OVer and over I am told she can't live alone - you have to make sure she is safe. Well, I am a firm believer that someone with Alzheimers will NEVER be safe again. Just last month, an employee at the extremely expensive, highly-regarded memory care facility was arrested for killing one of the residents. I watched my stepfather decline rapidly once we moved him there. Moving my mom against her wishes will not be a magic bullet that will solve anything in my mind. Why wouldn't we want to allow her to stay in her home until we absolutely have to? At what point do we decide she doesn't have the right to have control over what little she can? She has lost everything - her intellect, her social life, her ability to drive, travel, her husband, her dog, her independence. Are we wrong for trying to respect her unequivocal desire to stay home? I have 2 sisters and all 3 of us are living in a constant state of stress and anxiety and heartbreak and sorrow and irritation and fear and uncertainty. I worry about calling someone because getting authorities of any kind involved seems risky. We don't know what to do but we know that we don't want to be in a situation where we don't have any say about what happens to her. All i know is my biggest fear is Alzheimers and thinking that my only child could possibly have to live like we are living but without siblings to help.
Okay, so you want your mom to live at home. You don't want her to have any of the above. Instead she lives in her home, unsupervised sometimes, can't take care of herself and has little social contact. Alzheimers gets worse and it doesn't give you fair warning when she's about to wander, as my neighbor did in the middle of a cold fall night. She walked down the middle of her street naked. My friend's mom came out of her room stark naked and wearing her Depends on her head because she thought it was a hat. There were visitors present. My dad walked out of his house in the middle of the night, car keys in hand because he had to go to the office and work, he said. Another friend's husband put an egg on the stove to boil and left the house. Friend came home to a smelly mess and made sure he wasn't alone in the house again. One of my LOs got up and got dressed at 3:30 a.m. because he thought it was morning. Fortunately he was caught and told to put pajamas back on, it was still night. I once knew a lady who ate the potpourri. It was in a dish on the living room table, so it must have been food.
Most people don't get killed in memory care. Your stepfather might have declined at exactly the same rate if he hadn't been in a facility.
You and your sisters are the ones whose brains still function. Your mom's brain doesn't. Someone with dementia shouldn't dictate to you (plural). You are bound to keep her safe. She's lost everything? Well, not her life. She still has that. But if she sets her house on fire, or if she falls, breaks bones and dies alone, her death will be horrendously painful. In memory care, she probably dies peacefully in a bed with her three daughters gathered around. I'm very sorry, but this is how it is.
You choose.
My mom with dementia fell 7 times in a matter of 8 months & that was with a live in caregiver. She fractured many bones during that time.
She suffered more at home than she would have in a memory care unit.
My sister with dementia was given this while still at home and started falling. We got her off of it immediately and she recovered immediately.
Later she was FORCED into a nursing home against her wishes and ours! When I went to see her shortly after they threw her in there she was in a wheel chair ...could not stand, could not speak, was falling out of the chair. They were once again giving her the drugs we had taken her off of.
They even ignored the doctors note saying to remove the drugs. They like people to stay sedated, because they are LAZY and it makes less work for them. They moved her to another facility eventually where they were so rough with her that they broke her femur. Then made her bed ridden even though she could walk, but the staff didn't want to help her walk.
During the lockdowns they removed her food and water without telling us. She died several days later!
So no! She did not suffer at home at all. She suffered when they threw her into these horrible 'CARE' facilities!
One night Jim left the home at 2am or thereabouts bc he always insisted he lived down the block. He proceeded to fall in the street and hit his head on the pavement. He wasn't found for several hours when 911 was called. He'd suffered a subdural hematoma and died the next day in the hospital.
His funeral was very sad and I shed quite a few tears for him myself.
I had my mother placed in Memory Care Assisted Living for nearly 3 years and nobody killed her. Dementia did, ultimately, but she was beautifully cared for by "her girls" in the meantime.
As an only child with parents who made no plans for their old age, I got to manage their entire lives FOR THEM, which was nearly a full time and thankless job for me, let me tell you. I had total say over what happened to them in managed care, as their POA, and made all their decisions for them. As much as I had to do for them, at least I didn't live "in a constant state of stress and anxiety and heartbreak and sorrow and irritation and fear and uncertainty" because I knew they were well cared for, I saw to it myself firsthand. If there was something I didn't like, I spoke to the director about changing it. My folks were safe and I did my job.
It's heartbreaking because when you get to that point if your mind is still in tact you may wonder what the hell was the point in life at all just to end up like this at the end?
"Are we wrong for trying to respect her unequivocal desire to stay home?"
Yes you are wrong. This isn't about what a normal and competent person wants. Your mother has ALZ and what she wants and what she needs are two different things.
You need to find a facility for mom to go to. Your mother has an incurable disease and she is going to decline regardless of where she is living.
The only question is are you willing to wait another year or more and live with the anxiety, fear, and stress before having to be forced to place her in a facility?
And by then you will be so burnt out from it all that the love you have for your mother will be replaced by resentment because you didn't move her to a facility sooner. Get your sisters on board with moving mom into a facility sooner rather than later.
There are other choices besides a care facility or moving the mother in with one of the adult kids.
There is the 24-hour caregiver option if that's a possibility. If a person can stay in there home with help, they have a right to.
My stepmother is in MC, declining at a rapid pace, yes, she has no independence as she does not have the mental capacity to care for herself. She is well cared for and independence means nothing to her.
I look at both situations the same way, it is no longer what they want, it is what they need.
Not making an informed decision is not the answer, that is why you are all anxious and stressed. Why not tour some facilities and see what actually goes on.
Don't super impose your analysis of what she is missing on her and if she has dementia her thoughts are not rational in the first place.
Good Luck!
There is NOTHING that says that a dementia patient can not stay in their own home. As long as someone can safely stay in their own home and the POA agrees, great, let them do it.
In my case, I moved my mother because 1) I was getting burned out, short tempered and all around just being a mean, nasty human and 2) It was a sanitation issue (however, probably not as bad as it could be) 3) it was more cost effective for her to move into a managed care facility.
However, everyone is different.
If your Mom, and her POA are okay with keeping her in her home, GREAT, let her stay there.
Fast forward to the late 1990s when my other grandmother got dementia. We felt like the OP. Living home was at best isolating and at worst dangerous, but we felt a NH would be worse (not knowing that memory care was an evolving concept). I was about 30 at the time and was making decisions that my mother should have been making.
Grandma neither wandered off nor burned up the stove. She was eating canned goods right out of the can. It was very sad. The deal breaker (which I’m learning here is the deal breaker in almost every situation) was toileting. She got sick and couldn’t get to the bathroom and started peeing into old bath towels and worse.
We (my husband and I) ended up calling 911, and then having her released from the hospital into a NH, which had a dementia unit. It was almost as bad as the old hospital. Much more nicely furnished, but they drugged her to the hilt, to where she couldn’t even speak a coherent sentence. She ended up having a stroke, and there was a class action lawsuit that found the new antipsychotic grandma was on caused strokes. (My mother didn’t participate in the lawsuit, which would have only required minimal information).
I know this isn’t helpful and I’m just getting it off my chest. I’m coming to realize that I have felt responsible for my elders since I was a kid. Many here have questioned my decision to care for mom in her home, and keep warning me that it will end badly. But my NH experiences have been pretty bad.
As far as “ice cream shop with other residents, the Christmas parade downtown, shopping jaunts, movie trips, and so on. That's what assisted living and/or memory care is like” I’ve never seen anything like that near me. I HAVE seen nicer facilities than my grandmothers experienced, but unfortunately my mom would probably end up in the same facility as my 2nd grandmother, because it’s close enough to visit often. But now that I’m much older, I would have a lot more say on how my mother is treated.