How to better model MC for introverts? Because it's not.

M1

Yesterday was SUCH a weird vibe day that I didn't even have time to worry about Valentine's Day. I frequently go for lunch. My partner does not like to sit with other residents, but they won't let her eat in her room. So she usually just sits at the kitchen bar, which is fine---but I was so aware yesterday that it's loud, noisy, four or five aides were talking over and to each other as they were serving, and there was music going in the background that was distracting and not calming. Additionally, there are three or four fairly new residents who are wanderers and fidgeters, who won't stay in their places and don't recognize personal boundaries. One of them kept coming up to my partner repeatedly and putting a napkin on her shoulder--very disconcerting, and she was very, very unhappy; and no staff intervened to stop it.

Needless to say, she didn't eat much lunch. I found it hard to take--and I don't have dementia or hearing loss! I need to think about this, and see if there's a constructive way I can discuss it with staff. One option is that there are two other living pods--I am going to talk to the nursing director about whether moving her to another area would be quieter and perhaps more to her liking. It's no wonder to me that she primarily wants to stay in her room.

To top it off, just as I was leaving late in the afternoon, an old acquaintance showed up uninvited and without checking with me first about visiting. She is an odd duck and my partner had a bad falling out with her several years ago; we haven't talked to her in years. (I frankly suspect she always was somewhat in love with my partner--no accident to me that she showed up on Valentine's Day). I was floored that she would do this, and I was literally on my way out with a deadline to pick up a prescription and the dog. So I didn't intervene, but I was really angry. No idea how the visit went--I'm not sure my partner even knew who she was. I did text the floor nurse to explain the situation and ask her to check in with my partner in a few minutes. I bet my bottom dollar that it didn't go particularly well. I'm considering whether to ask the front desk to not admit her if she does it again. Just downright rude, in my mind, to just show up like that. But she probably knew that if she checked with me I would have said no to the visit. Maybe I'm being overprotective, but I am indeed quite angry about this.

So--weird, weird day. Like a full moon (but it's not). It's got me thinking about what could be better for those who are introverts. And how to handle hearing loss (she's beyond aids at this point).

Chammer

It was a full moon kind of day for us as well. I even looked at the calendar to make sure!

There are folks on the forum who are way wiser than me in dealing w family members w sensory issues but I think a good way to approach the MC staff would be as an advocate for identifying those individuals w sensory issues and implementing a plan that reduces those for that resident. While it might be a little more work on the front side, I think staff would deal w less agitation if done properly. I would think it's not a lot different than "my partner/parent with dementia has periscope vision. Please approach and speak front and center if you want a positive response"

You know your partners sensory issues. Will notes in her file/record help?

marier

I agree with Chammer comments in regards sensory issues.

If you have a "gut" feeling regarding your wife's visitor I would certainly pay attention to your "gut" ask staff to stop or monitor the visit closely.

I have a sister who lives in a group home (developmentally disabled) on occasion she has had visitors who she meet at various programs she attends. These visitors have not always had the best intentions primarily stealing etc... I had to stop all visitors except family in-order to protect her.

harshedbuzz

@M1

Good Lord that is a day.

I have often thought about how a MC environment could be tweaked to better suit the needs of the residents. Noise wasn't as much of a thing where dad was. My aunt's very upscale MCF had some very loud aides which was irritating during meal service.

I found with the progression of his dementia dad seemed to develop some significant sensory defensiveness. Sound, light levels, textures of clothing and even foods impacted him in ways they never had before. Like your partner, he was very aware of the impairments and unexpected behaviors of the other residents and wanted nothing to do with them and yet they were hell-bent on providing socialization opportunities at mealtimes because dad tended to keep to himself. What worked best was to seat dad near the window facing the courtyard rather like sitting at the breakfast bar. They did let dad have meals with us in his room since we'd be there if he choked.

I would sit down and ask for help in resolving this. I don't know if changing pods would help. Your LO might need to get used to new staff and even if it's currently calmer, that will change with resident turnover. IME, facilities usually balance their aides' workloads by evenly distributing the wanderers and those who have a tendency to invade the personal space of others. Mom felt like Dad might do better in a different neighborhood, as they called their pods, until she walked through the other 3 and found them to be very much the same in terms of population.

HB

Mint

I agree, Im somewhat an introvert and i definitely like quiet more than noise. Noise really gets irritating to me.

My experience with this type of setting has been like yours . A guy i knew was there and blind. He did not want to eat in dining room but was forced to. He was afraid those that were coughing could be too close to his plate . Where a lady is that i visit they have to pay extra to eat in their room.

Losing control over things like that has to be hard. They even assign them where they have to eat. Someone on here recently explained why and i get that. But can you imagine as an individual 90 years old being told where you have to sit to eat if you are with it. Really takes their individualism away. Wish they would work a little harder at preserving that. Have never worked in that type of facility so may not understand as i should.

trottingalong

My DH is an introvert. Lately I have noticed that Loud sounds tend to irritate him more. Our doctor has a very loud voice and laugh and it really bothers him, even though his hearing isn’t what it used to be. If I had to place him somewhere like what you are describing, it would literally be hell on earth for him. He’s always been social, but on his terms only, with those he chooses. Interaction with others is not always the right thing for everyone. I hope you can speak with staff and some changes can be made. I’m interested to hear what others have to say.

JeriLynn66

The behavior of some people never ceases to amaze and disgust me. M1, I would put that Lady on the NO Visitor List so fast her ignorant head would spin!

And I am so sorry you had that to deal with on an already very difficult day.

M1

Thank you all for the input. Yes, i definitely think a sit-down with the head of nursing is in order. I don't know whether the other two pods are the same or different. I think there's a chance they might be quieter, but I will investigate before we make any moves.

Here's another example: there's an overhead light in her bathroom that never goes off (supposed to be safety thing). But: the bulb is flickering, and it's right in her face given where the bed is located in the room. I've asked twice for it to be changed, at least--but it still hasn't happened. It's just so darn exhausting to have to YELL in order to get heard. But, I will darn well do it, too.

CindyBum

Hearing about this situation really ticks me off and disappoints me that a MC facility wouldn't consider noise issues for folks with various forms of dementia. I'm not a professional in this and even I know that would be unnecessarily riling up many who have this awful disease.

I'm so sorry you're having to yell about this MC1. Go get 'em!

HollyBerry

It was hard to tell from your comment if it was the staff talking loudly, or the residents, but I do remember the same issue with dining room staff at my mom's AL. Clanking carts and dishes, people talking over the kitchen noise and each other, and then the nursing assistants trying to get everyone to the dining room for a meal. Alternatively, the place was silent and nobody talked to anyone else and it was horribly depressing. I don't know what a happy medium would be, but if it starts with dining room staff, maybe that's the conversation to have with your contact person.

This is a good reminder that I really should start making some visits, just to check out what's available around here in our price range. I think a visit at mealtime would be an important one to make.

l7pla1w2

https://alzconnected.org/discussion/comment/198368#Comment_198368

Would it possible for you to replace the bulb yourself, maybe one that throws less light?

ThisLife

My H is an extrovert, but I noticed at home that he was becoming even more sensitive to light and sounds. (No hearing loss.) Then the MC put a loud alarm (think fire alarm) on an exterior door near his room because the alarm that was on all the other doors wasn't loud enough to be heard at the other end of the unit. What?!? I'm hoping the next placement will be better, but boy do I have a lot of new questions now!

gampiano

This is such a valid concern. The day program that we have in my community is very social, and in my opinion, over stimulating for many. My husband was very noise sensitive, and liked his quiet time. He liked music, but not on high volume, and the program here was too much for him. There are some who enjoy all those activities, and for them, it's great. While I was hoping for a few hours of respite for myself, I had to change course and take him out of that environment as it was just "too much" for him..

M1

Yes I have definitely thought of taking my 10' light bulb changer and a bulb--but this is kind of a special fixture and I'm not sure I've got the right kind. I may just take the pole and take the darn thing out, I could at least do that, and put a nightlight in the bathroom. Good idea!!!

And: gave the former friend's name to the front desk. They said this doesn't come up very often, but we're not the first.

Quilting brings calm

M1 - the light issue needs to be handled - if not for your wife, for others who are photosensitive. That kind of thing can trigger a seizure for those people.

M1

Indeed qbc. I'm going to ask again tomorrow and if not dealt with im going to take the bulb out myself, as suggested.

LaneyG

M1 so sorry for all the aggravation being thrown at you. This thread has been a real wake-up call for me. Given the money we have to pay these places, i would expect greater effort in seeing to the needs/requirements of residents as individuals. I do know that may not always be easy and some behaviors are difficult to manage. How are the aides when not dealing with the meal trays? Do they spend quality time overseeing and getting to know residents or are they conversing amongst themselves and their cell phones? The lightbulb thing is inexcusable. You have some good ideas there but you should not fave to deal with it. Maybe another option is to go up the ladder and ask if it’s necessary for you to send someone in and give them the bill or deduct it from the rent. I don’t know… but the idea of blinking lights…and while trying to sleep…Our LO’s go thru their own personal hell and shouldn’t have more piled on to them in a place where big bucks are being paid for their care.

If I sound bitter I guess I am. I was appalled at the quality of care, stupid decision making, and incompetence of the floor staff on the Geri psych ward where my husband was. We are still raw from the experience there. ( I know what good Geri psych care looks like as I worked on such a unit back in the 70’s. I also know things have changed since then.) While he was there I did check out 3 MC care facilities. They were lovely and the people giving the info/ tours sure know how to paint a rosy picture. They require big bucks and my expectation would be that a certain level of care quality would be the norm. I will be looking at MC in a very different way. Sorry for the rant. Sorry if this was a downer. It’s just where I’m at these days I guess.

M1

Laney i completely agree. Our hospital experience was also quite difficult, there were multiple medication errors (she didnt get her regular meds for ten days) and I had to fire the attending MD who told my partner it was my fault she couldn't come home. I made Medicare and state complaints that resulted in sanctions and never got a single bill for a three week stay.

This is our second care facility and believe it or not is a huge improvement on the first. In general I do trust the staff and the aides very much, but my overall point is that many aspects of group MC living, especially meals and activities, are just not designed with introverts in mind. I am definitely going to pursue all of it and it is very validating that many here share my concerns. I think i can continue to advocate for my dear partner in a way that improves their care and that's the way I'm going to frame it when i talk to the nursing director.

The majority of the population are extroverts, and that is what dominates in most groups and certainly in the business world. We intrverts learn to function that way, but it is very tiring to have to do so.

ButterflyWings

M1 - I could not agree with you more, on all your comments. You are not being overprotective in terms of the person who totally violated boundaries. Block her. Your LO cannot, but probably would.

As for the observations of how the MC experience needs to be modified to offer introverts a more supportive, respectful, and comforting environment, you are likely identifying a legacy for you and your LO. Even just raising it here, and planting the seed. I have only had a brief experience so did not comment earlier, but a week for my DH in MC totally affirms what you and others are raising here. In respite spaces and also with in-home HHA agencies, the current system definitely ignores individual needs of PWD, and yes! Everything you said about how stressful and even traumatizing the status quo must surely be for introverts (with AD, in our case).

And the dismissiveness toward we primary caregivers as well, is irritating and wrong. As if our advocacy is throwing down the gauntlet. I have had to ask repeatedly for simple things that others should have noticed or at least addressed, once I asked. Not lightbulbs (I'm with you on changing it yourself and sending the bill but only if your back was not injured -- be careful!), but for example a couple of aides automatically speak VERY loudly to DH. I have pointed out that it can come across as yelling and he is not hard of hearing just because he is 80+. If he doesn't respond it is because he cannot (aphasia) or just doesn't understand you (late stage dementia). Have they adjusted their volume yet? Nope.

I agree there is a LOT of work to be done to humanize our PWD LOs and raise the expectation level for respecting them and their spouse/caregivers when we raise concerns or make suggestions that are important to implement for their safety &/or quality of life.

I hope the rest of this week is better for you and your partner.

Joydean

M1 I agree with what you are saying. Butterfly Wings you are right about the loud voices. We finally got some home help and this lady has 20 years experience working with dementia/alz patients. But goodness she has the loudest voice when speaking to my dh. I finally had to tell her he can “he’s not deaf, he can probably hear better than you. So please lower your voice.” I still have to remind her at times.