First days in assisted living with MCI

Fairyland

TLDR - don’t move LO into a facility on a Friday. Be warned.

I felt pressure to get on with it because I have to go home to my country in a couple of weeks, but the first availability for movers was Friday morn, which they annoyingly switched to afternoon as I said in the other thread.   It’s not a disaster but is making mum more sad than necessary.

Mum is in place and most things are sorted.  She has a very nice one bed apartment. All that is missing is her pictures on the wall, as she refused to let the movers take them, so I am bringing them over gradually. 

The first night I was still there at 10 pm and shattered after packing moving and unpacking all day. I went to the shop to buy some milk for her tea (essential for her). She got a little sundowny -“why are we here? Do I live here now? But I don’t have my things” (surrounded by all the things).  She has asked several times where her panty pads were and and could I get more (she has enough to open a store in the same drawer of the same dresser they have always been).

I came back the next morning with some forgotten items and found she had not made her tea despite everything familiar and being laid out ready in the kitchenette. She is being taken to each meal. I organised a few more details then left. Later she called the house phone (the only number she remembers) from the front desk, and asked me to get her a cellphone. I said who did she want to call, did she need something? Yes- she wanted to call me because she needs a cellphone. I explained again that she has a GrandPad cellphone on her table and to press the picture of me or her SIL to call us. Oh that’s right! Also she can’t turn her tv on -older simpler remote but she isn’t used to it- could call for help on her wrist button but just won’t I imagine-the staff would be happy to help-weekends are boring for them too!

I told her to go to the movie. This morning I called and she had gone to the theatre room, no one else was there, then she stopped the film to have “lunch” (evening meal), then went back to see it, alone, to the bitter end! She couldn’t remember the film and it was silly.  

She can’t figure out what is on and has no print out of the activities- guess I will have to do that myself! I will mention that to the activities coordinator.  They gave endless paperwork mainly about death and sickness etc.

Today I will go over and take her out to the symphony- I get that she shouldn’t go out now, but it’s the last performance of the season and the one thing she is aware of from local tv announcements, and tries to book. So we will go. She asked if I had asked the facility. I said no she is allowed to be taken out and I don’t need to tell them in advance. 

She was put in an institution by her mother as a child so this is not a great experience! But, needs must.

My daughter 21 is coming back in the summer with me and is being really supportive to me by text. She is doing vet work experience at a farm vet, so this will be cool for her as well as an eye-opener.

Quilting brings calm

Yes, weekends at the AL can be boring.  There’s usually minimal staff so that meals, medications, etc occur but no real activities.  At least at the one my parents are in.  The nurse works weekdays, as does the office manager and the activities director.  There may be a group of woman that meet informally for card, board games, or coffee.  Their ‘four seasons ‘ room has a puzzle set up at all times, along with a pool table and shuffleboard.  The theatre is own for anyone to watch a DVD at any time. 

My Mom can never seem to locate or look at her activities or meal menu calendars.  Their AL keeps extras of  the newest ones on the counter at the front desk. 

Since there isn’t much going on during weekends, I think it’s a perfectly good idea to take her to the symphony for the final one. She would just sit alone in her room otherwise.  She will feel a lot better about things during this next week as she meets more people and gets adjusted to the daily routines 

Fairyland

Thanks for the reassurance that things should look up, QBC!  I hope so, I know it could be so much worse than it is. I doubt mum will be able to make any sense of the activities schedule, but they email it to me so maybe I can prompt her too by calling.

Mum answered her Grandpad when I called to say when I would pick her up (after lunch). Someone apparently asked her what she was going to wear, to her dismay, so she had to change. She said she didn’t have her winter coat, so I showed her it hanging in her closet. Oh Boy.

The symphony was wonderful, they have also just won the IL state award for professional concert performances, or something. What they played included “Pines of Rome” and it was really amazing. I don’t even like classical concerts that much. 

Mum ran into someone she knew from her art days and remembered their name, another couple struggling to walk and clinging on in their condo, they said! And they couldn’t remember HER name, which gave her a “one up”.  I was delighted to hear mum say, no she doesn’t drive anymore! Up to now she always says yes (not for over a year). 

Most of the audience is “mature” to say the least, but they are very appreciative and generous with the standing ovations. I worry about them falling over. 

I dropped her to new “home”, she went straight off for dinner with the other inmates as she calls them-said one told her she has been here SIX YEARS, “and she looked VERY old”. She says they are too deaf to hear her ask, to pass the salt and she can’t reach it.  She has a quiet voice, and an accent. I said, mime it! But she won’t.

I put some things in her fridge, though I think she never opens it. I turned on the tv to a channel she should like this evening, she will fall asleep anyway. I turned on the lights, organised nightlights, tea cosies, set up ice cube trays etc. And took away the flashlight needing new batteries. And set her selected paintings against the wall for installation by the staff. They will look nice and maybe give an idea of what she is like.

I am ambivalent. It’s not ideal by any means and the cost is so eye watering, especially if she ends up not joining in anything. I do feel much better now I have had more sleep, a walk, cooler house, healthier food, less despair!

Fairyland

Uh-oh. Mum has figured out how to call me, and is complaining WHY AM I HERE?!?

She keeps saying there is nothing going on, except meals. Everyone goes to the dining room at 7 am and waits, even though breakfast starts at 7.30. When she goes to any meals, everyone is waiting to eat, eating up the minute it starts, then finishing and leaving. She is not all that interested in food.

She went and found a puzzle and sat in a room by herself, then got bored and put it away. TBH I am surprised she tried! 

I told her to press her wrist button, which was a first for her, and ask where the afternoon activity was (some sort of well-being session today). She did it! Major triumph. I heard the staff member come in, and loudly tell her when the next meal is (yet again) - in 2 hours. 

Maybe that IS all that actually happens? And the activities scheduled are not really on, or no one participates? No way is she going to willingly stay there if all that happens is 3 meals a day.

I told her to ask again, so she was told the day’s activities are posted on a paper by the elevator. Would she like to be shown to the elevator? So I said, ask to be taken to the ACTUAL room the activity is in, since she doesn’t yet know where anything is.

2 minutes later, the phone rings again -guess who? Mum. So she was taken to the room, but the session was over. I said the schedule says it starts in a couple minutes, so how can it be over? The staff member apparently said, “in there” and left. 

I said go back and wait a few minutes find out if it really isn’t on. I am going over later myself so will find out the story for today. I am trying to get her to take initiative but it is clearly not working out so far.

Now, do I complain? (more high up, since I already have messaged to the move in coordinator and had no reply). Or go over and investigate the facilities more myself? To see if these first impressions are true- that the activities schedule is fake, or everyone there has no interest in the activities provided, except meals.

Also she can’t get tv on or change channels - doesn't know what buttons to press on her tv remote, which is also difficult as it is different to the old one. She never could work anything electronic at the best of times. Trials and tribulations!

RobinNicole

Hi Fairyland,

I am happy your mom is safe and you are getting rest.  I am hopeful your mom continues to settle in and things get better.  I completely relate to your posts as my mom is three weeks into her stay.  She passed the honeymoon phase and is now asking when she will go home.  (We told her she is at a hotel as truthfully her house is in serious disrepair downstairs and is under construction- she does not know this is her forever hotel)

I put a land line in her room - which she did not use, but we called her, and then she lost the handset.  No one has found it so we are not replacing.  Now she has learned she can ask the front desk or an aid or a nurse she can call me- which is good and bad.  I am relieved she can reach out but the calls are confused or mad or sad.  Most times I can pivot her and have her laughing by the end, but last night she was mad at me and although she probably forgot the call in a minute it lingered with me.  It was almost 8 pm so I will be sure the staff knows to not place calls during later hours.  Others have advised in threads that we can choose to not answer the phone- and maybe you can do that some times?  Hard but they will forget and this gives you a little more peace.

As for activities we were emailed (after I reminded them several times) the activities calendar for the month.  that is helpful as I can plan visits for when she is most likely happy and engaged (other suggestion I have seen here).  (And maybe that way you can call her during or before or after an activity when you go home so you feel good about her time.)  There is also a list of activities at the front desk (which seems to be the hub for residents as they ask her to call their families, ask about upcoming activities etc.). I have asked the coordinator about her engagement and the exec director- and ever since I get a weekly update (probably not everything) but some info on how she is engaging, and even pictures of her with the group.  I would recommend you asking more.  I was recommended to be very clear in the beginning of what I would like for my mom (and that is hard as I am not a demanding person) but that would be best for my mom.  Otherwise they settle into the routine that suits them on updates etc.  I do not get long details but they respond (like the medical coordinator) and updates (activities).  I hope they do have more activities for your mom than she indicates.  Even if she is around other folks that is better than being home.  

As for meals we found there is a means girl table ( I kid you not) and these women are not mobile and my mom is, but clearly they have been there a while, so my mom has been vocal on where she wants to sit (with others she deems like her).  But they actually placed her at a table with a gentleman further along than my mom but the aid who assists him eat is chatty with my mom - and she flirts and is completely happy.  She seems to love the staff and staff knows her very well.  I would definitely be a little chatty and inquisitive with the staff while you are here so they know you are looking out for your mom.  

My mom too does not remember how to change the channel on the new remote for her tv. But have instructed the staff to turn to mom-friendly channels when she is sundowning and I have posted up notes for my mom and staff to turn to specific channels.   It’s tough- 3-4 weeks ago my mom was home, in full command of her tv, the phone, her laundry, gardening, and now she asks for help with the phone, the tv etc.  But I do know she is around a lot of people, she walks all over the place, she eats three hot meals a day, and she has music and activities.  She may be sitting by herself part of the day or at night, but she is ok and safe.  I hope your mom finds some friends or aids that she likes and starts to settle into her new normal.  You are doing a great job- and we all know this is not easy.  Thinking of you and your mom

Fairyland

Right back at you, RobinNicole! It’s so exhausting and I have a backlog of my work after the last few days.  I hope the worries are subsiding as much as possible. There is one lady in a scooter I noticed before, who keep commenting jealously about those who can walk, so she chatted to mum apparently and added to the chorus of, why are YOU here? Since mum can walk and seems ok to make basic pleasantries. This makes mum wonder herself then she gets annoyed and calls me to ask, again.. It is not helping at all. 

So assisted living is for the chronically ill and mobility impaired, and memory care is for stage 5-6 dementia. There needs to be a middle school in this system!

I asked the activities director to physically take her to the exercise class this morning, then I called at that time and no answer - here’s hoping she went and found it on- and will therefore meet others more like herself (she likes exercise classes).  You’d think they would like new residents to try the activities? There are several on today, I told her she has to choose and do at least one.

My cousin called me, who has issues of his own, and said he would visit her and “do battle” with the facility and if anything was not right, would take her out of there!  Hope he does visit, but doesn’t wind her up any more, but hey, she can go live with him if he likes!

I went over after dinner (dumb move) and replugged in her phone, which had “stopped working”. Oh boy. Her tv similarly “doesn’t work” - until you press the “on” and “change channel” button...then miracles! It DOES work again. I have ordered a Flipper old person remote, but honestly this one really is pretty simple too. I put on her favourite 30 minute news program she waits for all day, and she promptly fell asleep.  Then I had to go home and do some more of my work, so she wasn’t happy. Yep, need to change my schedule so she can go off to dinner and I can leave her tv on.

She had actually looked in her fridge and found the ice cube tray I had filled, it wasn’t set so I told her to turn the setting to colder- and she actually did!!! And it had frozen nicely, Wonders never cease. So she got her usual bedtime ice water drink, with any luck. 

But she kept saying, sadly, do I live here now?  And, am I never going back to the house?  I just said, yes, for now. And, we’ll see.  

RobinNicole

Fairyland,

While this is so hard its good for us to get through our work (as that just adds to our stress).  Last month was a blur and I am very behind and am trying to catch up as well.  Hope this will allow you to settle in (and its a new normal for us as well) so you can catch up and take a breath. 

As much as our LO notices there are others that “seem” older or worse off we know and see others that are cognitively far better off than they are.  There are a few in my moms place that seem to be living there without much need for anything except a safe place and company.  I hope your mom finds some folks she likes.  If this helps my mom apparently has started choosing tables for meals and who she will sit with in activities.  It is definitely like middle school in finding friends!  3 weeks in my mom is starting to figure out what she likes.  She still thinks she will go home and that is ok.  I told the staff I want them to say - house is still being worked on.  So I like your “for now” response.  Hope that keeps her calm.  Glad to hear your mom likes exercise!  Good for them and hopefully tires them.  My mom does as well and apparently is doing more now than when she first came.  So hopefully that is a time and place for your mom to be happy and make friends.

I think your cousin will be very helpful to give you another set of eyes and another voice about your mom.  I have recruited my brother’s wife and my moms companion (which we have to scale down due to all the costs).  The companion has been invaluable asking lots of questions and watching (even after she “left” the visit) to give me the scoop and watch for red flags.  It will be great to hear what he sees and thinks.

Please let me know how she likes the flipper.  I noticed in my moms room they have a new tv remote that only seems to turn on / off.  I could not switch the channel with it and had to do it at the cable box.  I think they did it on purpose as I had advised two channels that she likes- so it is now set to go on to one of those channels.  And she lost the handset for the phone so I am going back old school and getting a landline phone with handset attached to base.  I have posted instructions on how to dial out (you have to use a 9 first) on a poster by her bed.  But regardless even if she forgets how to use it the staff can help her with the one that is in her room.  

As for fridge- funny your mom rediscovered it- my mom did too.  I had put some water bottles and a few diet cokes and she just this week started drinking them and putting her water bottles back in to get cold.  Guess they learn the ropes of their new world too.    Wishing you and your mom more progress and peace.  Thank goodness for the board and all the wonderful people who share their journeys, joys and sadness as we all learn from one another and feel less alone. Thanks all

Fairyland

Hey RobiNicole

Hope you are also gradually getting into a better place along with your LO.  Here we are at the end of the first week - phew!

I have been over every single day, carrying in a box of stuff and out a box of (different) stuff. I was shamefully irritable with her last night, forgot the “never argue” dogma, over something silly. I got her to leave the apt. And explore a little, it was like a tomb after 7 pm -and she said the long empty corridors reminded her of “that film”. “The Shining?” “Yes, that’s it.” She ain’t kidding.

My aunt texted Weds night suddenly saying in short she had called my mother, mum was miserable and aunt was going to “take her out”. First I thought, what, for a pizza? But she meant For Good, to stay with her (that will last 5 mins) or dump her home alone I guess!  Great, we have just handed over thousands of dollars!  

On further inquiry, turns out she was talking about a call to mum she made on a Monday afternoon. Mum by then had been there all of 3 days, including Saturday and Sunday which was a mistake on my part, admittedly, as it was very boring and unsupportive to engage her (which continues, unfortunately).. 

So - A) It took aunt 3 days to inform me of mums despair Monday afternoon THAT explains mum’s agitation and bitter complaints when I got there Monday evening, which has not been repeated since then C) that ALSO explains cousin’s (her son’s) call to me Monday night. Him, I think he is on a slippery slope to alcohol induced dementia but I thought auntie was a bit more with it. Nope, Loose Cannon alert! She also told mum after their tour that she would collect mum instantly if mum was at all unhappy and she could live in aunts basement. 

So much for helping mum adjust and make the most of the company, exercise, varied food, no worries about home maintenance, and absence of thefts and continual scam bombardment from all directions. And so much for helping me return to my life until August without worrying about mum laying on the floor for many hours undiscovered after another stroke, after giving up 13 months of my own life and damaging my kid’s future (she missed a crucial exam).

Meanwhile mum mainly just sits around dozing except for meals, and her ankles are swelling up. I have asked over and over for her to be taken to activities for the first week, but only when I complain is she prompted to go to one. The exercise classes are 15 minutes long- she was doing one hour 3 x a week, as well as her own housework, sweeping, climbing stairs at least once a day etc.  She has no friend or buddy who will go with her or encourage her to go to anything, and has no idea about the daily shuttle to go shopping, or anything else. Handing her stacks of schedules is not going to work, especially right now when she is extra muddled by the move. So that promise by the facility has not been fulfilled. Most of the inmates barely leave their rooms. the numbers of residents moving around I have seen have all been people going to and from 3 meals a day.

I am meantime living  at mum’s house trying to work full time (online) and figure out how to keep the house safe when I leave it empty again for a few months. I had to get a long expensive plumber visit all morning and that wiped out a lunch with an old friend, my first outing planned in months. I have decided I can’t cope with clearing the clutter-crammed house, especially over mum’s objections, never mind renting or selling it. So another financial drain in taxes, security and repairs. The aunt checked it weekly for her last year but is no longer willing, and I don’t know anyone I would trust. Even my old friend is out because I know her son who lives with her got arrested recently for theft.

In late summer the plan was,  I come back and decide whether to keep mum at the AL or take her home with me - if she doesn’t get any benefit there’s no point going on handing them all her savings, I can make better use of it.  That was my original plan for her, but pandemic supply chain has made my house refurbishment too slow, it’s not ready for her,  and I need to go back to work in person now.

SusanB-dil

UGGH!  ((hugs))

dealing with enough and aunt not only not helping, but seems to be hindering...   so sorry.

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RobinNicole

Hi Fairyland,

I am so sorry your aunt muddied the already muddy waters.  It’s enough of a change for your LO to move, but to have family feed into confusion / discomfort of the new resident is selfish.  I was hoping your mom was being prompted / escorted to activities.  I know every place is different, and staffing shortages are affecting many places, but my moms plan includes escort to meals and activities - but she “is on her own” to interact, chat etc.  After a month she has her routine and knows which activities she likes, and which she Does not.  She seems to be looking for visitors in the afternoon, and has called a couple of times asking when the house will be done and if I am picking her up to go home.  But even with those calls (which upset me-more than her as I know she will forget) she is settling in.  I was hoping the same goes for your mom.  Like people have said on the boards it takes time for them to settle into their new normal. Have you spoken to any other families about their feedback?  Or candidly asked someone like the receptionist about the staff and engagement. Did you have a second choice on facilities?  Is there a local alz group you can call to ask about this place - and others?    I used a non profit to help me short list facilities when I was “looking ahead” - which turned out fortuitous as this came much faster- but I recently contacted him to ask some follow up questions and he had so much info on the facility and others- staffing etc.  

However maybe you do want to research community homes like mentioned above.  I would have looked at that as well, but the nearest one was not doable.  A friend had her mom at one and loved it.  Smaller, but like a family with nurse on premise.  But people around.  

(By the way -like you I am the general contractor for my moms house- a lot of work, coordination, over seeing it, paying the bills, making decisions etc,  I find it sad to clean things out and up.  I started it, but do it in small chunks as its so sad.  Decisions will need to be made, but for now I am just treading.

Please keep us posted and I will be thinking of you and sending hopeful thoughts for positive next steps

Fairyland

Thanks it’s good to know I am not alone, and to get those other ideas.

Things are better so far this week, in some ways, so I think I will start a new thread.  

That first week I really had problems keeping putting one foot in front of the other! I really needed some processing time. Wow.  

I’m working hard to give myself some credit for what I HAVE got done, and what has gone well rather than what I didn’t manage - so far!!!