride (somewhere she likely would want to go - a garden, museum, lunch at a restaurant).

You want to keep her calm.

When you arrive, tell her you are visiting a friend there.

Comfort her as much as you can. Keeping her as calm as possible is key to an easy transition for everyone.

Remember to remember ... put yourself (your head / brain) into how her brain functions (parts dying, confusion, fear) and respond to her accordingly. You cannot 'think' react/behave according to how you think; you have to consider how she thinks and interprets change / behavior.

Smile, hold her hand.

When you are there (introduce her to staff as 'my new friends.'

I hope this helps.

Gena / Touch Matters
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Your last sentence is important " you have POA and durable power of attorney". Proceed to find a facility that you choose , make arrangements for her admit into the facility THAT YOU choose and ,arrange transport ( facility Social Worker should be able to help ) .
do NOT try to reason with her ! Dementia patients cannot reason, make safe decisions, nor retain what is said to them. DO NOT try to EXPLAIN it anymore. For her safety, well being and your safety and well being act now. If while you are doing this, she falls, presents with any sign of illness, behavior changes etc etc, call 911 immediately, have them transport her to ER and, confer with Social Services there, refuse to have her sent back home . Have them admit her if necessary and then transfer her directly into a facility (
she is unsafe, your health will not allow you to continue care etc). Do not feel guilty, do not allow her to verbally abuse you or make you feel guilty. She needs 24/7 care in a facility , most likely memory care unit.
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There are BETTER solutions! Try to find in home care for her instead of dumping her into a Nursing home where they OFTEN are abusive and severely neglectful.

Since she is on medicaid you can look into programs that will also help pay for her care and needs right at home. We have one here called IRIS that is wonderful. They will will pay for her caregiving needs (includes family too) and pay for things she needs in the home ...as well as activities outside of the home.

Please do NOT put her into one of these nursing homes ...not if you truly care about your mother!
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Cruzinup Aug 2023
I think your ‘guilting’ here is highly UNCALLED FOR. I can only assume that you don’t have the experience of dealing with a difficult person who is causing you to become unhealthy. And to assume that all care facilities are harmful is absolutely ridiculous.
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Sorry you are dealing with this. Hugs. This is not a fun journey and it is a journey none of us envisioned we would be on, but we are traveling this road nevertheless.

The "hospital route" is a possible option, but as others have said lacking other serious medical conditions that might require a discharge to a "post acute care setting" (typically a "Rehab" facility); once stable she may just be discharged but if you make it clear to the social workers at the hospital that "it is NOT safe" for her to return to be home alone, that "you" and "no one else in the family nor friends will take responsibility to assure she is safe in her home;" then the hospital has a responsibility to work out a "safe discharge." Ask for a discharge to a Rehab facility, so she can get PT and/or OP (Physical Therapy is lower body and Occupational Therapy is for the upper body). If there are other medical needs: needs oxygen, needs IV antibiotics, is anemic, needs wound care then these other "medical needs" can help get a LO into a Rehab placement for a temporary time (maybe a week or 2, maybe longer).

Do research now to identify a high quality Rehab facility which ALSO has a Medicare and Medicaid qualified "Skilled Nursing Facility/SNF" right there so that if they can do the work up and she meets the "level of care" necessary for a permanent placement in the SNF long term care unit; it is less moving from one place to another.

Hope you have all the "legal docs" in order: durable POA (not the springing type), an advance directive naming you as the "health agent" and access to her accounts to help with the paperwork for Medicaid Long Term Care coverage which is different than "regular Medicaid" for just medical care. Your State will want as part of the "5-year look back" all taxes filed, bank and other financial account statements, how any assets if any were transferred GOING BACK 5 full years. Assuming she is already on Medicaid that should help but she based on the medical information submitted by the SNF has to meet your State's "level of care" threshold to qualify for Medicaid Long Term Care coverage.

Another option is to involve Adult Protective Services (APS), call your local Area Agency on Aging and get with APS. Be very clear with them that she is "not safe" to be alone, have documents regarding the hospital trips and the dementia diagnosis. You could pursue guardianship and handle this OR you could leave it to the State to take over guardianship.

None of this is easy or fast; frankly it is all maddening. You might find it helpful to work with a talented therapist to unpack all of this. Caring for a LO in the best of circumstances is a challenge. When dementia and oppositional behavior comes into play with their lack of awareness of their condition and/or refusal to accept that they need help beyond what an adult child can attempt to provide it is a heart wrenching experience.

Further, it is not an adult child's duty nor their responsibility to give up yourself in order to care for a LO "hands on" 24/7! Getting your LO the care they need in a facility is STILL CARING and it is also caring for yourself.

Best of luck with this and I hope you can work on self care too as you work through this. Take care.
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Thankfully my dad passed before I had to figure out how to get him into a facility, but I was very stressed about how I was going to do it against his will. And it would have been against his will as he would have fought it tooth and nail and been aggressive. My friends who have had to place their parents have done it by trickery. They had no other choice. One took her mother out for the day and then to lunch at the memory care unit in the dining room and then said, “I booked you into a lovely hotel room for a couple of nights as a treat while I have to travel for work”. It didn’t exactly go well (her mother threw a fit and had to be sedated) but it got her there and that was the goal. My other friend waited for an event that caused her mother to need to go to the hospital. From there she told them her mother was not safe to live alone and she could not care for her. They kept her there while the daughter got her admitted to a memory care unit she had already arranged and then they transported her there and that was it. She was able to tell her mother that it was the doctors making her stay there “until she got better”.

It’s a terrible situation to be in having to make these decisions. But you have to save yourself now. She will be safe and you will be free from the extreme stress that 24/7 caregiving causes.
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anonymous1732518 Aug 2023
Mother saw right through that "book you into hotel" ruse lol. Good for her. It seems some elders with Dementia still have some smarts left.
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First of all, never blame yourself for a loved one suffering from dementia. It’s not like the flu or a broken leg! It takes months or years to get them tested. My mom didn’t think she needed to see the doctor or answer any of the questions the geriatric neurologist asked her. Doctors were hesitant to give her a diagnosis of dementia. They called it cognitive impairment.
We had a professional caregiver everyday for 3 years. When she started to imagine people coming to her house at night, or people stealing from her, cooking and not eating, the next step was necessary. She would call 911 once or twice a week stating it was her heart. Even the paramedics told me she can’t be left alone. She needed help taking her meds, cooking, housekeeping etc. we did what we could. I was POA so I dealt with her finances. Not an easy task. She forgot to pay her bills, never opened her bank statements but accused them of never sending them.
I started to do her taxes only to find papers from 1986 mixed in with current papers. Had to search thru boxes for paperwork. After three years of organizing and reorganizing only to have mom mess them up again, I knew it was time. Enough! I couldn’t do it anymore!
So we began visiting and interviewing (8) facilities . Chose a new facility where we thought would be perfect. When she was suffering from anxiety and wanted to go to ER, we took her. In the meantime, her furniture was moved to her new home. We had her taken to her new home directly from ER.
She became aggressive, and attacked her aide. My mom never would have behaved that way. She tried to escape and made it once. Her care was subpar so we moved her to another more expensive Memory Care facility and loved it.
It was a hard journey and it wasn’t easy but it was what mom needed. Yes, there was guilt, but I couldn’t do it anymore. My mental and physical health were affected.
Thank goodness I found this site. It helped to know I wasn’t alone. Everything I was going through was exactly like fellow members. They helped me through a difficult time.
Sorry my post was so long. I hope it helps others know they are not alone.
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Debsworeout Aug 2023
I can relate to what you said. My brother in Florida is on my mother's checking account , and when I was concerned with her not handling her checkbook properly , he called to check the balance ,and she had more in there than she thought. Turns out she didn't put her social security deposits in there for June or July! I then realized how bad she is getting. She came into our bedroom at 10:30 one night while we were sleeping , shined a flashlight in my eyes saying someone was in her room trying to kill her. We told her nobody is here ,go back to bed , she then said the person's in our room and when she's dead in the morning we'll know. Her hallucinations and delusions were worsening to the point where I was getting stressed , wondering if this was going to happen every night . She thought someone got killed in our back yard and was out looking for him. In her mind she's fine ,and can live on her own independently...she can't, and it's hard watching your parent go through this, but I couldn't deal with it physically or mentally anymore . I know in the long run her placement will be what's best for her .
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In our state- Ohio- The only way to get her into a N H against her will is to have a
guardian appointment through Probate Court. dlk
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I tried to call EMS on my aunt to get her to go to the hospital while I was in another state. She fussed like a child, and got angry with me. The EMS told me she looked fine to them (I don't know how they came to that conclusion) and that they can't just go hauling someone off against their will.
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Hats off to you for hanging in there for so long!

Couple things, Go visit all the care facilities near you (Or farther away if feasible) make application and get her a bed (term for facility having a place for her).

or, resolve yourself to dropping her at the ER ~ asking ER for a social worker, the social admit i.e. unsafe release ~ stand firm on your inability to continue to care for her.

either way~ Your original question was how to get her there… Have you tried making an appointment for her for something she likes… that’s exciting, like getting her hair done or going to lunch. I would do that a few times (Or just the once) and then on one of those times just keep driving to the hospital. Pull up in the ER, or at the front of the home that you have already gotten her enrolled in ~~park the car, take the keys, go inside and get an orderly to help you.

or maybe just encourage her to go for a walk with you… get her walker or whatever she uses and just start walking down the street. When she gets tired…have a friend pull up “unexpectedly” (Of course have this planned) and he’ll say, “hey, do you guys need a ride back to the apartment” and you guys accept the ride, but he actually goes to the hospital.

It’s time to get creative!! we were really good at this when we wanted
out of the house as teenagers… Lol maybe it was practice for this kind of conniving as our parents age!

Best of luck! Maybe let us know what you came up with or what worked!!!
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Cruzinup Aug 2023
Oh, also~~~ What you might be asking is~ how can I do this without feeling guilty?

And the answer is, there is no way to circumvent that other then to keep your eye on the prize which is that ultimately~ once your mother settles in, she will get accustom to the routine, and it will be better for her in the long run. And it will definitely be better for you,

And if you believe in the afterlife, or any higher essence of order, then her inner self, which deeply rooted, should be a kind, wonderful mother, she would want this for you.
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So sorry to hear of your situation. Know you are worried about Mom but please remember to try to take 30 minutes a day to exhale and cleanse your mind of all issues. Remember, if something happens to you, Mom really doesn't have anyone else at this juncture.
No point of calling 911 if there is not a certified emergency; you don't want to waste their time and materials. If she falls and is wounded or if she has a "flip out" episode call them and request they transport to hospital (hopefully, she is not a "show timer" who can put on a good act for "outsiders"): while you are calling them try to get some video on your phone of a her acting out. Follow the ambulance to the ER and once there, immediately request to speak to the ER SW on duty (show her the short videos of Mom really acting out, that will help). Tell the SW that Mom is not safe to return home (sounds like she lives in her own home, not in yours) and that you can not be responsible for her care or for going to her home and cooking, cleaning and any other chores your don for her. (could get a little "ify" here since she lives in her own house) but stick to your guns and do NOT drive her back home. Social worker will promise you the world if you take her home but don't do it! Not hospital's concern if she leaves with you. Now in the past a few hospitals have actually sent people home in cabs and they might try that so maybe get a few of her neighbors to be on the watch. If she starts to roam the neighborhood, anyone can call you or 911.

You say she has Medicaid but it is not the one she will need for LTC. I would call the county dept of health? Office on Aging, tell them you need the names of a few certified elder care attorney's because you need a free 15 min consultation re: an elderly person. You could also get in touch with your Mom's current Medicaid caseworker to get more information on the switch from home Medicaid to facility Medicaid; but an attorney may be able to give you more information about the dissolution of Mom's assets (house).

I'm in NJ also and very few standalone MCs or ALs accept Medicaid. Those that do, reserve the few available beds for their current private pay residents when they run out of money. There are many LTC facilities in NJ that have MC units (some are secured to prevent wandering). Staff in those units are required to receive special training and take continuing education to help them deal with the issue of dementia residents. Saying this so you won't be surprised when the hospital goes directly for placement in an LTC.

Wishing you peace and good luck on this journey. Please keep us informed.
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I am not sure why the ER has to be involved at all. I would interview places that will take Medicaid once Moms assets dwindle. Get on a waiting list NOW at your favorite one. Make sure the staff is aware of the truthful situation---that once Mom arrives, she may become combative and hysterical. When then day comes to move in, get your mom in the car by whatever means necessary (yes, lying), and drive her there. Involving a middle layer in this (ER) may actually cause Mom more fear and stress than necessary. I am so sorry you are facing this.
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A Therapeutic Fib is in order here. It helps you to step into her reality.
1. You need to get the house painted and she is going to stay someplace for "a while"
2. Your doctor says you have Covid or something and she needs to stay someplace away from her while you get better.
3. You need to go to (INSERT PLACE HERE)to take care of my friend. I have made arrangements for you to stay at a hotel while I am gone. They have special people who will get you your meals and can help care for you.
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Seriously, too bad she doesn't live in NE Ohio. Here, there are many NHs competing with each other for residents.
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Bring her to the ER by whatever means you can get her there. If it's by ambulance, then tell the paramedics on the phone that you are doing a 'Social Admit' for her at the hospital and cannot get her there on your own. Also that she will be a hostile transfer.

The more commonly known slang-term for a 'Social Admit' is an 'ER Dump'.
You follow the paramedics and when everyone's arrived at the ER you ask the nurse to send down a social worker because your mother needs a 'Social Admit' (be sure to use this exact term).
When the social worker comes down to talk to you, tell them that you cannot provide adequate care for your mother anymore. That you will not be her caregiver anymore. They will make all kinds of promises of unlimited homecare and resources if you take her back, but will deliver on none.
If you take her home, you are assuming responsibility for her. So don't do it.
The hospital will admit her and keep her there until they find an available bed for her in a memory care facility.
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anonymous1732518 Jul 2023
How could the hospital explain this to insurance so they could get paid?

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Yes, Feather, you must now begin to care well for yourself. You know it is time to step back from caregiving to concentrate on YOU and process all that has affected you emotionally over the last several years.

’Maintaining compassion’ is difficult day in and day out! Your mom has been blessed by you and the care you’ve provided.

As you recognize waning compassion, please see it as a signal and opportunity to make alternative care plans for mom.

Continued progress and strength on this journey.
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Hi Feathersmith, I'm sorry you are in this position. It is a tough situation, especially when mom is still with it enough to be uncooperative and unwilling.

You can't just call 911 or the ambulance for any reason, there must be a somewhat valid emergency. What worked for me is my father kept trying to put his jacket on and kept trying to walk out the door. I called 911 because I was frightened by his behavior. I told the policeman what was going on and he thought it would be best to have him evaluated because he "didn't want to be called 3 hours later to search for an elderly man with dementia wandering the streets". So off he went, and once in the ER, the next day (actually it might have been Monday, and I called on Friday night) I met with the SW and case manager at the hospital and conveyed to them the situation at home wasn't good for either of us for him to be there anymore. They held him and found a facility in about a week or so. So, you need a good reason to call 911, maybe after she falls, or maybe she wanders away, or for some other reason that you suspect she may need to be looked at by a Dr.

Once she is there at the hospital, there is a possibility that things may not go as you would like. The hospital may try to send her back home. That is a very real possibility. At that point you may have to resort to tactics that may seem unappealing or undesirable and are not easy to do if you really want to have mom placed. You are going to have to battle with the hospital case manager and you might have to have APS get involved. You are going to have to be persistent and consistent and unequivocally and forcefully state to them that you are unable to safely take care of her anymore. You may have to fight, so you are going to need to stay strong.

You can also try contacting a SW before you do all of this. You can have mom's Dr. send a referral to the affiliated hospital or health group network.

Keep us updated, there are a lot of knowledgeable people here that can help.
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Feathersmith Jul 2023
Thanks for your feedback.
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My mom did not have a serious injury, but had not gotten out of bed, nor eaten when I bought food to her. She lived by herself, took zero help and suggestions from anyone, including Adult Protective Services. They had been working with her for a few months after I alerted them to the mild cognitive decline diagnosis mom received 3 years prior.

I called 911 and reported her as unresponsive to me, laying on her left side in bed and could see her breathing. Awfully compassionate EMTs arrived and ultimately took her to the ER. Mom always believes a professional rather and me, so they had a MUCH easier and pliable woman in mom, at that time. She was not stable enough to walk by herself and without eating, they said it would be a good idea for them to find out why. She agreed with THE EMTs. Had I suggested it, there would have been NO WAY she’d have responded positively.

I stayed out of the EMTs way as they dealt with mom so she didn’t think I was ‘interfering’, even though I am POA & have medical directives. Mom has Medicare and is Medicaid pending. She eventually went to LTC from rehab from the ER.

Wishing you strength to make the call and in returning to caring for yourself.
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Feathersmith Jul 2023
Thank you, haven't gotten much feedback. I think I could have worded the title/question better, it sounds ominous. I have always been very close to my mom. When she could no longer take care of herself, I put my life on hold to live in her house and take of her. But I feel like my mom is dead, and it is increasingly hard to maintain compassion for the strange person she left behind. My mental health has obviously suffered, and now I'm developing physical symptoms I believe are related to stress. If I thought she would die soon, I would continue. But it seems she may live another 5-10 years, and I can't keep this up that much longer.
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Depending on the state Medcaid does not cover straight MC. They cover MC in a SNF and unfortunately Dementia in itself is not considered a skilled medical need for you to start placement.

This is the information we were told.
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Your giving Mom a choice and there is none. She is not competent to make informed decisions any more. If Mom has money of her own, use it to place her in a nice Long-term care facility that takes Medicaid. When her money is almost gone (2 or 3 months worth) you apply for Medicaid.

If Mom only has her SS and some pension, then I would visit some LTCs and ask questions. First do they take Medicaid. Then see a Medicaid caseworker and start the application. If Mom has no assets, it should be fairly easy. In my state you have 90 days from date of application to spend down any assets, get info needed to the caseworker and find a place for Mom. For my Mom, she had 20k. I placed her May 1st, she paid for May and June. I started the Medicaid application in April. By June I confirmed the caseworker had everything he needed and Moms Medicaid started July 1st.

If Mom ends up in the hospital allow her to go to Rehab. While there, have her evaluated for 24/7 care. If its confirmed she needs it, then tell them you cannot care for her any longer and she will need to go to LTC. Where I live Rehab and LTC are in the same building. So very easy to transition someone from Rehab to the LTC side. You can refuse to take her home with the hospital, too, just say she needs LTC but easier if done at Rehab.
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Geaton777 Jul 2023
JoAnn, in my experience (here in MN) a person has to be medically assessed to need LTC — a PoA doesn't just decide this. Doesn't seem like the Mom here is bedbound or has a profound physical illness but rather needs MC (also not covered by Medicaid). I can't imagine in my MIL's facility having someone who is mobile with advancing dementia on her LTC wing. It would be chaos. Everyone on her wing is bedbound or requires a wheelchair for mobility. It's not secured like MC. Best to have this discussion with the Mom's doctor, maybe even the social worker.
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“If there is no serious injury, can the paramedics say they can't take her against her will?”

Yes.
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ventingisback Jul 2023
You can imagine that if that wouldn’t be the case, anyone could call 911 to get rid of a housemate they don’t like.
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Based on the info in your profile... are you 55? Or is your Mother 55?

Is she on Medicare or Medicaid? They are different.

You don't give many other details... does she have a medical diagnosis of dementia?

What are her financial means... does she have more than SS monthly? Other assets? This will matter in figuring out where she can be placed.

Thanks for clarifying.
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Feathersmith Jul 2023
Mom is 80. Has Medicare and Medicaid. Has medical diagnosis of dementia. Lives off SS alone. Owns house.
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