How to prepare for move to MC

Daughter80

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. 

May flowers

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. 

Daughter80

Thanks so much. I think we will wait until the day of as you suggested then. My mom fell last night so that may even be part of the story. Such a stressful time. And I definitely fear the future move, but we may need to move her even sooner with this fall just happening.

Lindsay22

Hello. I didn't tell mom anything.  The morning of the move my husband came to get her and took her to breakfast and for a hair cut while I went into her place and packed a small bag of just the essentials she would need for the first week or so.  Then I met up with them at the MC and we went inside to a "doctor's appointment".  We had organized with the facility before to arrive just before lunch so we went to her room, got her set up telling her "you are going to stay here for awhile" and reassuring her. Then it was lunch time so we said our goodbye and the staff took her to the dining room.  They advised that we not visit for a week or two while she was adjusting to the new routine but after a week she seemed to be doing well so I went to visit. Early on I was visiting every few days, she has stepped up to a higher level of care now so I only go once a week.  She never asked to go home but did ask about her cat and I assured her we were taking care of him which she accepted.  My mom was already doing pretty poorly at that point so I knew she wouldn't remember from one day to the next so telling her anything in advance would just cause more anxiety.  I honestly think the weeks leading up to her move to MC were the most stressful of this whole journey for me.  Once she is there and settled you will hopefully have some relief. Good luck!

MN Chickadee

How short is her loop? My mother's was so short by the time we moved her to MC. Having the doctor discuss it a few weeks in advance would have been pointless, she would have no memory of it by the time it came around. Telling her "your doctor told you this" or "we discussed this" almost made things worse, because she didn't remember it so thought we were lying. We never did tell her we were moving until we were there and even then always called it temporary. I got the room ready ahead of time then "stopped in for lunch" at the "senior center" and spent the day at the MC doing activities with her. In the afternoon I told her the doctor wants you to stay here a few days and I will be back tomorrow to see you. If she has some other plausible reason for rehab, like recovering from the fall or to get some other condition under control even better. I had to have staff distract her and slip out (as I did for visits for many weeks after.) No lengthy sad goodbyes, just a matter of fact/no big deal kind of approach. Of course I went outside and cried my eyes out but I couldn't let her see that. 

My mother's adjustment took a long time. Visits from family were triggering and we ended up staying away more than a month. Everyone is different. You figure it out as you go. Despite the rough transition, in the long run she did not decline from the move. In fact she actually seemed to improve some. She was finally getting the care she required. She thrived on the routine and structure, the medical oversight was far more than we could provide at home. She ate well and put on some weight.

The days and weeks after will likely be a very difficult time for you both. The sorrow and undeserved guilt are immense, the grief for what you are both losing may be crushing. Just try to remember it should improve and getting your mother the care she needs is good. 

RobinNicole

Hi Daughter80,

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!

NuttyProfessor

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.

MN Chickadee

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. 

harshedbuzz

Daughter-

When we placed dad we presented it as a doctor-ordered stay in rehab. Dad had been in rehab after a hospital stay and loathed having a semi-private room so we sold the new place as a fancier rehab with private rooms and gourmet food. At least the room part was true. To that end- much like Robin Nicole, we decorated it kind of like a Holiday Inn- comfortable but not entirely familiar. Later, I brought a few things from home but I don't think that mattered to him all that much aside from a portrait of my mom that some other resident wandered off with almost daily. 

Dad off, I drove both parents to the facility where the activities director swooped in and took dad off to the main activities area just as they were distributing ice cream ahead of the matinee. She suggested bringing him at the start of something he'd enjoy and when we arrived she introduced him to two of the friendlier and more capable residents and sent us on our way. I highly recommend someone go with you for the ride home even if they just meet you in the lot and take you out for a latte or glass of wine.

Dad's MCF left visiting up to the family as they would know what's best for their LO. Some people will more easily settle/bond with caregivers without the trigger of a family member while others need the reassurance that they've not been abandoned. We did visit the next day and explain that dad needed to stay "doctor's orders" and that we wanted best available care for him- rinse and repeat. For the first couple weeks I went along on all my mom's visits as he could get pretty nasty. I also micromanaged them so that they took place outside the privacy of his suite because he was still enough on the ball to showtime if he had an audience. 

Dad took a daily cocktail of meds and we made sure he had them day of the move. I also double checked his meds to be sure he was getting what he'd been prescribed earlier-- nothing more and nothing less. We switched him over to their in-house gerontologist and geri-psych. The gerontologist discontinued some of dad's meds- with mom's OK- to a more palliative approach. The geripsych reviewed dad's meds and felt they were totally appropriate and left them as is.

Good luck. TBH, I found the weeks ahead of dad's move to be some of the most emotionally difficult for me personally. It was much better once I'd gotten him there and saw that it would be OK even when he still was angry.

HB

harshedbuzz

NuttyProfessor wrote:

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.

HB

Daughter80

Thank you all so so so much for sharing your thoughts and stories. There is validation in hearing that this time before the move is so hard. The not knowing what to expect is so scary. Every night when I lay down I imagine her her crying and screaming when I leave her. But I hear that may not be the case. I hate that she is so “with it” as far as her language and ability to tell what she is thinking and feeling. They say she presents well. Yet her loop can be only seconds at times. This past weekend I offered her some cornbread at a meal. She said she only wanted to split a piece. I cut it and went to place it on her plate. When I told her I had her cornbread she looked disgusted and said she didn’t want any. Whoa! That’s so fast to forget.  And hearing “undeserved guilt” took my breath.  That’s such a good explanation of part of the feelings. I feel like I should care for my mom and not “do this to her” but in all reality I didn’t do anything except try my best to love and care for her. As well as love and care for my children, spouse and aunt. My aunt is almost 80 and caring for her now.  They live in a two bedroom indep living apartment.  It is absolutely too much for her. My mom is young 67 and that means I am young. I have a full time job and 13 year old daughters. It wouldn’t be fair to them to have her live with us full time. And I literally would have to close my business if my mom moved in. But still the guilt can be overwhelming.  Thank you all again so much for the love and support. Prayers for each of you and your loved ones.

GothicGremlin

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.

NuttyProfessor

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?

Daughter80

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. 

May flowers

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)

May flowers

Wow, daughter, I thought my FIL’s MC was great - that is fantastic!

Daughter80

Your FIL’s MC sounded very nice. Totally agree it is the caregivers that really matter. Thanks again to everyone  

gungunum

 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.

 

NuttyProfessor

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.

Daughter80

Nutty professor I wonder if you could find a place with a continuum of care. You could almost find a place for you and your mom now. Of course you are pretty young so it may not be time. There are places that have IL, AL and MC all in one place and residents move to specific apartments, halls or even get more help where they start as the need increases. For example one place I visited was IL and AL, but residents had their apartments anywhere in the building. Care just came to their room as they needed it. A care plan was created for each individual. You could even be in a two bedroom and one person could need no assistance while the other had a care plan and needed lots of assistance. Then having MC on site would assure that you would have that level of care when needed. It sounds almost like a necessity for anyone with dementia.  There are so many options and nice places out there. I live in Colorado Springs and almost all of the places I visited were very nice. Have you looked into a day program for your mom so you can get some “time off”. These places that i was talking about also had respite stays.  Your mom could stay for a week or a month on a day to day prove. It’s costly but could be worth it for the ability to go on a vacation or if you were ill. Always good to have backups as far as help and care.  If you had some time to visit places I would highly recommend it. And knowing how you would pay for a place is important. I know we can do private pay for a while then would have to be in a place that accepts Medicaid or our state program called PACE. I already know exactly where I would move mom no matter what we have for money. It’s a lot and I was so scared at first but seeing these places has completely helped me in the process.

Slipkoot

I think Daughter80 has a point. The MC community you choose will become your mom's or dad's new home. Though it's encouraged to create a homey feeling from the start by incorporating a senior's decorations and personal items into the space before the move if possible. Aim to move during a care activity your loved one might enjoy, like an art class, singalong, or game of bingo. Visits made during mealtimes, activities, or games help divert attention from potentially volatile emotions. It also signifies a visit's unmistakable conclusion, making saying goodbye simpler.