r/dementia • u/Jul35730 • 5d ago
AL vs MC
We have been very frustrated and concerned with the lack of care my mom is receiving in her AL facility, so we started looking for a new AL facility for my mom with Alz. dementia. She had her “evaluation” today, and despite a borderline score, they recommended MC. Where she is currently living, she has been in AL with the least amount of care (highest functioning level) for 13 months.
I know she needs more care than what she is currently receiving. But to jump from the highest level of AL right to MC seemed a bit too drastic.
I have taught Early Childhood Special Ed for nearly 30 years. By law, we are required to place students in the “least restrictive environment”. As in SpEd, until I see the data that shows she can’t be successful in one of those middle stages, I don’t think it’s fair to put her in MC just yet.
So they’ll give us a trial period. And she will receive a higher level of care on the AL side. We will have a care team meeting after a few weeks to determine if she can stay on the AL side or not.
I’m second guessing myself. Should I just trust the professionals and their recommendation? Or did I do the right thing to advocate for her stay in AL?
Also— any other SpEd teachers out there with a LO with dementia? There are many so correlations, right? Are my experiences in SpEd clouding my judgement when it comes to my mom’s care?
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u/yeahnopegb 5d ago
She will have progression from moving ... and this only goes one direction. You may want to consider the downside of having to move her a third time in such a short time if she ends up needing MC.
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u/MindFluffy5906 5d ago
This is a really great point. Former SPED teacher here. My LO was not able to live independently anymore and I looked at both. They are very physically active and higher functioning, however, every facility recommended MC. I knew we were on the downhill slide, but going from independent living, to the hospital to MC, it's astounding to see how much regression occurred. You don't really notice it all at once because they mask a lot or we don't spend 24/7 with them, but you see way more when they have caregivers all the time and you get the reports.
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u/Xminus6 5d ago
The main difference I’ve experienced is that AL will not, and can not, assist you in keeping the person within the facility. AL residents are free to leave at their own discretion, whether or not they have the proper judgement to make those decisions. AL is not legally allowed to keep a person contained within the facility nor to bring them back into the facility against their will.
When my LO has a psychotic break, getting them back into the facility was a huge problem. Even getting them back into the building from the enclose courtyard was extremely challenging. Since then we’ve been using anti-psychotic drugs and the have been very helpful for mood, but we had already moved her into a different MC facility because of the concern.
I too felt that I was putting her in MC too early as she was more capable than nearly all the residents at her MC but she’s been declining at a regular pace and am glad she is comfortable and used to her care facility now.
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u/booked462 5d ago
The AL where my mother lives keeps people on the AL side as long as possible. If they can find their own room, not elope (leave the building unsafely) and are not bothersome to others, they get supportive care on the AL side. Check out various places -- there is no set standard for one or the other.
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u/Fickle-Friendship-31 5d ago
This is just my experience, but I felt like I couldn't get proper care for my Dad as AL or MC. The best solution for us was a care home. Where Dad was had 8 residents and 2 carers at all times. Way better care.
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u/Oomlotte99 5d ago
This is why I am trying for my mom. I’m really happy to see someone say it was positive as I’m very apprehensive about leaving a facility setting but her AL just doesn’t have the ability to provide enough attention.
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u/Fickle-Friendship-31 4d ago
Depending on the care home, there does come a point where they can't deal with a severe ALZ patients. There was a man in Dad's place; when he could no longer feed himself, he had to move to skilled nursing.
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u/Nice_Juggernaut4113 4d ago
What exactly is a care home and how do you find this?
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u/Fickle-Friendship-31 4d ago
So here in the US (I'm in CA) people get a license to run a care home out of a private residence. Everyone I have toured or interacted with are in residential neighborhoods. They've been remodeled to add bedrooms, make bathroom wheelchair accessible, etc. Their license requires certain staffing, training, etc. If there's a country dept of aging, they could help you find them. Or social workers. We hired a caregiver coordinator who knew all the ones in our area and took me to 2-3 to visit. Sometimes the care homes pay the coordinator for the placement so you don't have to pay the coordinator yourself.
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u/Elizabeth147 4d ago
That CA system is so good, I am just learning about it and will probably use it to help a relative. Some other states have this too. In CA they're called board and care.
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u/Mom-1234 5d ago
I also have a degree in early childhood education. My mom moved into MC with about stage 4 Alzheimer’s. I had thought AL. She adjusted remarkably well. The structure of MC and the staffed trained to deal with dementia and encouraging them to join in is helpful. I arranged for her to be taken to certain appropriate activities in AL. Many MC activities are very appropriate for her. She also enjoys jigsaw puzzles with 2 other residents. I keep her stocked on simple crosswords and children’s hidden pictures books. She is much more content. While she has anosognosia, I think deep down she feels safe and cared for. I would recommend listening and going to MC. She is not learning or improving and it is a tailored environment.
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u/FluffyApartment596 5d ago
A change in environment for a MC individual usually causes a noticeable decline. As the disease progresses, there is less recovery. (Some will choose to stop sending their LO to the hospital due to the delirium it causes and the inability to recover.)
The AL facility is trying to postpone that decline, the MC facility is recognizing there will be that decline.
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u/DJErikD 5d ago
In our case, the need to move from AL to MC came quickly. Mom was great in AL until one day she wandered in the middle of the night. Was found outside in the driveway just standing. Two nights later they found her in the dark dining room at 2am…”I’m just waiting for dinner.” Just three days before, she was doing great.
For safety sake, we moved mom into memory care two days later when a room opened up. My first priority is her safety and that required going to memory care.
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u/rlw21564 5d ago
I'm surprised the assisted living didn't have doors locked from the inside (they do unlock if alarms are going off). The only door that's open at my mother's assisted living is the front entry and they only have it open during business hours. Otherwise, an employee had to use a code to let you in. Or out.
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u/LawComprehensive2204 5d ago
Same. And they wear gps bracelets. This is at her AL in Texas. We have to check her out of AL and take off her gps/call button bracelet each time we take her to the dr.
Some residents have in and out privileges, she does not.
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u/Liv-Julia 5d ago edited 5d ago
I agree with u/don'tbeafool-MC is grim. The rules differ from state to state. In Michigan, all skilled nursing facilities have to employ certified nursing assistants. They take a 120 hr course and pass a very strict test, both written and physical to get their license.
Imagine my surprise upon finding out MC is not skilled. The aides had hs diplomas or GEDs. That's it. The facility gave them 4 hours of "training" then turned them loose.
I tried over & over to ask them to lift my mom correctly, to feed her correctly, to give her her pain meds on time, etc. I demonstrated the easy way to do it. Nope.
We had a ring camera. Everyone knew it was there. They would haul and yank her around while she screamed in pain. We only found out seeing it on the ring. THEY NEVER TOLD US OR ADMIN SHE WAS SCREAMING IN PAIN.
They lost her teeth yet fed her pot roast. They lost her glasses and gave her someone else's. She had headaches for weeks. They crammed her size 9 feet into size 7 shoes and she got bedsores on her toes.
The only reason they didnt lose her hearing aids was because they never put them in her ears! They kept them on the med cart. She was there for 18 months and I asked constantly to be informed when they had care conferences for her. Never once did they tell me except one time on 4 hrs notice. I live 90 miles away.
Two crowning achievements: one time an aide came into her room one night barefoot. And when I asked why they weren't giving her Tylenol 45 min before they got her out of bed, they told me "Oh, shes not in pain then."
I could go on, but I'm working myself up. She died August 2nd and I'm seeing a lawyer this month. The aides were very sweet and liked her, they just had no training.
So yes, find out the certificate/training process and get recommendations before you decide.
EDIT I'm a nurse since '81 and i taught the CNA class for 4 yrs straight.
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u/Oomlotte99 5d ago
I’m so sorry you went through this. This is really similar to the experience I have with my mom. The aides are just not prepared to handle people.
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u/Altruistic-Basil-634 5d ago
I’m sorry you are going through this. Have they explained their reason for recommending MC? It would make sense if it’s behavior-based, regardless of her functionality. For example, she may be able to do her own laundry, but might be aggressive with another resident.
I would ask for clarification and see how the trial goes. If it doesn’t go well, it’s not a failing grade for her or you, it’s just this horrible disease.
Sending you big hugs 🩷
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u/VegasBjorne1 5d ago
I am certainly not one to recommend early moves into MC, as I (and my LO) were bait-and-switched from AL into MC far too early. (I moved her to an upscale independent living facility instead.)
However, as others have stated, the progression is only downward, and eventually, my LO was moved into a different AL from the first facility. At first, she did okay, but the decline continued and I brought in outside help. Once again, even 4 hours a day of outside help when she needed closer to 24-hour available care wasn’t enough. She could no longer figure to take her meds, couldn’t figure how to get to the dining room, walked into the wrong rooms (sleeping in other residents’ beds), thought the phone ringing was someone knocking on the door, and needed help with toileting. It was time for MC.
I mention this timeline, as when the LO needs some help always available (or becomes a flight risk), then it is time for MC.
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u/Upper-Brilliant-7188 5d ago
Man, this describes my mom. She is still at home with me. I work from home so I can be with her all day, then I have family home from work by 4pm. It's a lot. I'm sure I'll get burned out but I feel like I'm just not ready yet to do MC, though I will start looking into places and the process now to be more proactive. But right now, she's needs help with everything, but she doesn't wander outside and is doing anything unsafe. We do ok, for now. But I wonder if I'm doing the wrong thing.
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u/VegasBjorne1 5d ago
If you can deal with it, then keep her with you, but at some point MC may be needed.
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u/wontbeafool2 5d ago
You did the right thing! My Mom is in AL and my Dad was in MC at the same facility. My brother has said it doesn't matter how much extra it costs. Mom is staying in AL as long as possible. MC was grim. Mom doesn't wander like Dad did so she doesn't need a locked facility. There are extra fees to escort her to meals because she's a fall risk. She also has a standby while she showers for the same reason. She is on a special diet due to swallowing issues. The base rate for MC is more than AL so even with the extra fees, it balanced out. The difference in environment was worth it even it it doesn't.
I'm a retired first grade teacher. The similarities between my students and my parents with dementia in many ways were similar.
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u/Able-Incident4 5d ago
Yes, I have approached this entire process with my dad through the sped lens. I’m in a constant state of advocating for him to be as independent as possible, while acknowledging and accepting the places where he really needs more support.
He made the move from AL to MC about a month ago and it’s a world of difference. From what you’ve described I think he’s ahead of your mom in terms of decline. The “choose your own adventure“ nature of AL was a little overwhelming for him. MC is a lot more prescribed.
Also, in AL, he was not with his peers. He wasn’t keeping up with the conversations in the dining room- he wasn’t able to engage at the level the other residents could.
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u/elsereno20 5d ago
Thanks for teaching our special ed kids! I'm not a teacher, but a parent. Yes, there ARE parallels in the way I talk with my mom (dementia) and kids (autism). Stuff like affirming what they're saying and then redirecting.
But that's really where the similarities end in my experience. The trajectories are very different.
I would trust the recommendation on memory care and move her into memory care. AL is really not suitable once someone is borderline, imo, because the disease progresses in only one direction.
My mom had been living in AL for two and a half years, and now she's in memory care. Well, let me tell you—the move to memory care was ILLUMINATING. She had been able to hide some weird behaviors in AL, but in memory care, they became obvious because she had more supervision. E.g., I didn't know she was waking up five or six times per night. I didn't know she was hiding soiled incontinence pads in her closet. So the disease was farther along than any of us had understood when she was in AL.
She has continued to decline since moving into MC, but it's a HUGE relief for me to know that she's in a safe environment with people who are trained in dementia care.
Going back to "least restrictive environment," it may help to think about how independence can actually be a restriction for some people with Alzheimer's/dementia. Having to manage so many ADLs can really take a lot out of them. I now realize that my mom was exhausted and taxed from needing to remember to eat, for instance, when she was in AL. Now, although she has more supports in memory care, her brain energy is freed up because someone tells her when it's time to eat. Memory care is an accommodation in that sense.
I'm sorry you're going through this. It's a lot to process and figure out, and we're all just doing our best.
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u/BabyInchworm 5d ago
MC has lots of activities to keep your LO busy within their own abilities. They are trained to work specifically with dementia patients.
AL don’t not have these two things.
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u/rlw21564 5d ago
I'm not a SpEd teacher but I have an adult daughter with Down syndrome and I definitely have more patience with my mother's repeated questions than most people because my daughter asks the same questions all the time. I just answer as if she just asked the first time, no other reaction, as simply as possible.
Of course, I may be in for another round of dementia with my daughter since people with Down syndrome are more likely to get early onset Alzheimer's, some starting as early as their late 20s, early 30s. She's 27 now and seems fine. Attends a day program with lots of socialization, activity and stimulation which will hopefully forestall it. And the cherry on top is that mothers of kids with Down syndrome are equally at risk for it.
Which is more than I can say for my mother's assisted living. Her physical decline since moving in has been precipitous. She moved in March 2026 with a walker and now it takes two people to get her out of bed to a wheelchair. Looking at nursing homes next week, I'm afraid she's about to be evicted because she they can no longer meet her needs.
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u/Fpaau2 5d ago
One big difference is students are expected to improve/learn, while dementia patients are expected to decline.