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Mom was living alone with "mild" dementia for almost 2 years, then had household fall was not found for 3 days, hospital 6 days, rehab 4 weeks, now enhanced assisted living with memory care for 4 weeks. It's a wonderful place, non-institutional feel, nurses on staff 7 days, doctors available most days. The building is secured with a key code, but residents can freely use another door to a large, enclosed garden area. I take her walking most days on trails on the property. Right now she accepts that she is there for medical reasons, but she wants to go home as soon as she's "better." Cognitively, she is the genius in this building--she can read, write, use the telephone (with multiple tries), sometimes figure out what day it is and what time it is. In spite of aphasia and refusal to use hearing aids, she can carry on a conversation. Several times she has called or written to her friends and asked them to take her to the bank or take her home. Fortunately they did not, but one set of friends does not seem to believe she has dementia at all. They have offered to take her off the property more than once, even though I told them they are not on the list to take her out of the building. My brother and I both live out of state. I'm going back home in a few days. She is not under guardianship, but so far, she has not been cognitively able to initiate and follow through with any actions to actually leave the place on her own. But I worry her friends will try to "help" her get back to her house. Must I repeatedly call and speak to every friend to ask them not to "help" her? And what if the friends don't agree with me? Any ideas or experiences?

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Have you ever asked her "which home would you choose to go to?" I haven't experienced this but I have often seen here that when LO's ask to go home they can often mean a totally different home from the one they last left, often it's a childhood home or the one they lived in when first married and sometimes they don't even know what home they mean or simply mean their room. Sometimes just saying you are home works, though I don't know if you want to try that yet, the last thing you want to do is upset her. I doubt the residence she is in will allow someone to move her out without a plan for her care and safety. When she and her friends say she is going to be living alone in her home again and they will "pop in" or she even says her family will care for her I doubt this is going to be enough for the facility to release her. That's something you could actually say in fact, "you can't leave Mom until they (or the doctors) feel you are doing well enough to release you" if she asks what she needs to do to be released, tell her and tell her friends too if they need to feel she may go home...whatever the tasks are there must be things she wont be capable of accomplishing and I agree with the idea that having that carrot, something to work toward could make a big difference in her quality of life not to mention cooperation so I wouldn't be quick to squash her hopes and dreams but you don't need to avoid them either. talk about them, learn what they are and don't get her hopes up but don't squash them either. She may come to the realization herself that she should stay where she is. Good luck i can't imagine how difficult this must be on you and your brother not being in the same state but given that she seems to be so connected to the area with a strong social network I commend you for leaving her there rather than making it easier on you both by moving her closer to one of you. She is a lucky mom.
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Beekee Jun 2019
We would like to move her, but it's not as easy as it sounds.
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Here's an extension of this question because my dad does the same thing... asks everyday when he will be "getting out of here" and going home. He's got vascular dementia and his doc suggested we keep telling him he'll be reevaluated in a few months so we don't destroy his hope and send him into a depression. I'm wondering how everyone handles this situation. We have supportive family members and friends and I explain that we are not lying but not squashing his hope.. even if we did tell him his situation was permanent, he would still ask us everyday when he was going home and become agitated when and if we said he wasn't . He just can't process the info ... I'm fortunate that everyone will call me before they take him out. One of his friends that lives in his apartment complex even took him to the common area on one of their outings and at first I panicked ... but then we realized he did not ask to go to his "apartment" when there so it helped his friend understand the situation a little better.
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As long as facility is aware she cannot leave with others, it should not be a problem. Is it possible that she could actually go with her friends to eat out or shop or something? Maybe that is something you could allow.

Why not just have a conversation with those who you worry about taking her. Tell them she still has very good days, but some days with memory. Even if her mind was good all the time, she fell at home before and could easily have died when she lay on the floor so long. You don't want that to happen again. May solve your worries.
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Make absolutely sure that the facility knows she is NOT allowed, under any circumstances, to be taken out by anyone. And put that in writing. Let everyone of the caretakers know that. I question the facility as to not having a more secure setting for these people. As to the friends, tell them NO, NO, NO. Be professional but scare them a bit that if anyone dares to take her out, there could be legal consequences. Tell her to visit her in the facility. I think that since she is in the facility, they can be threatened with legal action if they do not supervise her so this does not happen.
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Gosh I went through this phase too. Only in my case the people who wanted to get to my mother were more interested in her money than taking care of her. They would send her emails, which I started blocking and once that was done they would send her snail mail which I interceded. They even sent a note and offered to pick her up at the airport, and stay with her in her home.... imagine, these were complete strangers!

They would also call, and eventually I had to ask them to stop calling since it caused so much grief to my Dad who would start crying every time. Eventually I even changed her phone number.

This very all very sad, as my mother through these were her friends. Eventually They got the hint, but it sure caused some difficulties.
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It's likely that the facility has clear written instructions on who is legally authorized to take your LO out of the facility. If not sure, contact the director & find out, so they can supervise who signs your LO out for ANY reason. I believe that's your legal right, if you are the 'responsible party', to designate such things. (Similar to whoever is named on a child's school record, as 'authorized' to pick up the child).
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Her friends are most likely older, too and they do NOT have the right to remove her from the premises. I would tell the staff that no one is to remove your mother from the facility!
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You know, this business about so-called friends knowing what's best for your mother infuriates me! How dare these people decide who's suffering from dementia and who isn't! They aren't doctors, or physician's assistants, nurses or even CNAs for petesake! Anyway, my cousin insists my mom doesn't have dementia even though she lives 3500 miles away and is clueless. Come take care of her for a while and see for yourself, I'd like to say. My mom is in memory care and nobody but those on a list can take her out of the facility, period.
If you've read up on dementia then you know it's progressive and worsens over time. A person can progress pretty quickly too......my mom went from a MOCHA score of 18 to a 10 in 2.5 years. Now is probably a good time to think about placing your mom in a nice Assisted Living Facility, not a memory care facility, for the long term. Look for one that has a nice list of social activities and a bunch of happy, well dressed ladies milling about. Then ask some of them how THEY like living there...its the best reference you can get. Once your mom is placed, she will be checked on frequently and you can add services as needed, ie: incontinence which is very common with dementia. What you don't want is to find yourself in an emergency situation with nowhere for her to go. Taking care of dementia patients in home can wind up to be incredibly challenging.

All the best of luck
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If you have PoA this is much more straightforward. But even if you don't, explain to the unit administrator that no one should take your mother out without your consent (probably should be in writing). Explain the situation to these friends and ask them to visit your mom whenever they can. They may be projecting your mom's limitations onto themselves and don't want to be limited as she is, so resist the idea that she may not be as independent now as she once was.
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This is very common in facilities.
You will have to meet with the facility administrator to have a secure list of only family that can take her out of the bldg. They also can put an alert on her to help prevent her sneaking out with friends. Also , at the house you can have a video peephole set up so you can see if they are actually going there. Technology is starting to handle a lot of these precautions we can make.
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Hi Beekee, my personal experience in this same situation was that the facility asks the POA for a list of people who they can release the patient to and any information about the patient. If you or your brother do not have POA you can still petition for guardianship if her doctors can declare her incompetent. It does require some leg work, but might be something to think about. Good Luck.
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A little advice, mom has been in NH for a little over a year, she still asks when she can go home ( alzheimer's & in a wheelchair) - we kept her at home for 2 years before it became too much. My mom also has some friends that think she is fine, when they visit, they get her all riled up about how she should be able to be in her own house. We tried that, after many falls, crazy phone calls from her, being afraid, leaving the stove on, ( the list goes on), her DR. told us she needed 24 hour care, so the adventure began. We already had people coming in to get her up & bathed, but she was combative a lot. It amazes me how people have opinions & think they know best, but they aren't the ones dealing with everything...

The NH has been good for her even though she is not aware & she tells me how much she hates it. She has a routine now, up get dressed, have breakfast , she can go to mass daily if she wants & there are always activities going on. Now that it is getting nice out, they go outside a lot. The main problem is she has no recollection of doing ANYTHING.... She blames me for putting her there, because I didn't want her around anymore. I feel better knowing she is safe, her meds are taken care of, she is fed, cleaned up, etc... Trying to rationalize with her is useless, her brain is broken and this is the new normal...

I hate to say it, but neither of us get anything out of our visits. There used to be good & bad days, now they all seem to be bad... She gets upset, she gets me upset, but I continue to go because I know my siblings do not.... I go more for obligation & making sure she is okay, this is not my mom, I am caring for my mother...

No one should be able to take her off grounds without approval, I would speak with the head nurse.

Good Luck
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Erinm60 Jun 2019
Thank you for putting this in perspective for me. My mom is scheduled to go to memory care July 8. I know she’s going to hate it. Her doctor signed the papers today after her yearly physical. I am feeling like Judas. But she has declined so much. Too many falls, doing dangerous things. I can’t watch her 24/7
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good advice from others. Have you thought of moving her closer to you or brother?
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Beekee Jun 2019
Working on that. Not all areas have the same resources.
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Get in Touch with ANYONE IN CHARGE. YOU are FAMILY, Who have FINAL SAY.
Period.
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You really don't need guardianship unless someone is questioning your POAs. I had no problem using mine. Guardianship gets the courts involved and at least a yearly update on how ur spending her money. Your POA is enough for the AL to follow your instructions. I would write a formal letter stipulating that NO ONE but you or brother can take Mom from the building.
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AuntieAuntie Jun 2019
Spot-on!! The whole court thing is why we are trying hard to avoid the guardianship route. We had to do it with my sister-in-law, who was completely disabled and unable to communicate verbally. Filing that report every year was a major (and expensive!) chore even though her finances were relatively simple. The court wanted it balanced TO THE PENNY every single time. If the person owns any assets or has investments, etc., the complexity would only compound.

It also might be good to try to get at least some of mom's friends on your side, backing you up. Maybe if they understood they are really doing her a disservice by getting her hopes up when it's NOT gonna happen!
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I would think the facility would not let her leave with just anyone. I'm not considered my mother's guardian but her facility called me to ask whether the pastor from her church could give her a ride to and from church services. The pastor also called me to discuss it and I gave my permission. They didn't seek out my brother or sister to get theirs. She doesn't have many friends left but I think the ones she does have know that she cannot live on her own anymore and the family is well aware that she can't. The staff at the facility seem to know that it's okay to let her go with her children, grandchildren and the pastor and I haven't been asked about anyone else.

I agree that if any of your mom's friends should decide that she should go back home, they should sign something taking full responsibility for her from that point on. Sad to say, they won't want to take on that kind of liability - not many people would.
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At the memory care facility my mom is in, I gave them a lisit of who was allowed to take her out. My step sister is not on the list, she called and stated she was going to take mom out to lunch. I didn’t tell her she wasn’t on the list, I just told her mom had to walk into the facility on her return and if she refused to go in, don’t call me she is now your responsibility. She decided to bring lunch into the facility.
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Lymie61 Jun 2019
Lol, that was perfect!
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Silly question... does your Mum have her house keys?

My friend's Mum (new resident in MC) kept asking to go home, kept calling her sister to spring her. Her older sister arrived to visit one day & the MC Manager let them go try. My friend lives many hours away, was notified but pretty worried!

Lasted less than 48 hours as the Mum was distressed & confused & the sister unable to get her to eat, dress, bath etc. Both had the insight this would not work. Returned to MC.

They made a 2nd attempt. This one was only a few hours. The Mum got to her house & then asked to go home. Where's home? "Where I live now". She had adjusted.

Others tell me having the familiar photos, cushions, trinkets etc in the new home helps.

I think your lovely new habbit of walking the gardens will be something you both enjoy. This will start to feel 'like home'.

Fresh air & sunshine, being in nature, good company & a chat. That's what a good day looks like to me!

She is lucky indeed to have such a loving daughter.
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Perhaps you could tell the difficult ‘friends’ that 'if they take your mother out of MC for any time at all, they will be legally responsible for her safety - that they should have arranged in advance for 24/7 attendant care. Your attorney will be following this up with civil action if she comes to harm.' Add some sites to provide information about dementia and the risks. Try a group email, and make it sound very formal and scary.
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I’m sure the Memory Care has your Co-POA. Send them a note stating that your Mother is not to leave the facility without one of the POA’s permission - or just state that she is not to leave the facility, period. If you want to take her out, when you are there, you would still be able to.
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Well my mom said she graduated from memory care and was better.
No.

You will will prob need to look into Guardianship if you don't have one. If no legal instrument on file, well...
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Beekee: You received lots of great feedback and suggestions!! I agree with Sendhelp & Cleanoutsue....I'm very sorry you're going thru these challenges. My mom (93) has dementia (14+ yrs); it doesn't get better. My dad (92; passed 11/2018) had COPD; mentally sharp, BUT was very, very difficult. I notice my parents and many elderly "always want to go home". Family/caregivers want loved ones to be happy & to go home...but when "their" daily reality dictates it is NOT safe, realistic or in the elder's best interest to live independently regardless of what they think, say or want...that's when the hard fight begins. My parents' single family home sat unoccupied for 6 mos (mom had mini-stroke & dad diagnosed w/ severe COPD all within a few months). Frail as he was, my dad "INSISTED" he/mom could return home and live independently & he could still drive his car.(doctor clearly told dad he couldn't drive anymore). Dad needed oxygen 24/7, 95% blind in left eye, needed to use a walker & couldn't walk more than 10mins without being winded - mom needed 24/7 care; she couldn't feed, bathe herself, walk, etc. YET my dad still insisted. By design, my sister lived 2 only blocks away from mom/dad in her own home w/her hubby. (this decision was made 12 yrs prior when my only sister moved 2 hrs away & mom/dad decided to follow her) I advised my dad & sister to sell my parents' home asap upon falling so ill as they could not / would not be able to return...sister & dad chose to be in "denial" and no matter how many times I brought topic up, parent's house was unoccupied for 6 mos.... until late 2017 when their home was "broken into & ransacked" (BTW: After the home breakin, my hubby/I leaped into action, spent every wkend for next 2 mos organizing, packing, prepping parents home for sale....it was 100% clear & VERY evident, that my parents were "totally incapable" of living on their own; it was a nightmare for me/my hubby - I fought daily with my sister, her daughter and my dad. Dad got into huge fight with my sister & demanded to they move & live with me & my husband Nov 2017 - this was unexpected; what a mess!!! I quit my corp job to become their full-time caregiver....a very steep learning curve! If all your mom's legal paperwork is Not in place, I STRONGLY suggest you & your brother focus on that asap. With you both out of state, you'll need Medical & Legal POA, does mom have a will or trust in place & is it up to date?, who is/will be the "Social Security Payee" for your mom, do you both know what your mom's "end of life" wishes/decisions are? (YES-NO to various life support measures; feeding tube, etc). Suggest you/brother be on ALL her bank accounts, credit cards, investments while she is still able to give her verbal & written consent...otherwise, you'll likely encounter major headaches trying to access/step in to help on mom. (we sent my momj/dad $500.00/monthly to help them; I discovered after they moved in & I starting adding myself to all their accounts, my dad was spending $200.-250./mo
on Publisher's Clearing House crap - Ugh!
The time and luxury for what "friends" (even what other family) thinks has passed ....unless a person feels and IS fully responsible/accountable for the full weight of your mom's well-being/care, all they have are "Opinions". (I had many fights w/my one & only sister. Regardless of the details stated in my parents trust - Sadly, my sister insists on doing & trying to get her way.....as my parents explained to me many years ago; which is why they made me the "Executor"). It's up to you & your brother to work together, plan now and help manage your mom as you both accompany her thru the various stages of her dementia. Praying for you, your mom and family - sending you good wishes on this journey!!
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Beekee Jun 2019
Thank you for the voice of sanity!
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If she is in Memory Care the facility should have a list of people she can leave with. That list is the one they must adhere to. I would check with the facility. They charge for and are staffed to do this. They are responsible not to allow this to happen in most instances, so call the facility and make certain of their rules as regards this. If there is no POA or guardian this is now the time to do it, because if the time is not here when this is needed it is certainly coming. If there is no dementia then your mother is in all likelihood free to go right now. If there is dementia then it is time now that the paperwork is done to protect her. I do not understand what your plan is for the end of this month's time?
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Beekee Jun 2019
In December 2018, mom did sign updated medical and legal/financial POAs making my brother and I equal co-agents. In March 2017, she was diagnosed w dementia (vascular or mixed, due to cerebral small vessel disease) by a practitioner she has been seeing since 2011. She is not under guardianship--perhaps that's the next step. I was hoping she would just stay in memory care for a while because she can't figure out how to leave--when we walk out to the garden, she can't find her way back to the building (visual-spatial scores have gone way down).
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I listed who could take Mom out of the facility. If not on the list u provided, these people should not be allowed to take her. When it comes to key codes, only family should have them. Visitors should have to wait until the receptionist beeps them in. Same with going out.

I think Mom should stay where she is if she can afford it. If you have financial POA you can sell her home to help pay for her care.
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My Aunt passed many years ago. She was in a small assisted living home 6 beds.
When I visited in my RV, the nurse and staff there encouraged us to take her out to lunch and for a ride in the RV. (She had a lifestyle of traveling in her own RV until her husband passed.)

She enjoyed it, was elderly @ age 90, somewhat frail. When we drove her past her old house, at her request, she looked so confused, could not answer if that was the house, did she remember it, etc. Dropping the subject, we took her back to the care home. . This was a short two hour visit, as we were just passing through her town.

It is common that persons with dementia want to go home.
Visitors can be uninformed and ignorant.
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jacobsonbob Jun 2019
This illustrates quite nicely something that has been said on this forum before--people having dementia often think of "home" as somewhere from their childhood, and not their former residence as an adult (which, as in this case, might not even be recognized).
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Talk to the facility about these well-meaning folks and alert them to the fact that someone may try to "spring" her.

If they say they can't prevent mom from leaving, ask that anyone taking her out sign a document indicating that they are taking full responsibility for any outcomes.

If these folks take her out and return her home, I'd not lift a finger to help in the event of another "emergency". I'd make it abundantly clear to them that they would be responsible for mother's care. And that they would be liable in case of any harm that comes to your mother.

Have you a family lawyer who could send a strongly worded letter to this effect?
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Cleanoutsue Jun 2019
I have been through this to the point I was pulling my hair out..Unbelievable how stupid, and entitled these people are...We even had one family niece tell my us she would do what she wanted...when she wanted..Mind bending that lack of consideration of the true circumstances makes everything so much more painful..I FEEL your situation...💝
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I should speak to the staff. Your mother's friends have to check in, and then have to use a key code to exit the building, do they? As long as there are specific points at which entry and exit are checked, it should be possible to monitor who's leaving the building, and if your mother's not on the list she won't be going without authorised escorts.

The friends who don't see her dementia - what do they know about dementia? I don't mean that rudely; I mean, might it help to give them some kind of information leaflet (try alz.org) that will get it into their heads that there is more to dementia than not remembering the name of the President.

You might also mention, in a mild FYI way, that hypothetically any well-intentioned persons who were to do such a kind but misguided thing as to take a person from a memory care unit back to her home and leave her there would be a) exposing their friend to really serious risk and b) exposing themselves to really serious trouble.

Do encourage them, though, to speak out about *why* they feel she'd be just fine alone at home and this is all a big fuss about nothing and Not Fair. If you can get them to explain their reasoning, you'll know what they're misunderstanding.
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Beekee Jun 2019
Thanks! I just get exhausted thinking about this.
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That's tricky. I suppose, alerting the staff that this may be a possibility - and provide a picture of the friends who might be taking her off campus could be a good step. And maybe a few more conversations with these particular friends, letting them know that mom has declined and it just isn't really safe to be taking her out and about - but they are welcome to come visit for an afternoon and go for a walk on the grounds. Also letting them know that taking her back home, even for a visit, would be very detrimental and set your mom back in her adjustment.

I wonder if their lack of acceptance has more to do with them not wanting to admit that their friend, and also they, are aging and just not the same as they all were 20 years ago?
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caringkarren Jun 2019
I do hope her friends can understand! Sound advice indeed.
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