I'm the youngest of many siblings, the eldest of which have legal control over my mom. In two weeks, those charged with her care plan to move her , without giving her any other option, to a dark, smelly "memory care" facility. I am sickened at the the thought of her being in that place. Is there any way I can stop them from doing that, opting instead to bring her to my own home?
BTW, I've seen a few facilities. They are not like dungeons at all. You may feel better if you visit the facility.
The "why" is a dysfunctional (read "control freak" and a bunch of sibs who feel so guilty that they are not there, that they will do whatever the local sib suggests. And mom pays the price
She has expressive aphasia, so cannot speak for herself.
Are finances playing a role in the decision or do you live where there are few options for memory care ?
If this is the case, your sibling may not just be a control freak. S/HE is charged by the courts with providing your mother with the proper level of care to keep her safe. If the AL says they can no longer handle her, it may mean she is attempting to elope. What is your plan to provide 24/7 supervision and care for her?
Would that care plan stand up to a judge' s scrutiny? Write it up and submit it to the court.
The biggest question in my mind is if the AL facility had requested the move.
Please note, if your Mom's current facility says she needs a higher level of care, that would mean if you did bring your Mom home, you would need 24 hour care, thus 3 shifts of caregivers. I assume you would take one shift, and hire out 2 other shifts. You would need to set up your home similar to Assisted Living/Memory Care.
My Dad had 3 shifts of caregivers at home and it cost him $20k, so be ready for the sticker shock. If you plan to take the night shift yourself, be ready for very little sleep. My boss's wife had Alzheimer's and most days he came into the office with 2 or 3 hours of sleep.
You do not understand the day to day of caring for a patient that has reached that level.
Believe me, after a couple nights of no sleep because she is wandering all over and cannot be left alone...because she is calling constantly for help, etc. after a day or two of explosive diarrhea all over the bath, bedroom, halls, etc. you would begin to know that a memory care facility is the only way to go. Honestly, the assisted living facility cannot deal with the issues. And will not. It is not their role. If you believe you can....then, hire a carpet cleaner, a daily house keeper, and make sure your washing machine is in good repair.
Can you imagine what a facility that has many, many patients who are all in that condition must smell like in the morning? I am a neat freak, and the morning in this house was awful. Till the carpet cleaner was in, and the bed striped for the daily washing, and the bath rugs washed and hung out....believe me, my home stunk. Every morning. Every day. Just image that ... But multiply by 50 patients!
Visit in the evening, or at least in the late afternoon. The morning clean up isn't a fair determination of the facility...since they are still in the cleanup phase of the morning mess.
Have you visited the facility? Have you looked at others? They are not as dank and dreary as they once were. They are regulated by the Health Department. Have you looked at ratings for this facility on Medicare's or the State website? Have there been any reports or investigation requests? Look up the information, you may be surprised.
I do have training / licensed as an Ombudsman for the Elderly in California, and an EMT with specialty in geriatric care and have done elder care, so I DO understand the level of care involved. My mom is not currently a night time wanderer, diarrhea is not common, but happens. No the AL cannot care for her- they say "if she can't get to meals by herself, she doesn't eat". She does not get to meals by herself and the lack of nutrition definitely impairs her cognitive capability. That is one of my biggest concerns about where she is now. I live 1.5 hours away right now, work from home 3 days a week, work out of the house weekends and would need care for her then. She has been getting private daily care in the AL 5 days a week, but even that is not enough as she cannot keep track of time of day to get to meals and needs help bathing. (The times I was there on her bath night, nobody came to help her. She now has open sores on her back)
I am happy to bring her here- (already have the walk-in shower and accessible toilet). But I cannot make a three hour round trip drive daily to take care of her.
The facility is awful- no natural light, blinds drawn, figures slumped over tables with a drink and straw in front of them, and awful odor. My mom is nowhere near that level of deterioration and enjoys accompanied walks outside, watching the birds, and is very pleasant . She is not a flight risk. I enjoy my time with her.
Sibs are not interested in looking for any other facility- the ones that aren't here feel so guilty for not being here and helping that they automatically and without question capitulate to the oldest sib who is here. If I sound bitter, perhaps I am- that the eldest sib will allow her burnout to burn my mom (even though she is not now nor has she ever had my mom in her home)
I appreciate the questions on "legal control" and will follow up.
I did some quick checking. There's a Sunrise facility is located between Lawrenceville and Snellville in Georgia, NW of Monroe. Looks like it's about 20 miles away.
I've seen two local Sunrise facilities; they're quite lovely, in a Victorian image style.
It might be worth checking out; I never smelled any odors when I toured there some years ago. There were resident pets which added an animal component for the residents to admire and with which they could interact.
There should be more options than a sub-standard memory care place or your home.
Have you considered a nursing home?
Have you looked at other memory places?
What about a facility near you, so you could visit often?
I would hope that you and your sister can work things out because you both want what is best for your mother. Is Sister the healthcare proxy? POA? Guardian?
We decided at that point that it was going to be imperative for mom to be in a long term facility quite close to one of us. Given our options, we chose to place her closer to my brother in Connecticut as opposed to near me in Brooklyn. My brother and his family bear the brunt of the caregiving, visiting, etc. I do the most travelling. Compromise is needed, trust in the other party, and an ackowlement that what we are ALL doing is hard.
Try to think the best of your siblings, and try to imagine what has been going on...are they getting several calls a day from the facility? That can be enormously stressful. It sounds like your mom is pleasant, but is she at times suspicious, paranoid or delusional? My mom spent this summer weeping that she had leprosy. It would have been funny if it hadn't been so wearing, especially on my my sister in law.
Try to have a sit down with your sibs with an attitude of understanding and not accusation, of " you've been carrying the load, let me take it up now" and not " you've made a mess of things, i can do better".
If you want to change anyone's mind, you'll need to come up with workable options that won't throw you into direct confrontation with the eldest Sibling-In-Command. Taking your mother out of your sister's location into your home, for example; undertaking a level of commitment that vastly outweighs (read: outshines) everyone else's; these are exactly the kind of things that are the caregiver's equivalent of Joseph and the Coat of Many Colours. They're *going* to say no, and you know that, and you can't overrule them, so don't even bother.
Focus on finding a better memory care facility. Be quick about it, too.
Then I learned from the Staff and from Dad's private caregiver that Dad's memory wasn't as clear as he makes it out to be. Apparently when I was around Dad he was "showboating" which took me by surprise.... I did know at night he was "sundowning" where he was confused.
Also learned that Dad was starting to wander which really concerned me. Dad had been in very early stage of dementia, or so I thought, but dementia can change from stage to stage quickly.
Goldfinch, telephone your Mom in the late afternoon or after dinner, if you can, see if she sounds clear of mind or is off in another time dimension.
Is there a history of bad blood berween you and your siblings? Would those in control be open to a mediator acting as an arbitor?
What does your mom want, or is she the kind of person who agrees with whomever is in ghe room?
I wonder if you have visited this Memory Care facility you describe as dark and smelly. Also, if you are interested in bringing your mom to your home to live, I would give it a 2 week trial, so you will see what it entails to care for a patient who has dementia.
I initiated contact b/c we were having problems with the SNF my mother was in for rehab post leg fracture. I got good advice on dealing with the facility, information on it as well as another facility which had a bad reputation, and how to proceed.
My thoughts are that if you find information documenting that this facility is unacceptable, you can share that with the ombudsperson.
You can also research that facility at the Medicare web site; I spent considerable time in the past checking out facilities before I made selections. But be aware that the criteria are more or less impersonal ones - they're based on standard sets of criteria, but as I recall they do address cleanliness.
There's another possible avenue to pursue - if this place is as bad as you describe, it might rise to the level of elder abuse. I would take some photos and provide them to APS, or to the police for investigation of abuse against multiple residents, including your mother.
Good luck. This must be very frustrating for you.
The sibs will not support any move, anywhere, for the reasons I stated earlier.
The Ombudsman's office has been alerted to the deficits I noted, so now I need to wait to see what they determine.
Thank you all for your help!
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My mind's gone blank. I don't know what to say.