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Beekee Asked June 2019

Mom 81 w dementia is new to memory care and wants to go home as soon as she's "better." I worry her friends will take her to her house.

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?

Mfreemam Jun 2019
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.
Lymie61 Jun 2019
Lol, that was perfect!
YukiBob Jun 2019
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!!
Beekee Jun 2019
Thank you for the voice of sanity!

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JoAnn29 Jun 2019
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.
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!
calicokat Jun 2019
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?
caringkarren Jun 2019
I do hope her friends can understand! Sound advice indeed.
Countrymouse Jun 2019
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.
Beekee Jun 2019
Thanks! I just get exhausted thinking about this.
Beatty Jun 2019
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.

BarbBrooklyn Jun 2019
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?
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...💝
Sendhelp Jun 2019
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.
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).
JoAnn29 Jun 2019
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.

MargaretMcKen Jun 2019
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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