New -advice for mom moving into senior living center

Anonymousjpl123

Any advice would be cherished. New to this board. Since my dad passed away a year ago my moms memory issues went from noticeable to really alarming. They were married 60+ years so this makes sense, but it got bad. Thank god they retired in 2019 so the move from their life house to retirement apt was done. Seriously, thank god they did that together. After a year of enormously stressful calls from her condo, neighbors, and adult protective services, my sister and law and I made the super hard call to tell her she would move to someplace safer or get full time help. Thank goddess we found a place that seems good near me. She’ll start in independent living with help, but they think she will wind up in assistive living and I’m totally good with all of it. Let her start by loving her apt with dignity. It’s a big move though. How can I help make this better? Your wisdom is so appreciated. And of course now that I see safety in sight, the tears for the mother I had are falling. She has a great deal of ego associated with her intellect, and even though she is going to the best possible place with likeminded people it’s so hard to get used to this version of her. How can she make friends when her thoughts are all over and she drifts into old memories so quickly? Will she find others like her? Can they have fun?

dayn2nite2

She is being set up for failure in independent living.  She needs more.  Allowing her to be in independent living will do more damage to her pride and not stop the calls to you.

toolbeltexpert

Welcome to the forum. It sounds like your doing the things that need to be done. First do you or someone have a poa? That's a must have and whoever has it will ultimately be making a lot of hard decisions. It sounds like you have some family that is aware of the situation. You mention "but they think she will wind up in assistive living and I’m totally good with all of it." Sounds like a care team where she's at, if that's the case they have been down the road and will help assess your dm condition. Working with a team is best,does your dm have a dx or been tested?

There will be lots of others join in with lots of helpful advice, hang in there.

Stewart

harshedbuzz

AnonymousPJ-

Hi and welcome to the site. I am sorry for the reason you are here, but glad you found us.

Like dayn2nite2, I would expect this move to be a disaster. 

When your dad died, your mom not only lost a beloved spouse, but she also lost the person in her life that was providing scaffolding to help her function. That neighbors and APS have been involved suggests an independent living arrangement with less than a 24/7 personal attendant will be more of the same. 

There's an old saw here, that by a time family is willing to consider Assisted Living, that cruise has already sailed, and higher acuity Memory Care is needed. I can appreciate that it is difficult imagining your bright and formerly capable mom in a setting with others who are at various stages of dementia, but at the end of the day care needs to be appropriate to her needs and behaviors at their worst. 

I had an aunt with mid-stage dementia who was placed into an AL setting. Previously, she'd been living with her daughter who was totally burned out. The placement went terribly wrong. My aunt was not well oriented to time and often missed meals. The other residents shunned her because of her unfiltered behavior and inability to keep up with their conversations and group activities. Elders who don't have dementia really don't seem to want to interact with those who do and a few of the ladies could be quite nasty about her repeated stories and confusion with games. 

In your shoes, I looked for a MCF which would allow dad to age in place. The staff there were well trained and experienced around dementia behaviors and care. The activities were geared towards those who have had a cognitive shift which gave him a sense of accomplishment instead of confusion. Dad also came to dementia with a high IQ and considerable education, and it was hard to see him lose that, but we had to arrange care to meet him where he was in the moment.

HB

MN Chickadee

Unless you are having hired help come in 24/7 I would not bother with the move to IL. It is a huge risk I wouldn't take. However she acts on her worst days/moments and whatever struggles she has - expect that to be the norm in a new setting and an unfamiliar place. Is she safe in a kitchen? Will she be able to find her apartment when she goes out? Might she wander away and get lost? Will she remember to go to meals? Will she keep up with her cognitively normal peers at activities and their conversations? To answer your question, making friends in IL seems unlikely. Most older folks don't want to take that on, it's a big elephant in the room and to be avoided. They will likely be off doing mainstream things that she can't keep up with. My mother did make friends in MC though, even though it doesn't look like the normal process. 

Even Assisted Living is often not appropriate for someone in the middle stages of dementia, but it really depends on the AL. Each company and state has different terms and certification processes. Some are more acute AL with actual memory care, a higher staff to resident ratio, dementia training and dementia informed activities. Other ALs are literally just  an apartment with cleaning once a week and maybe a once a day safety check or a med pass and the staff will not be well trained in dementia care and it will be like one staff per 20 residents, they will not have the time to deal with dementia symptoms.  I would definitely be looking for staff trained in dementia and a higher staffing ratio or it will be a short stay for her. It is a really tough pill to swallow, but as long as you are going to go through this difficult transition and the stress it will bring her to move I would make certain you are getting her to the right level of care. We usually have to use therapeutic fibs to make a move happen. The doctor wants you to stay here a few days to get stronger, there's a problem at the house like no heat so stay here a while etc. 

jfkoc

Finding the right facility is as hard as finding the right caregiver. 

You say the "place" you found seems good.  My question is based on what?

What did you look for? How did you research etc? 

Looks good, food is good, does not smell is just a start. Training, staff turnover, inspection record, contract?????

zauberflote

Hi Anonymous, and welcome! You will find an enormous and bottomless well of first-hand experience here, as well as support and shoulders to cry on. 

My mom was widowed at 69, and moved to be nearer family. She found a lovely apartment and lived there happily and contentedly, attracting to herself a large circle of mostly younger friends with whom she finally got to have the social life she'd missed for a few decades. My dad was somewhat bah-humbug about socializing. Then she started slipping, probably before she earned her (second) degree at age 78. At my sister's strong urging, we moved her to an assisted living place which she had chosen from the two available locally. Mom was completely unable to manage her life by herself, sis had been doing all the household things for some time, and the ER visits for falls while out walking briskly.  Watching her say goodby to her peaceful, sunny 2-bed place was very very difficult; at the time I had to harden my heart not to burst out in tears.  

AL was a bit more assisted than some-- it was their habit to patrol the halls calling mealtimes, and for the two services required to "qualify" her for AL, we chose meds management and 2x weekly showering. Being Mom, she took nearly a year to acclimate, as some parts of her brain still worked at their usual high level. 

She refused to do the activities-- bingo and chair exercises-- and I don't blame her. She had her library, her music, two outings a week with church friends, and a bouncy younger lady across the hall who took Mom under her wing while Mom mothered said lady! It was a very dear friendship. Mom went on one sponsored bus-outing, and swore never again. It was all men, and they were behaving like a bunch of pre-adolescents and were both very clique-y and crude at her at the same time. Never again! 

After a hospitalization from hell, we moved her to my city, to a true age-in-place MC. The residents died there unless they required skilled nursing, but for most, hospice was chosen instead. The place was far from perfect, but the core staff were in love with their charges. Mom had no behaviours except some petulance in the last few months of her life. She died there, between half-hourly bed checks, in late February 2020-- clearly she knew somehow to sidestep Covid!

This is long, I know-- hopefully it helps even a little bit!

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Martin Robbins

Hello, Anonymous.  My siblings put our mother in independent living with dementia.  It was a huge mistake.  All sorts of incidents occurred which could have killed or crippled her, including falling down the last five steps of a staircase, head first.  It's good there was carpeting.

She was one year in IL and six months in AL  I rescued her from AL at the heighjt of the COVID pandemic and quarantine.  Seven of her former neighbors died within the next eight weeks.

I found a much better place than my own and moved her in with me.  I was her only caregiver for 19 months.  After 19 months, she was on home hospice for four months.

God bless you for caring.

Quilting brings calm

It sounds as if you have been told she needs assisted living, but that you want to try independent  living first.  I would recommend that you go straight to assisted living.  Here are my thoughts: 

The fewer moves, the better.  Each move will be stressful for her.  She will have a temporary set back each time.  She will find each move hard to settle in. Learning the staff and residents names, the routines, etc.  

Independent living is really just for  seniors who want condo living without doing housework, possibly laundry or cooking meals.  Activities ( if there are any) are geared toward those of sound mind and body.  If various authorities got involved in your moms life in the condo, she won’t fare much better in independent living.  Many independent living facilities are not staffed nights and weekends  

Assisted living is for people who need support. 24/7 staffing with a nurse on weekdays,   Meals, activities for frail people or people with mild dementia. They will come remind her for meals and activities. They do laundry, housekeeping, medication, help with showers, transport to local doctors.   They will check on her multiple times a day.  They will do things like get something from a cabinet, or figure out why the tv remote won’t work.   They probably have a call button or pendant. My parents have their  own two bedroom apartment at their assisted living facility. 

Anonymousjpl123

Oh my god thank you! Actually I clearly gave a misleading post about where she is going. She is going to a place with 3 levels of care: independent living, assisted living, and memory care. So they have all of it. She can start at independent living but there are lots and lots of people there with memory loss and they are more than equipped to deal with it as it advances! So this will be the last place she lives regardless of what level of support she needs.

Anonymousjpl123

I think what is painful is that I am worried the move itself will be traumatic. I feel like her memory gets worse every day and has since my dad died. It’s awful. But there are so many people in this place with memory issues. It’s why I fell in love with it. Sure, there are singles and couples doing well in independent living but many others have assisted living all the way to 24 hours on a secure unit. The staff are very aware of her situation and I do trust them to monitor her and of course thank god I’ll be close so I can also be checking on her. 

So her safety is less a concern than making friends and feeling happy. Not that safety ISNT a concern, but maybe I overstated what independent living in this place is. All meals are included, there is OT/PT, a doctor on site, nurses 24/7. Part of why I chose this place there is so she can get more care as needed. 

What seems harder is how to make new friends at this point. How can it happen? Will she be able to make friends with the others with memory issues?

Anonymousjpl123

Where she is going describes themselves as having “independent and supportive senior living, dementia and Alzheimer’s lifestyle and care options.” 

I don’t know why the font got so big lol. Anyway based on everyone’s experience does this seem like it has comprehensive care?

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Anonymousjpl123

This board is amazing. Thank you all and Victoria especially. I feel like I have been navigating in a dark forest with loved ones who have no idea what I’m going through, and all of you are like right here and asking questions that feel like a flashlight. Thank you.

Yes, this is very reassuring. What the staff at this place - all of them - have is warmth. They do have a cruise director and to be honest they kept talking about how much time they spend on matching people with similar interests, how this is something that is a critical part of their work. And only literally just now did it occur to me that she’ll be matched with people at similar levels in the journey. Only just now did I realize why they kept harping on that department. 

I thought they were talking about it as activities but now this makes more sense.

They literally are doing all of the right things (so far) - most importantly sitting and explaining to me the fee structure as she needs more care. That was very important to me to be sure she could afford to stay for the long haul. At the same time, like I said, looking through the papers now to find answers to your questions feels like I’m reading with a flashlight instead of in the dark. 

I’ve been so focused on getting all of this put in place the reality hasn’t hit yet. I do know one thing: she loves where she is going (we looked at 5 places) and I see now why that’s so important. She kept talking about how nice everyone was to her the 3 hours we were there, staff and residents. It seems this will matter a great deal.  I will be back with so many more questions. Thanks again - I feel better than I did.

harshedbuzz

Anon-

This sounds like a variation on an all-too-common marketing ploy-- the bait 'n' switch. There are many LTC facilities that lure families in with the promise of IL or AL because they aren't ready emotionally to accept that mom needs MC. Touring an age-in-place MCF ahead of placing a LO is hard. But they know mom will quickly demonstrate a need for the higher level of care at which time that family will have had a chance to get more used to the idea. 

I would place her where she needs to be. Even if a large facility has levels of care in one building, it's the MC unit where the dementia-informed activities and trained staff will be. Going from one part of the building and team will still be a move to her with adjustments to be made. The apartments are likely different with kitchenettes and exits to the outside and she'll have a different care team to bond with. I'd make a best guess based on her more challenging times.

I'm a bit puzzled by your focus on friends. Is this something lacking in her life now? If she has friends now, they could certainly visit her there.

IME, with dad and my 2 aunts, relationships in MCFs tend to be a bit like preschool. The social director will often pair up people who are on about the same level and they kind of do things together. My younger aunt was in MC a long time and did form a real attachment to a male resident over time. They sat together at meals and activities for years. He would sometimes advocate for her if she wanted a snack. They died within hours of each other. My dad was much more bonded with the staff. 

Where a PWD has been moved away from friends, often family will hire a professional caregiver to come a couple times a week to be a 1:1 companion. My younger aunt maintained her pleasant personality and social skills well into the disease. She started in MC, but staff often included her with the AL group for outings and activities the first couple years. They were flexible about such things.

HB

MN Chickadee

Sounds like a nice place, but keep in mind it will make no difference to her that IL is on the same campus as MC when she has to move. Easier for you but irrelevant to her because to her it will still be an enormous change in setting and people even though it's 100 feet away. Consider whether you are setting her up to have to move again very soon. There is simply no way an IL is going to handle middle to later stages of dementia. Is is locked? And plenty of time for her to find mischief on her own in her apartment. A PWD left to their devices for any amount of time can find serious trouble and IL is not going to have eyes on her a lot when she is in her unit. When my mother was stage 5 and living at home she would use ointment she found instead of toothpaste, break a glass and not realize she couldn't just pick up broken glass as though it was paper, not know what to do when the glass had her bleeding, take frozen foods out of the freezer and leave them on the counter to spoil, pour water from the dish pan into pans as though it was clean. The lack of judgement needs serious oversight. Have they told you what the alleged staffing ratio is for her the area she is in? If there is any chance they will be able to handle dementia symptoms in ILthey will have a decent staff to resident ratio. MC will have a very specific number for each shift. The fact that she is showing significant memory loss symptoms and APS/neighbors have been involved suggests she is well down the road of dementia, this is not early stage. Take a look at this link and see what stage you think she is at (many are in between so err on the later one she is partly in.) Stage 5 and later are unlikely to do well without the supports of a dementia specific and locked unit.  

https://tamcummings.com/stages-of-dementia/

It may seem like you are preserving independence, but 9 times out of 10 this will end with the person completely stressed in a new environment without the supports an actual MC provides. She will be using up all her remaining mental energy on surviving in IL, whereas at an appropriate level of care and structure allows a person to use that brain power on activities and visits with family and being as content as possible. I am a believer in setting the person up for success, and to place in a unit where they can adjust only once and stay for the long haul. We did move my mother once to a new MC late stage but by then she was far enough along she barely noticed it was a new place. The adjustment when  we originaly moved her from her home to MC (late stage 5) the adjustment was difficult and I wouldn't want to willingly put either of us through that multiple times.  Just my two cents from someone whose mother had Alzheimers for 15+ years and has been reading the stories here for 8 years. Good luck, feel free to come back often and ask questions or update us so others can learn from you too. 

Anonymousjpl123

Thank you all so much for your thoughtful responses! I think the key is that they have all of the services that have been mentioned (skilled nursing, Alzheimer’s specialists, etc) and that while my mothers behavior has been super alarming, the biggest challenge for her living alone WAS the lack of socialization. Going through covid in a new city (they moved in 2019), combined with losing her long term husband sent her down the cliff. 

Part of the unique thing about her is 3 months ago she went to a neurologist and was able to “pass” all of the tests because they were very rudimentary. She also is able to do many daily tasks unsupervised. Where I see the biggest change is conversation and her short term memory - and because she has always been so very focused on academics it’s super noticeable. That’s why the friends thing is so important to me. She is sometimes aware her mind is changing and that ha made her isolate. But she is also deeply in denial. 

This is why I think the stepped care feels right and may work for her.

I’m writing all of this because maybe it will help someone. Also the AA hotline is superb. I called twice - first after the incident that helped me push the care decision on her, and then tonight to literally walk through the services this place offers and where my mom is. They can do that and it is amazing. Anyone struggling I hope you will call.

Beauchene105

I have to agree with several others here that IL may not provide enough support for your mom. When my mom moved to AL several years ago, she was in a better mental place than many of the residents, but it didn't stop her from enjoying them, as well as the ones who were more on her level of functioning. As she has spiraled down into dementia, lots of the other residents have as well. My mom clearly couldn't have been successful in IL even when her mind was still pretty good because she needed physical support in other areas. As time has passed, now she needs sitters in addition to the staff. I'm just trying to keep you from having to move her twice. I don't see that anything will be gained "trying" IL first. It's all so hard and in the end, heed your gut feeling.