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Mom is 73 and was diagnosed 5 years ago. She still recognizes people and functional but her short term memory is shot and it is clear she shouldn’t be on her own let alone drive.


my siblings and I all tried having her live with us or at least rotate between us. We begged her to sell her house after my dad passed away over 10 years ago. She refused and it was so difficult to take care of her since we live far from her. She is stubborn and difficult in general and has a ego about being a superwoman. Dementia has been devastating because she was always so very independent.


we somehow convinced her to sell the house and we set her up in a nice independent living facility. We furnished it and made sure everything was really nicely set up. As soon as she walked in she freaked out because she saw older seniors. She freaked out in her apartment but eventually calmed down when she saw her things and how nicely it was setup. She has to quarantine for 7 days because of covid after that she can walk around.


2 days in her depression has set in and she keeps saying she will pack her suitcases and leave. Her brothers enable this behavior and go up and down with her. They have always been extremely toxic and we have severed ties with them. My mother is just stuck on them and she doesn’t care her children have struggled to get her to this point. We love her and want to help her but her egotistical behavior makes it so difficult.


how do I help her calm down? I am afraid her brothers will try to pick her up and give in to her demands of an apartment and just leave her. Any kind words would be appreciated.

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Apparently there is dissension in the family about how best to handle all this. Your poor Mom was diagnosed very young and with very severe disease. I am so very sorry. Your Mom's "behavior" is excusable, of course; she is not in control of her faculties. The behavior of other family members is more problematic.
Who is the POA for your Mom? Because that is quite honestly, in the case of disagreement, the only way this can be handled. The person who is either POA or guardian now makes the decisions and the others should be asked to step aside and hold their peace. The facility will have advice. It is to be hoped that the POA will follow that advice. Family confusion and family disagreeing openly in front of Mom will leave her with false hope, and twisting in the winds of change. She needs time to adjust.
It must be accepted that she may NEVER adjust. But that this is best for your own survival and in order that she is safe and children can live their lives without this disruption.
If you need family mediation drop a line to me by private message and I can give you contacts to reach out to for guidance in your area.
Otherwise, I would say that family should meet, should decide to put the way to address this directly in the hands of the POA no matter the disagreement. And I would step away.
This early onset dementia has to be a torment for you and for your Mom and for all the kids. No two humans will agree on exactly how things should be done now, and that is why it is best to try the path of the POA and to band together. If that POA wishes to withdraw Mom and care for her, then I would say that I myself could not in good conscience condone nor enable that; but short of that I would try to work together with the facility and follow their instructions. Most allow no visits for the first several weeks; it helps with adjustment.
I am so sorry. Recognize that not everything can be fixed and not everything can be agreed upon.
I sure do wish you the best and hope that you will update us.
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Millyme Mar 2022
Thank you AlvaDeer. This is so excruciating . We are devastated and so is she. She is so stressed and the more stress she has the worse her disease gets. I wouldn’t wish it on my worst enemy.
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Why would you have mom living in Independent Living, alone, with no help, when she's 5 years in to a dementia diagnosis? She's free to leave or have her brothers come get her out of there if they so desire. An elder with dementia needs direction and help, to be told what to do and to have a routine to follow every day. To have a large level of independence is not suitable for them because they'll feel lost, confused and anxiety ridden, which is probably what you're seeing now in mom. I'd say give her a chance to adjust, but I think she needs more....perhaps an aide or caregiver to stay with her for a large chunk of time during the day to help her out and provide companionship. Is there Assisted Living on the premises you can look into?
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AlvaDeer Mar 2022
I so agree with you, Lea. It should be a higher level of care. But that's pretty much on the POA to recognize. Input can be given, but leading the horse to water doesn't always make it smart enough to drink.
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Talk to her doctor about Seroquel. My mother, same as yours, increasingly frantic, walking to the point of getting a stress fracture in her ankle. The facility suggested it, I was hesitant but after talking to my own doctor about the safety of it, I decided it might be for the best. It made a difference. She's still unhappy (vascular dementia and no longer has the ability to know she can not care for herself, she thinks she just mowed her lawn and drove her car but reality is she hasn't done those things in 6+ years) but a lot less frantic. I wish you the best.

I just saw that your Mom is in Independent Living facility. My Mom is in Assisted Living facility. I agree with others that she may need a higher level of care.
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Thank you everyone for your help and compassion.

just wanted to clear a few things:

1) The facility she is at suggested independent living after they assessed her. She was diagnosed 5 years ago but again she knows names and places when she isn’t stressed. She recognizes people and she is mobile. But when she is stressed like she is right now, she is aggressive and extremely agitated. She becomes delusional and there is no getting through to her. We know eventually she will need to go to AL sooner rather than later.

She is also not in the US and the country she is in is very strict regarding covid. She must quarantine for 10 days. We keep telling her once quarantine is over she can walk around and get some air. But she keeps saying she doesn’t want to do anything and just wants to leave. We also told her she will be able to make friends and do some activities which she is not interested in either.

2) My siblings and I are on the POA which my uncles tried to undo. There is very bad blood between her siblings and us, her children. They are toxic and abusive but my mother always favored them over us. After my dad died, we took care of our mom and kept her with us. We rotated her from all of our places. Her siblings had completely abandoned her but she always missed them. Now that they know she is sick, they all came trying to be the hero in her life without fully understanding what her disease is. There is much more to the story but all I can say is despite them being evil, she really wants them in her life. She is delusional to the point she thinks they will let her stay with them when they have absolutely no intention of doing so. It’s heartbreaking.

We are of south Asian decent. Dementia is not an understood concept in our community. They don’t understand this disease is progressive. We have gone blue in the face explaining it to them.

I will look into the new medication and talk to the facility about moving her to AL. Problem is her brothers told her they would help her get an apartment so she can be out of the “old folks home”.

thank you everyone for your help. I will just keep calling her and take it day by day.
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