AL wasn't what I thought it was.

ESkayP

I had a vision in my mind what AL would entail for my mother. The pamphlets and virtual tours were misleading. When Mom was having more and more trouble living alone, I wanted her to have a community environment with people her own age and a staff with nurses who would keep her healthy and engaged. That isn't at all what she got. After the medical director interviewed Mom, she agreed that Mom was perfectly independent and would need no particular level of care. She needed no ADL assitance of any kind. Her MMSE score showed mild dementia, but nothing seemed too concerning. I truly believed Mom just needed daily interactions, and then she'd get some of her old self back. My sister and I got Mom's apartment ready. It was perfect. Unfortunately, her transition phase was very rough. She didn't want to be there. Even though my sister and I took turns staying with her the first two weeks, she just didn't seem to adjust as swiftly as we'd hoped. I visited two or three times a week, and it was always the same. Mom was in her room, alone. The staff promised they would check on her three times a day and twice at night. They promised they would encourage her to come to activities and exercise classes. They promised they would take her for short trips on the senior citizen's bus. They didn't do any of those things even when I asked specifically for them to do it. I said she just needed reminding about things until she got used to the schedule. They did it a couple times, then nothing. I know that dementia includes a lack of initiative. It just didn't seem to me it was asking too much for them to help Mom through her transition to develop some new, enriching habits. If that kind of treatment is extra or an upper level of care, it shouldn't be. For this facility, AL is apparently similar to living in a hotel. Everyone just keeps to themselves behind closed doors until the dining hall opens. Mom didn't even make it to the 60 days they said it would take for her to fully transition before they demanded she be moved to MC in another wing. She started wandering at night, and they didn't have any security features for someone like her in the regular AL wing. I find that ridiculous. I believed them. All this money and they didn't even do what they promised they'd do to help Mom transition. Instead of getting better, Mom has gotten worse. I can't argue that she should go to an MC unit because I'm afraid for her safety at night. I wonder if they will interact with her there. I wonder if they will encourage her to participate. I wonder if when I visit, I will find her sitting in her room alone. It's not right. This place we chose has very high ratings. I guess I just didn't understand what AL really is. Has anyone else felt misled? Did you and your LO like MC better than AL? Either of them would be great if they were anything like the photos in the brochure.

housefinch

I’m sorry. I’m wondering if she showtimed during the evaluation and the staff somehow overestimated her level of functioning? If she’s always been a high functioning, socially adept person, she may have looked less advanced than she was. My stepdad got a 29/30 on the MMSE cognitive screening even though he was obviously in moderate dementia, couldn’t hold more than a superficial conversation, got lost a block away, etc. He very obviously would need memory care if my mom became unable to care for him, but somehow in a lucid moment aced the MMSE. I don’t think most assisted living facilities really have the capacity and staffing to care for patients with anything but very early dementia, if any dementia at all. At least not safely. I think many times it’s easy for all of us to overestimate our PWD’s level of functioning, especially since we aren’t subjecting them to a cognitive evaluation daily. Particularly when routine changes, she and many others with dementia really show their true level of impairment.

I’m wondering if you’re imagining that the solution to apathy is just some friendly encouragement from staff? I don’t think it’s that simple. Maybe for some patients. But that’s a big ask for others. Truly, I think we family members assume staff are lazy if PWDs are staring at a tv in their rooms alone. After reading many posts here, I can attest there are many different stories and reasons why that happens—and many times it’s not because the staff hasn’t tried. I say this because reading more about dementia on these boards and educating yourself might help you feel less guilty or angry. I’m really sorry you went through such a frustrating situation. I just would temper your expectations of what your mom will be doing in MC. I’m not sure expecting new, enriching habits from someone with dementia is realistic. You might be setting yourself up for unhappiness and for anger towards very hard working and caring staff.

Quilting brings calm

Residents of ALs can be encouraged to attend activities, but they can’t be forced to. The same with going to the dining halls for meals. Although most ALs will then ask the resident if they want a meal brought to their room( possibly for a fee). Residents are provided assistance, but they are also expected to be able to safely spend time in their apartment alone. Residents are not locked into the building, and can come and go from the premises as desired. Someone who wanders can’t be in an AL because they could wander off the premises unnoticed. My parents don’t wear their aid pendants like they are supposed to, so nothing sounds when they leave the building through the front door.

Residents with mild dementia, and who don’t wander, will be fine in an AL. However once they have delusions, hallucinations, wander, are aggressive, etc, they require more care than an AL can provide.

It does take people several months to adjust to a new living situation. However introverts will not become extroverts. People with dementia aren’t going to develop new enriching habits or start feeling like their old selves with social interaction. In fact, too much stimulation will agitate them. There is no reversing dementia.

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harshedbuzz

I'm sorry this happened to you and your mom.

Sadly, yours is not an unusual story at all. Our family has a version of your story as well. No matter what a company promises, it's a rare PWD who can be successful in a hospitality-model AL.

There are a lot of ways a PWD can end up mis-placed.

It could be the management of the facility unscrupulously pulled a fast one on you realizing you weren't mentally prepared for your mom to be in MC. There's an old saw 'round these parts that by a time family is willing to consider AL-- that cruise has already sailed. It's not unusual for a LTC facility to agree to a trial in AL knowing full well that 99% of the PWD will need to be moved within a month or so.

It's possible that your loving eyes are not seeing your dear mom as objectively as the caregivers do. Care needs to be at a level appropriate to mom at her worst, not as it is when she's having a really good day.

It's possible mom did showtime during her pre-admission evaluation which led the DON to assume a higher level of function.

It could be that the move itself triggered a slight progression in symptoms and behaviors. Most PWD do have a decline when removed from their familiar surroundings and routines.

And it is very possible that you, as a caregiver, were scaffolding her in many ways which allowed her to do as well as she had been. You probably weren't even aware that you were.

This latter scenario is how my least favorite aunt "failed" AL. Her adult daughter, who communicates entirely in ASL (so translation issues related to "nuance"), had a choice between an AL that was basically low-income housing for the elderly or a SNF. Family who helped her pick, pushed for the AL because they didn't "get" how much scaffolding my cousin was providing. In the AL, my aunt missed meals because she couldn't track mealtimes. She couldn't keep up with the conversations or games the other residents enjoyed and was, at best, ignored. A few of the elderly meangirls even banned her from their lunch table. About 10 days in, she fell at some point, broke her hip and was transferred to a SNF after surgery to pin it.

HB

mommyandme (m&m)

My first thought when reading your post, after being so sorry for this sad situation, is what Victoria said; getting “better” isn’t a thing with dementia. Maybe better hygiene care and more social activities being available is expected yet we can’t make our apathetic LOs get involved with things they are unaware of or uninterested in. This is all so very hard and I’m truly sorry for these struggles. I hope she and you find some comfort soon.

Anonymousjpl123

I do understand where you are. Painfully so. I, too, was genuinely excited for my mom to go to AL. I was. It was a huge step from living alone in her 3 bedroom apt, and she had been so lonely. In her case, she actually did quite well for 9 months. I always knew memory care was a possibility but never expected it to be so soon. Further complicating things is that my mom has NPH, which leaves open the possibility there will be cognitive improvement - meaning what would happen if I moved her too soon, and she can, in fact, with treatment function in AL?

What I have come to is that first and foremost my mom needs to be safe and cared for (because she’s an arrogant narcissist she also needs to be in a beautiful environment with educated residents even if they are stage 5 or 6, but that’s another story).

She needs to be where she is safe o her worst day.

That said, I got a LOT of support from her facility thinking about and coordinating the move. Is there a staff person you can arrange to sit down and have a long conversation with about it? Also, have you toured memory care there? in my place I was shocked at how closely it resembles the other sections - colors, furniture, staff.

I know it’s hard to push for these things, but it helps. I wouldn’t say my mom is happier in MC but she is 💯 safer, less lonely, and getting a lot more support.

I wish you luck. This all sucks. Let us know how it goes l.

ESkayP

I want to thank each and every one of you for your comments. It's time I face these harsh truths:

1) Mom's lack of participation is probably not because the staff didn't try. AL, even the MC wing isn't populated with cruise ship activity directors. Introverts don't become extroverts. I get that now.

2) Mom has a progressive, terminal disease. Her level of care must be measured by her worst day, not her best day. The new normal is keeping her fed and as clean and calm as possible.

I have met with the directors and seen the MC wing. It is nice and very similar to the rest of the facility. My expectations were clouded by irrational hopes based on the scaffold I had attempted to maintain for her. It helps so much to read all of your stories. So many things you've shared here were right on target with my experience. I appreciate that you all took the time to talk me through it. This is so hard.

Quilting brings calm

==This is so hard==

@ESkayP %#\? Yes, it’s extremely hard. I hope we weren’t so bluntly honest with you that you got insulted or intimidated. We are all extremely supportive here, but we are all also honest - and some days we are struggling too when we comment.

ESkayP

@Quilting brings calm I needed the bluntness, the honesty. I'm not insulted because I can tell you are all simply speaking from experience. That's helpful. I was struggling when I wrote the original post. I felt defeated and angry. I'm relieved there is a space here for me to be able to let it all out and get support back even when it's kind of a tough love thing. I appreciate you checking on me. I'm okay. In fact, I'm grateful for you.

katwjr

Wow, reading this post and comments was the inspiration I needed. This is so hard and I am trying to stay positive, encouraging and hopeful. Good days are great and bad days render me hopeless and defeated. Reading others' experiences really help me to understand that I'm not crazy or alone in this, but then again, it's not about me, it's about my mother. Daddy died suddenly just before Memorial Day. He was 97, so I was blessed. They were married 73 years and lived together in our home for the past 63. We moved my mom to AL in July. We chose a facility close to the majority of the family and were sold the ultimate AL experience, a lovely new facility, supervised, with man-to-man coverage for the first 30 days. The whole team was there to support her transition and acclimate my mom to her new home. Day one it fell apart. They "forgot" to bring her breakfast three days that week, claiming "she wasn't in the system yet". Then breakfast came as late as 10am, "due to unforeseen circumstances on the floor delivery prior to her floor, services may get delayed, for example if someone on the 5th floor fell and staff was needed to care for them"... No one came to help her shower, no one came to take her to the church service, the activity director stopped me in the hall one day to tell me how much my mom - "loved the music show - she just clapped and sang along" THAT is not my mom. There was no communication with me and what chatter I did receive was false. I could go on. I absorbed all the ups and downs and tried to figure out how the system worked/or didn't - I was there three times a day, despite working full time. I was getting burned out and that wasn't helping mom.

I prefaced this to set up my ask... I am meeting with the new administrator next week (third one since the property opened three years ago, (third dietician director since January). I met her at the meet and greet and asked her for a meeting, bluntly laying out my agenda. "How would you want your mom taken care of?" "What would your expectations be?" Based on what your sales staff is selling, what is reasonable for me to expect, and how can i do more? I told her I didn't want to come to her with a list of complaints, because I was sure she is already aware of the facilities' shortcomings. Since my mom has been there I have listened to constant complaints from staff, residents and family members - so I'm sure she has a bucket list of things to fix. Anyway, I have been warned by family members, not to be too demanding, not to overstep, not to "stir things up" because it will only but a negative spotlight on my mom and get the opposite response from the administrators. Has anyone had a meeting with the director(s) and how did it go? I plan to go in with notes and be matter of fact, not emotional - but what is the best way to effectively communicate with these people? My initial meeting with the fill-in director, fill-in DON and my "sales lady" left me discouraged. They nodded and head tilted, were "sorry for my loss" and encouraged me to get my mom to join all activities. I felt defeated, unheard and dismissed. Please offer any comments. I am learning here - I want to help my mom feel comfortable, safe and not alone in her displacement. She does have mild dementia, is depressed and misses my father terribly. I'll wrap up for now, although I could keep going - I'm sorry for the long rant. I'm trying to sort this out in my mind as I write. Thanks to all of you out there for sharing your posts, they have been a tremendous source of encouragement and guideline for me, Kathryn

ESkayP

@katwjr I just saw your post here. I haven't been on the forum for several days. By now you have already met with the new administrator, and I hope you were able to get some answers. It definitely sounds like that particular facility is struggling with so much turnover. I know that the every-day workers are likely stretched too thin for all the duties they are expected to accomplish, but there is no excuse for making your mother wait that long to eat breakfast. I will say that my mother gets more attention in MC, but I still feel I have to check in pretty frequently to make sure they are engaging her. I had to take her to her neurologist to get a lumbar puncture. I had told them about it weeks in advance, but even though the administrator assured me the MC unit would have the same calendar, they didn't know anything about it. I called the afternoon before just as a reminder to make sure my mother had breakfast and was dressed a little earlier. They had no idea. When we got back, I asked them to please check the bandage on her back later and give her Tylenol if she developed a headache from the procedure. I got nods, but they didn't write it down until I asked them to please do so. Also, they always seem surprised when I call. It makes me wonder if they aren't used to family members checking in. I don't know, but my mother was very upset today. I think it had to do with fatigue from the doctor's appointment the day before. It was a very long drive, and she was having a lot of anxiety. I just want the women who work there to comfort her occasionally. In her condition, I know there isn't a solution. That's why this whole AL/MC situaiton is so difficult to manage.

katwjr

Morning! I have not been able to meet w/ the new administrator yet. Mother has been really down, so all of my available time I have devoted to her. I just started reading the 36-hour day (very insightful book) and it has helped me -just like this forum, in not feeling so alone, overwhelmed and crazy...It mentioned the lumbar test - how was your mom's results? I get it about talking with the staff, they nod, then don't follow through, some are overworked and some really don't seem to care. My mom had gotten her TV out of sync with the cable box - when i checked in on her through Alexa - she said her TV didn't work, I phoned the med tech and ask them to please help her with her TV...8 hours later I found her slumped in her chair, staring out the window, frustrated, bored and out of sorts. It seems to be the little things that make a difference and yet they can't get seem to be done. Anyway I hope to meet with the administrator this week. I hope your mom is getting along OK, please respond if you ever want to hash something out - I love to listen, and can definitely relate.

ESkayP

Mom's LP test results won't come back for a few weeks, but I'll be posting when I know. I'm really sorry to hear about how the facility wouldn't fix your mom's TV. You're so right about the small things being really important, and I can't understand why they are too busy or too short-staffed to make their residents contented. My mother used to have a Dr. Pepper on ice every afternoon when she had a refrigerator in AL, but in MC, they'd have to bring it to her from a community refrigerator. I bought some, but they haven't kept it up. It's a little thing that makes her so happy. I wish they would do it.

I will look for that book, The 36-Hour Day! Thanks.

Anonymousjpl123

@ESkayP so interesting about the doctor pepper on ice! My mom has the same thing about coffee in the morning. They do not automatically make everyone coffee where my mom is (which baffled me, apparently the coffee maker was broken) and I had to ask them several times to please make my mom a hot coffee every morning. It really matters like yours having that cup or coffee was a ritual she enjoyed. They do it, but I have to nag.