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How to prepare for move to MC
Hi all. I found a really lovely MC for my mom and will be moving her in three weeks. I think she may adjust well since she really likes to be social, but she has made it clear that she doesn’t want to go to MC. She does want some freedom and to be able to do things in her own so I’m thinking I can use this to my advantage. What and when do you tell your LO? It was recommended that we say she needs observation by a doctor or rehab for a few weeks. But when do I tell her? The day of? She has a doctors appointment two weeks before. Do I have the doctor start the fib for me then? Then how often and when do you visit? One place said not to visit for a week and the one where she is going made it sound like it was best to come sooner. Or maybe it depended on how she was adjusting. Do they give your LO meds on the day of the move? Do they usually get worse after the move? I appreciate any and all advice. Thanks in advance.
I am so happy you found a place for your mom! Everyone is so different, it’s hard to say. We were going to not tell my FIL until the morning of the move, but DH ended up telling him the night before. We used the fiblet that the doctor said he should go there to take care of some medical issues. He always respected doctors so he didn’t argue that.
It went okay, he didn’t say much at all about it which surprised us. The day of, he was most concerned about not finding his way around and we kept reassuring him he would have help. A staff member did a great job of taking him under her wing, and introducing him to everyone. I think we waited a week to visit, but he never did have a meltdown or ask to go home. He said he liked the caregivers and food and had made some friends there.
I probably would not have the doctor start the fib, just because she will probably not remember anyway and each time it is brought up it will just be a stressful time until she forgets it again. That’s why we waited until last minute.
That is not everyone’s experience. They all have adjustment periods, some just handle it better than others. Since she is social, hopefully the staff will introduce her to some residents that she can hang around with. I know my FIL’s MC had so many activities, and everyone was always together in a group, there wasn’t much time to stew over things.
So glad you found a nice place for your mom. That is a huge success right there! Glad you are getting her in before an emergency makes it more disruptive.
I agree with the others to not give advance notice and to “blame” the fall or other medical observation needs for the placement.
My mom has been in her facility for almost three months now. We had to find immediate respite care (thankfully I had already toured places and had my top choices in mind) and we luckily found a room within a few days and she has been there ever since. The first few weeks had some ups and downs. She loved the social aspect, but called several times / asked about her house (her emergency was a house crisis.) But by the end of the month she was in a routine and had settled in nicely. It has only gotten better for her. She has friends, and the staff love her outgoing personality and gregarious nature. She always tells us how much she likes it and hopes we like it too (as if asking for confirmation). At first I visited more as she asked me if I was “leaving her” . But within the few weeks I go when I want to - not because I feel I should check on her. I enjoy my time and I am more a daughter now v caregiver. We did have and continue to have her companion visit for continuity- but even that is less - but the companion is a good extra set of eyes for us and she has grown so close to my mom she stayed longer than we paid just to spy on her to ensure she was happy. We have had a couple of instances of social issues - one man yells (a lot) and my mom is a hugger- which is hugely appealing to most the folks, but not for a few. But other than that her life is simple, happy and active.
This does not mean it is easy for me at all times. Although I have less stress in day to day (but still over see her finances and am her DPOA) but I still have the same guilt and sadness others have discussed. I don't get the multiple daily calls- which is great and sad at same time. I miss hearing my mom- but as my son reminds me she looks happier than she has in a long time. She is constantly around other people, engaged in activities (or watching), has three hot meals etc. and is safe.
Initially I set up the room very sparsely- as we positioned this as respite (which it was), and she thought of it as a hotel (since we were staying with her in a hotel while the house was being worked on), and slowly have brought more things from home. She no longer asks about the house -only once in a while, and more of a affirmation the work is going well. We intended to move her to a one bedroom when it was available, but she has settled in, and is rarely in her room so we are saving the money which will help for the future care.
So for her this journey was much harder on me than her. She settled in and is thriving in her own way
Good luck on the move and please keep us posted!
Is there any way to predict whether someone will do well in memory care, vs. getting completely out of control agitated or declining cognitively? My understanding is that institutionalization generally accelerates the cognitive decline, but I've been interested to read here about people thriving in memory care.
I'm going to try my mother on an adult day care program again, now that her behaviors are improved (between meds and a good aide). I know the chances are slight that she'll tolerate it, but I feel I have to try. If she can tolerate adult day care even just 1 or 2 days a week, that will give me hope that memory care will be a possibility one day. Instead of having to wait until she's too far gone to protest, or for a crisis to force the issue.
The thing to remember about memory care facilities is that they can kick out a resident for any reason - they have no legal obligation to provide care, and they don't even need to give a reason. Persistent and difficult behaviors is one of the things that is likely to get someone booted. I'm also worried about one of my sisters, who has been instrumental in driving away several aides and has even caused a home care agency to fire us. If she starts calling the memory care place and doing her thing, they may boot my mom out for that reason too. Does anyone know how common it is for someone to get kicked out of memory care for behavior problems? I've heard a lot of stories from home care aides.
Nutty Professor it depends on the facility. A good MC will work with you to get problem behaviors under control, usually with meds and/or a visit to a senior behavioral health unit (in-patient setting) to get things stable. Not all will. Some pick easy residents and won't keep difficult ones. A word of mouth recommendation is really good for knowing what a place is like on that front. It also depends on the behavior. If it is being crotchety, needing to be cajoled into bathing or changing, yelling etc that is different than physical aggression or anything that puts staff or other residents at risk. The latter will definitely get someone booted if the family doesn't get pharmaceutical interventions and get it under control; they have to protect everyone else.
Is your sister POA? If not I would get out ahead of that if/when you chose a MC facility. I would not tell her the name of the place until your mother is moved so she can't mess it up. They have no obligation to accept your LO and having a disruptive family member will not help her chances. Once a resident has moved in I have known facilities to ban certain family members if they cause problems. In my friend's case they were going to ban her brother from visiting the facility. He was following staff around, writing a diary on things he thought they were doing wrong and intervening in care and really irritated the staff. Eventually they settled on he could only visit during certain times with another family member there to keep him in check. Some facilities will be more tolerant than others, both for the resident's behavior and the family members.
Is there any way to predict whether someone will do well in memory care, vs. getting completely out of control agitated or declining cognitively? My understanding is that institutionalization generally accelerates the cognitive decline, but I've been interested to read here about people thriving in memory care.On what are you basing that assumption? Did you read it somewhere? Did someone share that as a personal anecdote? Is it just a guilt-fueled fear you have?IME, this is not necessarily the case. Most PWD do have a period of adjustment to a new environment, routines and people and some agitation and unrest is pretty typical. I expected my dad who was adamant about asserting his independence and doing as he pleased to really struggle for months but he griped for about 2 1/2 weeks before mostly settling in. FTR, I have a single picture of my dad smiling in the last 5 years of his life- not with family at Thanksgiving or Christmas, not with friends at his 80th birthday, not with his grandkids doting on him- it was taken with my mom at a Valentine's Day party at the MCF as he sang "their song" with the DJ.On the other hand, when my aunt who'd previously lived alone as a widow in a very remote area went to MC, she positively blossomed with nutritiously prepared meals, outings, social activities and attention. Her physical condition improved a great deal and her cognition seemed to improve and level off for a long time. Sometimes I think we see a decline and assume it's the choice we made to move them in with us or to MC. But I think sometimes it's a "chicken or the egg" scenario- where a subtle decline caused us to change something which we later see as cause and effect.
I'm going to try my mother on an adult day care program again, now that her behaviors are improved (between meds and a good aide). I know the chances are slight that she'll tolerate it, but I feel I have to try. If she can tolerate adult day care even just 1 or 2 days a week, that will give me hope that memory care will be a possibility one day. Instead of having to wait until she's too far gone to protest, or for a crisis to force the issue.Some have success framing the day program as a volunteer position helping the elderly. That wouldn't work for me as dad wouldn't do anything not tied to a paycheck. YMMV. But he was successful going into care.
The thing to remember about memory care facilities is that they can kick out a resident for any reason - they have no legal obligation to provide care, and they don't even need to give a reason. Persistent and difficult behaviors is one of the things that is likely to get someone booted. I'm also worried about one of my sisters, who has been instrumental in driving away several aides and has even caused a home care agency to fire us. If she starts calling the memory care place and doing her thing, they may boot my mom out for that reason too. Does anyone know how common it is for someone to get kicked out of memory care for behavior problems? I've heard a lot of stories from home care aides.There are facilities that will boot people for behaviors, but if you do your homework you can find a better quality facility that takes this sort of thing in stride. It is useful to be transparent when talking about your situation. You'll quickly get a sense of which places are willing and able to manage more challenging residents and dynamics. A local support group will have a sense of which places cherry-pick and which have the training to roll with things that can be challenging. Mom's first choice for dad wouldn't offer him a spot in their MC because of a potential for "behaviors". My first choice was able to redirect those behaviors and provide better care than we were able to manage at home.
I'll chime in as well...
My sister had such a rough time prior to memory care. She was stressed because there was so much she couldn't do anymore and it frustrated her. I had two caregivers at home while I wasn't there. They did a lot for Peggy, but sometimes, okay - many times, she'd just call me and ask questions. Like, "can you help me with the little white thing?" Ummm, maybe? Paper towels or the springy roll for the toilet paper, or something else? How many earbuds did we go through the last two months before MC? Man, so many. She kept stepping on them and breaking them. So much other stuff (including incontinence), but it all added up to intense stress for her - and for me and my s.o.
She didn't want to go to memory care, she viewed it as a punishment for being bad (her words), so I felt incredibly guilty about the whole process.
The day of her move (in late October 2021), I had one of her friends distract her with a scrapbook. In the meanwhile, me, my s.o., and her best friend put together her room in the MC. We didn't tell her about the move beforehand.
The first week or so there were tantrums and meltdowns, but MC staff said it was okay to see her, so I saw her most days. She worried that we were going to just leave her there. I assured her that I wasn't going to abandon her.
After a few weeks, she got into a rhythm, and yesterday she told me again that she likes memory care, and that she's happy there. She's still "with it", at least sometimes, and yesterday she was fairly coherent.
She's relentlessly sliding downhill, fast enough that it makes my head spin sometimes, but I know it was a good move for her. There is no part of me that thinks placing her was a mistake.
I hope my experience helps you a bit. MC is not always horrible, and I don't think placement in MC has caused her to decline more quickly.
Thanks - these stories about people doing well in a carefully chosen facility are encouraging!
There is plenty of documentation of cognition worsening after institutionalization in the medical literature - here's just one example: https://www.sciencedirect.com/science/article/pii/S1525861014001170
But, they focus more on nursing homes, so maybe a good memory care facility would be different. Especially if you've chosen one that will be a good fit for the person. What features did you specifically look for?
Stories of what things have looked like are extremely helpful. I think I’m going to even spend some time thinking about the worst reaction she could have and maybe try to sea with that in advance. Even with her worse reaction, I know this is best for her. She sounds a lot like your sister Gothic Gremlin. She is so frustrated at not being able to do anything on her own and this place she will be going to really encourages residents to do anything they are able to. Currently she is living with her sister who is almost 80 and she controls everything to try and keep things manageable for herself which is understandable but so hard on my mom.
As far as “institutionalization” that would be understandable if it even looked like this. I’ve been into some gnarly nursing homes and MCs. The place I have found is beautiful. It has a 5-1 ratio for staff. They have specific ongoing training for working with individuals with dementia and their family. It has 5 courtyards. My mom can “go” anywhere and through many doors. The main entrance is the only locked/monitored door. They encourage “jobs” and work to give residents purpose. My mom will “work” in their store. They are working to get a therapy house dog. A bus and go on outings weekly. They even take residents into places. Most didn’t let them off the bus and only did drives. They bring in animals. Take trips to a local ranch. Do equine therapy. And all staff are trained on how to work and communicate with a person with dementia. She will have her own apartment with a kitchenette and bathroom. She will be able to bring her dog for the transition and for as long as it is workable. Caregivers will help her take him out. They work to give residents dignity and I saw some smiles on residents faces which was important to me. One man was out smiling and watering his garden. The place we are moving mom to has a giant fish tank. A sensory room. An art room. Activities. I loved that even the administration staff had open doors and said that residents could join their morning meetings if they happened to come in. I never heard them say anything scary or derogatory in front of residents while touring. They usually stopped and helped a resident without apology to me while I was touring. And I have toured many times. Scheduled and not. Because that is how I make decisions. I have to see it at all times and over and over. It looks far from an institution. The residents are at all different stages of the disease and of course this is the hardest part to see. But they are so cared for and loved and I can feel that every time I am there. This is the most important thing to me.
NuttyProfessor, a good MC is a lot different than a nursing home so there is really no comparison. For example, at my FIL’s MC, they had activities planned every hour and residents were brought to the common area where they could participate or just watch. Examples of activities were wheelchair bowling, story telling, trivia, puzzles, manicures, singalongs, pet therapy, walks (inside and outside the facility), building blocks like duplos, movie night, decorating cookies/cupcakes, and many more. The activities director spent time with residents, she had a cheat sheet on each one with important facts about their past and got them talking about themselves. She was always in the common area with the group and interacted with them. My FIL is an introvert so he did not participate but he did enjoy sitting in the big comfy chairs and watching everyone.
We went and hung out with the group many times and it was the first time we had seen him smile/laugh in a long time. He made friends, he had a coffee partner, a meal partner, a neighbor who he went with to activities, a walking partner, etc. His memory did improve slightly, but his quality of life improved a lot. It was light years better than the sitting and staring into oblivion at home with no stimulation or aimlessly wandering. I tried to get him interested in activities here, but there was just something different about being with his peers.
Edited to add: not all facilities are the same, though. And they are only as good as the caregivers they hire. When my FIL’s facility flooded, he was moved to a very poorly run one, and the residents were warehoused in front of the TV or in their rooms. Most families we knew ended up relocating their LOs and we were in process, when he fell and ended up back at home (on hospice)
Yeah, actually moving for old people, and any change of surroundings is stressful. I think you could try that option, but try to explain to her why you took such a step. I`d advise you to consider the option of caregiving at https://www.thekey.com/learning-center/alzheimers-and-dementia-caregiving/how-to-have-more-good-days-with-dementia. There's nothing objectionable about that. That way, your mom wouldn`t be stressed out by the move and she`d always have proper care. I was in a similar situation and hired a caretaker for my grandfather as well. I couldn't take care of him around the clock, because I have a job and a family, and the care service really helped me out in that difficult situation.
Daughter80, that memory care place you found sounds amazing! Would you mind sharing its name & location?
Definitely that's raised the bar for what I'd like in an MC! The ones I've seen are more toward the "warehouse" end of the spectrum. Having multiple places to go & options within the safe zone...that's outstanding.
I'm still sticking to the current plan of the apartment in my building vs. my mother's long time home, but...now that COVID is pretty much old news, people in my field are traveling to conferences & meetings again, and traveling out of town to visit friends and family. I'd really like to be able to do that, but it's impossible. Even with a full time aide I'm constantly on the horn with the aide and my mom, and I have to go visit at least once a week to fill the pillbox and check on things. There's always something that needs attention.
I had an interesting conversation with my brother (the architect) about our struggles to provide Mom with a safe environment. He's taken the view that it's the responsibility of every person to arrange a sustainable living situation for themselves, and that my mother's abdicating that responsibility by refusing to leave her breaking-down, 4 bedroom, 2 story suburban house was not only irresponsible and selfish, but it set us up for a daunting task and a high risk of failure. She should have picked out an apartment in my neighborhood and moved there after my father passed away, which is what she kept saying she wanted "but not now". Or an independent living apartment.
I've taken this advice to heart and am thinking seriously about how to set myself up for my own (very likely, given family history) Alzheimer's adventure. I'm 60 years old and the future is not that far away. And I see other people starting to go down that path...research colleagues, a friend who just up and moved to Florida to a standalone house in a rural. I see the signs in her and I'm really think her leaving a good, secure apartment in a doorman building near her son was a bad decision. He has been urging her to get an Apple Watch, and I've been wholeheartedly supporting it due to its ability to call 911 automatically in case of a fall.