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Roseformom Asked September 2020

Anyone have a hard time finding the best place for your loved one with dementia?

I didn't notice it before because I was so impressed with how clean and well run my mom's place is and the great ratio of caregivers to residents, but it seems mom is kind of the odd one out. She has moderate severe dementia, but still talks and walks. Most of the people where she lives need a lot of assistance in their wheelchairs and are a lot older, and it's a mix of those with and without dementia. Those without dementia don't associate with mom, and those with it are in a later stage of dementia and don't talk. Mom looks at those with more dementia, like why am I here, and those without it she doesn't really notice. I feel like she's a fish out of water, but where she's living is a well run place with many caregivers to help her when she needs it. Anyone else feel this way? I just want mom to not only be well cared for, but also feel comfortable. It's hard to check off all the boxes, but I am extremely grateful she is getting excellent care.

sjplegacy Sep 2020
Are you considering moving her? You've already found the best place for your mother. You have to overlook her complaints. Eventually she won't be the "odd one out". As her symptoms worsen and the disease progresses, she'll no longer be "a fish out of water". You like where she is and the care she's getting. Moving would cause her confusion and still not feel comfotable for her or you. Yes, it is hard to find the best place for a LO with dementia, but it seems that you've done just that.

NobodyGetsIt Sep 2020
Dear "Roseformom,"

Your situation reminds me of my own. My mom was 90 with early stage Alzheimer's when we moved her from her home of 47 years into an ALF back in 2015. She was just like your mom. Even when she turned 95 in February she was still walking and talking until the facility had a large number of COVID cases. My mom was severely dehydrated and contracted the virus along with a couple of other things due to what I believe was neglect while they were busy trying to beat back the media who were reporting their high number of cases on every local channel.

After leaving the hospital and rehab facility, we moved her to a new facility into their memory care unit. However, she is no longer mobile and is under hospice care within the facility. They are as good of a facility as we're going to find and we're very impressed with it. The website pictures are beautiful, it's clean, her apartment has laminate wood-like flooring, molding around the baseboards and communication is great.

I think where you and probably myself (at one time) get hung up, is wanting our mom to do well with "people." We don't like to see them left out or not wanting to be social. I sure hope you don't move her especially after you've said "it's hard to check off all the boxes, but I am extremely grateful she is getting excellent care." That is the most important thing right now - the care. You could move her to what would probably be a less desirable place and the "fitting in" issue would still be there plus the care wouldn't be as good.

My mom doesn't want to be sociable - she's tired and just wants to be left alone. Because she is in the memory care unit and with hospice, she is getting a lot of interaction through the caregiver staff, the Memory Care Director, the hospice nurse and gal who comes to give her showers 3x a week as well as the Activity Director who brings her dog and a puppy she just had a litter of. They don't give up on trying to get her out and into another setting which I appreciate too. They could have just thrown in the towel and let her be. I have come to a place of acceptance with that and maybe that's what you'll need to do. If her place has an Activity Director, maybe you can talk with them to see if they have any ideas to help get her out into a more social setting depending on what their COVID protocol is.

Best wishes to both you and your mom!

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lealonnie1 Sep 2020
I think it's almost impossible for a moderate dementia patient to feel 'comfortable' anywhere, frankly. My mother lived in a regular ALF, had her own apartment and was unable to cope; the place was too big, too many responsibilities; a microwave oven she'd forgotten how to work; all sorts of things. After a bout of pneumonia, she was refused admittance back to the regular ALF and would only be accepted into the Memory Care building across the parking lot which houses 23 residents in various stages of dementia/ALZ. She's very well cared for over there and has lived in the MC for 16 months now. At first, she was ok with it. As time went on, however, she decided she 'doesn't belong' there because she's 'absolutely fine' and the others are all 'stupid morons or crazy' and she makes a circle around her ear with her forefinger to describe them. Which is not true at all; there are quite a few residents with milder to moderate dementia as she is, she just chooses not to associate herself with them. She chooses to befriend others who are in worse mental condition than she is, and then bitterly complains 24/7.

So, the moral of my story is that my mother is not going to feel 'comfortable' anywhere she goes; she will always find a reason to complain or be unhappy. For us, it's impossible to check off all the boxes; such a utopian place doesn't exist, to the best of my knowledge. MY goal, on the other hand, is to ensure that she's properly cared for and looked after by a team of people who are compassionate and well trained.

In my mother's case, she's a world champion complainer.........I don't know if that's the case with your mother. I often say I can put my mother up at the Palace of Versailles and she will complain that the gold is tarnished. People like her are impossible to please so you stop trying. In your case, you have to weigh the pros and cons. NO Memory Care is perfect; there will be issues wherever you go. You can check out other places to see what you think, but keep in mind the main goal is finding great care for her..........the rest is minor by comparison, you know?

Wishing you the best of luck!!!
NobodyGetsIt Sep 2020
"Lealonnie1,"

"...the others are all 'stupid morons or crazy' and she makes a circle around her ear with her forefinger to describe them." LOL (not laughing at the people your mom was referring to) - I was picturing her doing that. My mom will do that referring to herself when she has forgotten something!
DeeAnna Sep 2020
My Mom was a very outgoing person who could talk with anyone and have a great conversation with them. After she was admitted to the LTC facility for Rehab, she started to wheel from hallway to hallway (the halls were in a square and connected to each other at the corners) looking for my brother and myself. The nursing staff were afraid that my Mom would wheel herself outside through one of the many doors on the "Square" so she was transferred to the Memory Care Unit.

The MC door would close and lock if she ever got her w/c too close. The other residents varied in level of dementia. Mom's roommate would yell at Mom and anyone else if she thought they were "getting into her things". There really wasn't any resident that Mom could hold a conversation with so Mom sat in her w/c out in the hallway most of the time. (She couldn't see or hear the TV very well and could not use the remote control.) The nursing staff and housekeeping staff talked with her almost everytime they walked by and she really enjoyed that.

It still grieves me that Mom didn't have someone (another resident) she could talk with and have long conversations with like she did on the Rehab Unit, but her wandering made it unsafe for her to stay on that unit anymore. When Mom died, the LPN told me that she would always remember how Mom would sit in the hall, eating her M&Ms, talking with everyone who walked by. The housekeeping staff sent a sympathy card stating that they will miss visiting with her while they did their work.

Your Mom is getting excellent care so be content with that. It is never easy having a LO with dementia. {{{HUGS}}}
NobodyGetsIt Sep 2020
"DeeAnna,"

That brought tears to my eyes. I'm so sorry that's how things turned out for your mom and especially having to be transferred to the MC unit and ending up with an unkind roommate (to put it mildly) leaving her to have to go sit in the hallway just to get away from her.

I'm sure it made you feel good to get the sympathy card from the staff - your mom still made a positive impact on other people to the very end and that is something to be proud of as her daughter!
MJ1929 Sep 2020
I guess I'm really fortunate. My mother's MC has a very large common room, and all the residents are out there most of the day. They have activities for the mild to moderate folks, other activities for the seriously-affected non-verbal ones, and those who are somewhere in the middle come and go back and forth to their rooms under their own steam participating in whatever they're interested in. They have residents who vary in age all the way from 99 down to 38 (head injury or early onset Alzheimer's - I'm not sure what his problem is). They all seem very content because the staff works hard to engage everyone in one way or another every day.

I think how a place functions is all about how the organization chooses to run it. I was extremely lucky to find this place for my mother because I had no idea what I was doing, but I was referred to it by APlaceforMom.com, and their recommendation was spot-on.
NobodyGetsIt Sep 2020
Dear "MJ1929,"

I'm so glad your mother is in such a great place - it's nice to hear a positive story!
Madisoncuckoo7 Sep 2020
Oh boy can I relate!! About to move mom from skilled nursing to a memory care unit. In my case she has dementia - not terrible yet - but just had a brain bleed stroke and her short term memory is shot. She’s got TONS of energy, more than anyone imaginable ( truly ) and speaks clearly which fools people, and sometimes she does go in and out of quite lucid times which makes this situation more tragic. But there’s no way she can go back to independent living, and I’ve been wracking my brain for the best way/place she can live. And I mean truly LIVE, not feel shut away.

Often if nothing fits right, the best thing to do is to pick the least lousy option. For my mom this might mean living in a memory care and blowing out of it by mowing over residents and staff by her sheer force of nature. Then I’ll have to move her somewhere else.


I really feel for you on this one because I’m living it. If a place is clean and the staff is kind and knowledgeable, that is a huge plus. I know this isn’t great advice but I want to acknowledge that this is really, really hard, especially if the senior was difficult before the dementia. It feels like there’s no win. We just do the best we can with what is possible and available.

I’m rooting for you!
Roseformom Sep 2020
Thank you so much for your understanding! I appreciate it! I'm rooting for you too!😊🌷
karlosakitty Sep 2020
Nothing can take the place of "clean" or "enough staff to patients ratio". Well cared for is not something you can actually expect from many places these days. It is a shame she does not have more company that she can relate to but believe me I am going through a nightmare just trying to find somewhere. that takes decent car of the residents and has compassionate staff that do not abuse the patients mentally or neglect them physically.
You would be amazed.
Roseformom Sep 2020
Thank you Karlosakitty!😊
AginginPLaceLLC Sep 2020
I've worked as a NP in 18 nursing homes in the State of CT. I wouldn't want my loved ones in any one of them. The place where your mom currently resides sounds great! I can't tell if it's an assisted living facility (which I know less about) or a nursing home. If she appears well cared for, she likes the staff and they like her and treat her well, you've solved 95% of all the problems finding appropriate placement. If the facility has a social worker, ask him/her to meet with your mom to discuss any concerns she might have. If there's an activities director, ask them to meet with your mom as well. I'm wondering if your mom is still aware enough that she doesn't feel useful. I remember sending my dad to an Adult Day Care and early on it was a similar situation but they had him help bring w/c patients to different programs that he was attending and they gave him small jobs/tasks to do to keep him busy and make him feel useful - even important. Sometimes I think he may have believed that he even worked there.

I'm not sure how long your mom has been at this facility but the pandemic has really thrown a wrench into things. Isolation and depression are really running rampant in these facilities due to all of the mandated restrictions. You could also have her seen by the psychiatric provider who comes to the facility at least weekly (usually anyway), to see if she might benefit by a trial of medication for anxiety or depression - if on interview it seemed appropriate. It takes time to get used to a new environment. Perhaps you can meet with the social worker and/or the activities director to see if there are any female patients at the facility who are functioning at or near your mom's level whom she might be able to make friends with if they had the opportunity to spend some time together. Kind of like match-making but for friendship and to decrease feelings of isolation. I hope this helps. Sounds like you are to be congratulated on your placement decision for your mom. These aren't big issues. Work with them to see what can be done to make her feel a bit more at home and needed, useful, and valued.
Roseformom Sep 2020
Thank you so much for your input and ideas!!!😁 I'm going to ask them to do your match making idea. Mom is new to the place and I don't know the residents personally yet. I'm sure the caregivers will know who to set her up with if I ask them. And, the activities idea is great too. I also love the idea of small tasks to do. Mom likes to help fold laundry and I'm sure there are other things she would like to help out on or participate in.
Collant Sep 2020
I had the exact same issue when they insisted my mom belong in the Memory Care unit a little over a year and a half ago. She was very "self present" even though she couldn't remember things. Since she was in a building that had Assisted Living, Independent Living, and Memory Care, we asked if we could take her off the locked floor when we visited and down into the pub where they had a pub hour once a day. There were usually at the start about 6 or 7 women or men there. We asked if we could join them and my husband and I did most of the talking. Since Mom was self-present she could joke a little or answer some questions and I would step in if she needed help. None of them realized that she was a Memory Care person until I would tell them after a while because she would have to leave to go back to her floor for dinner. They all grew fond of my Mom and I was able to also bring her to some downstairs activities to join in with them. This helped Mom immensely and when she was on her own floor, she would also join in activities and started looking out for those that had more issues than her. The Assisted Living Pub group grew larger and they always made sure there was a seat for my mother. They were devastated when she fell and chipped her hip and was in rehab for a few weeks, always asking how she was doing. When she came back they had a card for her. We were even allowed to bring her downstairs for dinner with them once in a while.

Then COVID hit. Right now, we are finally allowed to visit her in her room, but residents are not allowed to congregate in public spaces per the laws right now in Massachusetts. I do see the 'pub' ladies as I walk through the building to get to my Mom's floor and they always ask how she is doing. Mom's memory is getting worse now, but if they open it up again, I will try again to bring her at least to the Happy Hour (with non alcoholic wine) to see how she fares.

By doing this, the residents also began to understand that Dementia is not something they can "catch" from our loved ones. Where they once would not set foot on the "2nd" floor, they had actually started going upstairs for joint activities like nail painting day and some had volunteered to go visit with some other residents.

My advice would be to see if your facility allows such interactivity with your help so your mom can be among more social situations. I believe it helped my mom's dementia not decline as quickly as it could have since she had some social stimulation other than just the Assistants on her floor. Once COVID hit and they were all quarantined in their rooms totally for 4 months with little social interaction, it took a toll on mom's abilities, but now that we are able to visit twice a week again, I see her improving. She will probably never return to where she was before COVID. I'm hoping that one day this will be over and she can return to engaging in both activities on her floor and downstairs.

Mom still looks at some of the residents on her floor and "feels bad" for some of them and wonders why they wear the same clothes every day (I'm not sure that all of them do, but since Mom doesn't remember what she wore yesterday, I'm sure she doesn't remember what they wore either :)

So, I resisted putting my Mom on the Memory Floor, but did it; found a way to give her a break a few days a week to engage socially with the ladies in the pub; and now she does belong on the Memory Floor and at least 5 residents from the Assisted Living pub group have moved up to my Mom's floor.

Not sure if this helps, but if your facility doesn't allow interaction with your help (I always had to take her and bring her back), then I would look around for one that does.

MAYDAY Sep 2020
Hope she is close by. minutes away. I hope you just POP IN UNANNOUNCED to see and spend time with Mom. best way to see how she is actually doing. Do stay and have lunch and or dinner with her, taste the food she is being fed. Do bring in fresh food once in a while. bakery, candies, pizza, snacks, etc. make it fun and happy. No one place is perfect. It also determined by the activity or energy your mom wants or has for such. Being close to home was my prioiorty. But is it what they need? thinking that one over again.
Know you are doing your best. love.

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