HELP. How do I get my mom to leave her house? Tried before and failed.

Marianne*

Hi there, 

I really need some ideas on how to get my mom out of her house and in AL with the least amount of upset and drama.  In Sept.2020 we tried this and she was a nightmare.  The place made us pay $7,000 to have someone stay with her to make sure she didn't walk off.  She was 2 hours away in my brother's home town and kept threatening to leave.  She would try to walk off.  She was gonna walk home.  She threw tantrums.  I picked her up and brought her back home.

The dementia has progressed since Sept.  Half of the time she forgets her meds are in a safe and instead of getting daily calls about needing the combo I get frantic calls over not knowing where her meds are.  Someone is there every AM/PM to do meds for over a year but she doesn't remember.  She forgets my dad died and will call sometimes asking where he is.  She's a retired teacher and a couple weeks ago a neighbor saw me over there and told me that she's been going around the court asking for the student she needs to tutor, her school books back, and her house key she things they have; neighbor said last time she did this was at 9pm.  She broke her foot 3 months ago; I've heard at least 5 different stories for how it happened.  It's time.  But she's the drunk who can drive.  

Whenever I bring up AL and moving she says she's not leaving her house.  She'll be dead first.  The only way she's leaving is when she doesn't know who she is.  Trying to reason with her is pointless.

I'm currently going through the steps of having her move into AL in our area.  It's not as nice as where my brother lives but I've been her person for decades and having her 2 hours away with him doesn't work for me either I've learned.  

How the hell do I get her to leave her house?  Last time we told a fib about something wrong with the gas line, she had to medicated due to agitation, and she was threatening to leave and walk 2 hours home.   

Lying isn't the answer.  Medicating her isn't the answer I don't think.  We will be selling her house the week after she moves - sometime 2nd /3rd week of May.  I'm thinking of telling her that it's "time" which I already do and that we've sold her house.  She is going to be devastated and angry but at least then she'll understand that she can't leave AL and go back home.  

Does anyone have ideas on how to handle this situation better?  I don't know what to do.  A caregiver that helps with meds and spends some time with her is being fingerprinted and TB tested so she can be a "companion" when my mom will be difficult.  

Any ideas/suggestions are so appreciated.  My brother is pretty much hands off and no help except paying her bills.  I'm alone in this.  Thanks

harshedbuzz

Marianne* wrote:

Hi there, 

I really need some ideas on how to get my mom out of her house and in AL with the least amount of upset and drama.  In Sept.2020 we tried this and she was a nightmare.  The place made us pay $7,000 to have someone stay with her to make sure she didn't walk off. 

It sounds like this was a hospitality model AL and not a higher level care MCF and not an ideal fit for her.

She was 2 hours away in my brother's home town and kept threatening to leave.  She would try to walk off.  She was gonna walk home.  She threw tantrums.  I picked her up and brought her back home.

A well chosen MCF will have dementia trained staff who will be able to validate and redirect her behaviors. It will be secure so that she can't leave without an escort. Often such facilities will ask the family to not visit or call for a week or 2 so she can settle in and learn to rely on her team of caregivers. 

The dementia has progressed since Sept.  Half of the time she forgets her meds are in a safe and instead of getting daily calls about needing the combo I get frantic calls over not knowing where her meds are.  Someone is there every AM/PM to do meds for over a year but she doesn't remember.  She forgets my dad died and will call sometimes asking where he is.  She's a retired teacher and a couple weeks ago a neighbor saw me over there and told me that she's been going around the court asking for the student she needs to tutor, her school books back, and her house key she things they have; neighbor said last time she did this was at 9pm.  She broke her foot 3 months ago; I've heard at least 5 different stories for how it happened.  It's time.  But she's the drunk who can drive.  

She sounds as if she needs 24/7 supervision. I would make the move sooner rather than later; you don't want a well meaning neighbor to call APS because she's gone walkabout. 

Whenever I bring up AL and moving she says she's not leaving her house.  She'll be dead first.  The only way she's leaving is when she doesn't know who she is.  Trying to reason with her is pointless.

This is rule one of the cardinal rules of dementia caregiving- one does not try to reason with a person whose brain is damaged and has a broken reasoner. 

It's best to make the arrangements and then do the move without consulting the LO assuming you have the legal authority to act on her behalf. I told my dad he was going to a fancy private rehab because his doctor wanted him to get some intensive PT to get him steadier on his feet. 

I'm currently going through the steps of having her move into AL in our area.  It's not as nice as where my brother lives but I've been her person for decades and having her 2 hours away with him doesn't work for me either I've learned.  

I hope it's Assisted Living for Memory Care, otherwise with her progression it's likely to be a bad fit. 

How the hell do I get her to leave her house?  Last time we told a fib about something wrong with the gas line, she had to medicated due to agitation, and she was threatening to leave and walk 2 hours home. 

I told my dad he was going to see a new doctor. Perhaps you could take her "out to lunch" and slip away while staff introduces her to some of the more outgoing residents.

Lying isn't the answer.  Medicating her isn't the answer I don't think. 

Both may be necessary. Instead of lying, consider it telling her something that will relieve her anxiety around your decision to move her.

We will be selling her house the week after she moves - sometime 2nd /3rd week of May.  I'm thinking of telling her that it's "time" which I already do and that we've sold her house.  She is going to be devastated and angry but at least then she'll understand that she can't leave AL and go back home.  

She's not going to understand. She doesn't remember her husband is dead, she's surely not going to hold onto this new information for very long. This sets you up for a situation where you repeatedly remind her you sold the house while she gets to experience that loss for the first time every time you explain it. 

Does anyone have ideas on how to handle this situation better?  I don't know what to do.  A caregiver that helps with meds and spends some time with her is being fingerprinted and TB tested so she can be a "companion" when my mom will be difficult.  

This is a great idea. Having mom's regular caregiver as a visitor should help her transition more easily. That said, my dad was h*ll on wheels and never needed a sitter at his MCF because the staff were able to validate and redirect. We did increase his medication in the months before he moved, but he was still really angry with us initially. 

Any ideas/suggestions are so appreciated.  My brother is pretty much hands off and no help except paying her bills.  I'm alone in this.  Thanks

My suggestion would be memory care. Plan for the level of care she needs when she's struggling rather than selecting a place for her at her best.

HB

Marianne*

Thank you HB for the response.  The AL that we tried in Sept did have a MC as well.  The area is by Sacramento, CA and there are a lot of options.  I live in Merced, CA and those options don't exist here.  I've found an AL option in the area that she and I both live in and have for decades pretty much.  It's just that the same nice options aren't offered. 

I don't think it's time for her to be locked in a MC unit.  She's just scrappy and has fought for where she is and what she has in life.  So, she's gonna fight to stay in her home cause that's what she wants.  But, like I've said, it's not what's best for her.  I've actually thought of calling APS myself to get some support that it's time for her not be living on her own alone.  

The problem with lying about the house is it didn't work before.  She will know that there's nothing wrong with her house.  If the house option exists she's going to keep on with "I'm going home".  I've already told her that when she broke her foot that APS called me to investigate.  I also told her recently that APS was called by neighbors who are worried about her when she comes to their door confused.  I think if I make something up again about her house not working and that she needs to be out of it for a bit she's going to understand what's happening.  Also, her bed, clothes, etc will be there.  She's going to know.  She's not that far gone and that's why I'm saying MC isn't quite right yet.  That being said, it's going to be a sh*t show.  

abc123

If you don’t take control of your Mom there is a strong chance that something terrible may happen. She should not be making important decisions because her brain is damaged. Her being scrapy is totally different than being of sound mind. I wish you luck.

King Boo

Mom did not succeed at the last placement attempt because her care needs require the dementia specific care of a Memory Care, not the 'supportive' model of an Assisted Living.  Until this is recognized, you will not be successful with facility care.  

That ship has long ago sailed, as it has for most board members.  She was an escape risk from an unmonitored AL model.  The behaviors you describe are not that of an Assisted Living resident.

Many place at a time of crisis, such as after a hospitalization and short term rehab stay.  Be ready with your choice of Memory Care or nursing home for discharge planning, there is no time to research at time of need. 

King Boo

You will have no success with her care until you realize her behaviors are entirely appropriate for MC.

It's hard to let go of the dream of AL but at this point, she has already failed at AL because it was below her care need level.  AL puts her at risk, it's not monitored enough.'

Chasing function at MC is a constantly moving target.  Don't worry about the other residents, look at how they can provide care, redirection, validation in a dementia specific manner.

You don't tell her about the sale of the house, you're just 'taking care of everything'.   She is no longer able to constructively process information, including "The Conversation" about the move.   She's staying at MC or the nursing home 'till you're stronger' 'till the weather is better', while the plumbing is fixed, etc, etc.  

Suzzin

I am just about where you are. My parents have been "thinking about" moving to a retirement community (with AL and MC) for years, but they refuse. The two of them, with my daily support, are managing in their own home but they are one slip away from needing a lot more help. I'm trying to get them to move to a very nice place with graduated levels of care. Sometimes I can get my dad to mostly agree, but mom with AD will flat out refuse. She still knows who we all are, is mostly able to participate in conversations and other activities, and will also insist that she's just going to walk out and die on the highway if we make her stay in a new place. And when push comes to shove dad will refuse as well. I know the usual recommendation is to just make them do it, but  I never could make my parents do anything at any point in my entire life!

Marianne*

Thank you to all of those who've responded, even the ones who point out I'm in denial about MC.  I'm just not understanding how someone who is able as she is must be put in MC.  

She does her laundry, dishes using the dishwasher, has a clean home, gardens, can use the microwave correctly (what messes her up is taking the temperature of her micro dinners; she messes that up and throws them away.)  She can use a phone book; the phone, and her TVs.  One problem with the TV is she's afraid of them being plugged in so she'll unplug everything and then in the morning try to get it going again but she messes it up.  She mostly knows people's names, sometimes she'll forget.  She walks in her court and never gets lost.  She can walk to her mailbox outside of her court and doesn't get lost.  She locks her doors and doesn't wander; she's never been "lost".  

So, based on all of that, it's hard for me to see her as having to go in a locked MC unit.  I just need her to understand that it's time to live somewhere else where she has more social interaction and support for her short term memory loss.  

harshedbuzz

Marianne* wrote:

Thank you to all of those who've responded, even the ones who point out I'm in denial about MC.  I'm just not understanding how someone who is able as she is must be put in MC.  

Perhaps you don't want to admit it. It's a heartbreaking thing to admit that a LO needs that level of care especially when that LO has anosognosia and doesn't appreciate their own cognitive shift.

She does her laundry, dishes using the dishwasher, has a clean home, gardens, can use the microwave correctly (what messes her up is taking the temperature of her micro dinners; she messes that up and throws them away.) She can use a phone book; the phone, and her TVs.  One problem with the TV is she's afraid of them being plugged in so she'll unplug everything and then in the morning try to get it going again but she messes it up. She mostly knows people's names, sometimes she'll forget.  She walks in her court and never gets lost.  She can walk to her mailbox outside of her court and doesn't get lost.  She locks her doors and doesn't wander; she's never been "lost".  

Yet. 

A neighbor has already reported her turning up at his house at 9pm. Some might consider this wandering. What if the next time it's to the home of someone she doesn't know? Or if she's mistaken for an intruder? 

There was a woman with ES dementia locally whose daughters saw her daily. DD1 was an RN who worked a 11-7; she gave mom her meds, made sure she had breakfast, a lunch prepared and was ready for the day. DD2 was a teacher who collected mom on her way home around 3; they ran errands and had dinner before she took mom home and made sure she got her evening meds. One night mom left the house for some reason; her body was found the next morning by someone walking a dog. She'd never wandered previously.

So, based on all of that, it's hard for me to see her as having to go in a locked MC unit.  I just need her to understand that it's time to live somewhere else where she has more social interaction and support for her short term memory loss. 

This isn't easy for anyone. I sincerely doubt you will succeed with any approach that includes "support for your short term memory loss". If you've not read up on anosognosia, it  might be useful to google the term.

I can appreciate that it's difficult to tour a MCF where there are residents who are further on the dementia journey than your LO is, but this is the nature of a facility that allows residents to "age in place". When my aunt first went to her MCF, she was so adept socially that she spent much of the day in the AL activities area but did her meals and evenings in MC. Perhaps you can find a place that is willing to be flexible. 

May flowers

My experience visiting the MC my FIL is moving to is it really isn’t locked down like I expected, residents can walk around the facility and courtyard, they just can’t go off the grounds (it’s fenced). They can come and go from their rooms as they please, they have choices for meals, activities every hour that help boost memory and lots of socialization. I saw people who appeared to be pretty highly functioning there. Some of them did activities with the AL residents during the day.

The thing that is scary about dementia is how fast things can change. My FIL was where your mom is a few months ago, and was able to do everything your mom is doing. It seemed like a matter of weeks that he was no longer able (or quit trying) to do those things. Taking meds was the first to go, the  he quit trying to warm up his meals and ate junk food all day. The move to our house really set him back, I think he bumped to the next dementia level with the change.

I think a lot of things people with dementia can do is because of muscle memory - familiar surroundings with familiar tasks. Things my FIL could do at home he is unable to do here because his lack of short term memory makes nearly impossible to remember where things are or how to work them without step by step guidance. For example, My fridge is exactly like his old fridge that he could get water from with no problem. I have to show him every day how to get water here.

He hasn’t gotten lost walking in our neighborhood but we won’t  risk having him do so without supervision because we have seen him get turned around in our living room and can’t find the bathroom. It rarely happens but it only takes once. He is just beginning to forget who people are but he is not looking for things or people that don’t exist anymore. That would be a warning flag. If someone is that unaware of their surroundings and timeline, i would think it would not be a huge leap to getting lost.

Anyway, if you are convinced AL is the best fit, I would consider a facility that provides both AL and MC. It might make things easier down the road than having to move her again. Best wishes, it is a hard road

Marianne*

MC in my area isn't that great.  There's only one choice and I really didn't like what I saw.  My brother and I both agree that she should be by one of us and not in the middle as it will be difficult to see her and be present in her life.  

I'm really torn.  Too boot, my brother won't speak with me since we BOTH decided she should leave the AL in his area in Sept cause it wasn't working out.  He wants this to be done.  That's what he cares about.  I don't know what to do.

Iris L.

Marianne* wrote:

  I don't know what to do.

---

I suggest you read several introductory threads of new members like yourself, and read the advice given.  Then read how the newcomers responded after a few days or weeks.  The members here know what they are talking about because of their own experiences and their own mistakes.  A lot of this is learning from others' mistakes.  

Iris L.

King Boo

When you say you didn't really like what you saw, make sure the problems were actually quality based, and NOT based upon your upset at the level of function of the residents in the facility.   It's kind of a shock when you first visit.  Once you settle in, you get to appreciate the residents you cross paths with and their caregivers.  

Look at a non-profit CCRC to compare with the presumably self standing MC you saw.  

I beg you - I know it's really, really hard to see your Mom like this.  But right now your insistence that she can live in assisted living is what is working most against the situation.

She can't do her own medication, is disoriented as to time and place, looking for deceased persons, former students from another era, all late at night.  She's not feisty, she's disoriented and agitated.  And not having a good quality of life because of her dementia in a setting that is beyond her skill set.

Your last facility wasn't being mean or incompetent to insist you pay for a 1:1 aide - it's because she isn't appropriate for assisted living.  Most places would have insisted she leave for Memory Care.  

My LO squawked loudly about 'all these crazy old people' when first moved in.  And proceeded to thrive in a scaled down setting, with exact meal and medication times; with anxiety medication to settle a chronic problem.

I really do feel for you, because I was you, 10 years ago.  I sat in the car and sobbed with my kids in their carseats when I realized my cozy dream of my LO in their AL apartment doing activities was no longer possible.   What helped me realize this?  Chatting with the admissions coordinators at CCRC's - two or three sentences in, they would stop me and tell me "those are the hallmarks of the need for Memory Care."

Icried again, but this time  in gratitude 2 months later when we found the MC which treated him with respect, appropriate care.

You cannot have a conversation with Mom and expect agreement to the move.  It becomes saying the best thing to get her there, with the least amount of upset.

towhee

Marianne this is hard. You are in the "but she can do this fine!, but, well, she can't do that..." stage. Unless we can be with our LO 24/7 we often have no idea of just where they are and we really don't want to believe in our heart that they can't be what they used to be. There is a saying that we should erase the belief that "Alzheimers equals memory problems" from our minds and replace it with "Alzheimers equals brain failure", and that like an ice burg there is a lot we don't see. I remember back when my LO was in the very early stage. and I do mean early, we went to a local pharmacy to shop and went to get our things separately as usual. Suddenly my LO appeared walking very fast down the aisle obviously in distress, saw me and said "thank God, I was so scared, I didn't know where I was or why I was here" Something like that didn't happen again for two years, but I knew she was no longer safe to be on her own outside her home, and only for limited periods inside her home.

Your mother is wandering in time, you have been told that by the neighbors. At some point she will be in a period in her memory where she no longer recognizes where she is, and she will wander physically as well. You know she is no longer safe, you have made the hard decision to move her. Now you have to grieve her loss a little more and accept that she is incapable of understanding why she has to  move. It will not matter to her that you have sold her home, she will still want to go home, no matter how many times you tell her she has none. Telling her will only cause her anger and grief. She is no longer capable of understanding your decision, agreeing with your decision, or granting you forgiveness or absolution for your decision.

She does sound like she would enjoy the activities available in an AL. But you are also moving her for her safety. ALs and MCs differ a great deal in what they offer, in a perfect world you could find a great fit for your mom, someplace that might not be as close, but that would be better for her. Unfortunately we don't live in a perfect world, we just have to do the best we can.

One suggestion- Tell her it is temporary, and don't move her furniture yet. Store the furniture, and give her a generic room with a few family photos.

Now- a couple realistic things about ALs. One-it is not about care, it's about liability. In other words money is the bottom line. If a facility has a resident who wanders out and gets hurt they get bad publicity, the state investigates, and they likely get sued. No facility wants people who are "exit seekers". Sometimes however they need to fill beds, or they might truly believe they can handle someone. For most of the residents, most of the time, an alarm system on the doors is enough. They will also medicate anxious exit seekers and they don't always ask the Health care Power of Attorney for permission first and in the fine print of that contract you sign there will be a clause that says they can require private sitters. If your LO makes it to the parking lot it is a good bet that you will be given 30 days notice to find them someplace else to live and you have to provide private sitters until your LO is moved. I've been there, its not fun.

Having a companion be with her is a good idea, but you need a back-up plan, and you are selling her home, so it would be a good idea to look at other facilities with better security.

This is such a hard place to be, I remember trying to decide between 5 different ALs and MCs and how disappointing it was when the first one did not work. I do wish you well-

May flowers

Marianne, I’m sorry the MC near you isn’t good. How close is the nearest MC or combo AL/MC facility that you are comfortable with? Is there one that is close enough you can visit once a week? It sounds like she can still communicate with neighbors so maybe in a good facility she could make friends. 

I was talking to my friend about how often she visits her mom in a MC and she said every 2 weeks, the visits kind of upset her routine and they found it was better this way.

Is bringing in a home caregiver a possibility while you work this out? We hired a 24/7 licensed caregiver for my MIL when she had cancer (with involved her cognitive function as well) and it worked out well for her, but it was pretty expensive. 

King Boo

"I really didn't like what I saw" re: your MC.

Were the problems care specific?  Decor specific?

Or based upon the level you perceived of the residents?

Let's face it - it's not a blast seeing a bunch of confused, deteriorated people at first.  Once you get over the shock, look deeper.

Are residents being treated patiently?  With respect?  Or mocked and laughed at - or impatient?

Are the activities dementia specific?  Do they spend money on staff training or on fancy chandeliers and cabbage rose wallpaper to entice reluctant family?

What exactly do you think a nursing home resident and a Memory Care resident should be like?

Because what you have written yourself describes a person more than qualified over the threshold of Memory Care.

Do you think her last AL billed you $7000 for extra care just for kicks?  No - it was because under their AL model they could not meet her high demand dementia needs.

This SUCKS - I have been there.  Holding onto the rosy dream of Mom or Dad in their own little AL apartment, getting some 'help' - and experiencing that horrible, sinking feeling when I realized he needed far more supervision than an open model AL.

You place for the worst day, and remember this disease goes only one way - worse.

Do AL again, her time will be very short.  People in AL do not want to be around another resident who is confused, disoriented and looking for deceased persons.   There can be a sort of 'pecking' order at times.  It's also unintentionally mean to put a person in a place where they cannot function, it stresses them out.   AL is a lot cheaper than MC, but it is what it is.

What does a typical AL resident look like?  One who does OK on their own; can self entertain; be more or less socially appropriate.  Eat on their own; come for meals on their own; only needs occasional staff support like to be given their medicines, or a room check for a day or two after a hospitalization.  Whose whereabouts do not need to be accounted for 24/7.

Some facilities have what are called Memory cares in disguise.  Ours was a 'high acuity AL' which was full of what were MC resident.  It was NOT regular AL - of which there were 3 levels preceeding this one.  

My LO spoke about being with 'all these crazy old people' but this did not negate his need to be there.  I worked it - "yes, you are so much stronger, healtier, younger, more handsome, etc, etc." 

It is also important to realize the time for rational conversations with your Mom is mostly in the past.  It becomes about saying what will get things done most efficiently.  "You're coming to visit me for a week" "You're staying here until you get stronger; your apartment gets fixed, until the weather is better".

Otherwide, it will all go down when Mom has a hospitalization and you are scrambling from there.  Common for many, less than ideal if you have other options.  Good decisions are tough in a crisis. f

What do you do?   There have to be other MC.  Sometimes you need to expand your travel radius.  We were at 30-45 min away, not ideal, but the facility was perfect for the current and future care needs.   Look at non profit CCRC's, they often have a different care philosophy.  Look for a place that also has a nursing home if possible, it gives you a certain possible flow of care as mom progresses in the disease, has temporary setbacks, etc.

Talk to your Certified Elder law attorney (www. nelf.org) to make sure your paperwork is in order and financials lined up and ask them about area facilities - they often have the inside information.

And let go of the AL dream.  Right now, that is your biggest obstacle.

Marianne*

Thank you for all of your responses.  It's given me a lot to think about.