How do you investigate a potential independent/assisted living/ nursing home situation?

[Daria]

My mother, 77 with great cognitive health but declining physical health, has decided to put herself on the waiting list to buy an apartment in one of those communities that have continuity of care.  

She has visited a place that she likes, and wants me to come over and talk about it.  I'm happy to do that, but I don't know what questions to ask.  Does anyone have any experience?  The place seems nice on the website, but I don't really know how to investigate.

[prairiewindmomma]

I'll try to come back later, but here's a start: https://projects.propublica.org/nursing-homes/

[TheReader]

The one thing a friend just learned is that, if the person is going in as private pay but will at some point convert to medicaid/medicaire, it's best to start with a place that accepts both so that there's no gap while transitioning. Otherwise it can take 6 months to get meidcaid up and rolling, and the new place may not want to wait while it catches up. 

 

[Daria]

6 minutes ago, prairiewindmomma said:

I'll try to come back later, but here's a start: https://projects.propublica.org/nursing-homes/

 

Thanks!  That's helpful.  

I am not sure how to read the results.  Like, what's reasonable, and what isn't.  Do you have a sense of what's an acceptable amount to find when you look a place up on there?

[prairiewindmomma]

Ok, my cupcakes are out of the oven, and my dd's playmate has gone home.

Our questions:

1. billing: beyond cost (per diem? monthly? cash discount?)---medicare eligibility? guaranteed continuance of placement if funds are exhausted (or eviction)? all inclusive or separate charges for laundry/hair/etc.?

2. staffing ratios & licensing: you want no more than 5:1 in a dementia facility, and you want special dementia training

---skilled medical?

---woundcare?

--onsite rehab?

--regular exercise classes or PT/OT involvement?

---labs and doctor who rounds in house?

---thoughts on mood altering medication (especially with dementia)

---toenail cutting? (this is a paid medicare benefit)

---incontinence management

--background checks on all staff (including kitchen, laundry, etc.)?

--are all medications secured? (it's not unheard of for pain patches to be stolen, etc.)

3. Personal care options

--bathing

--laundry

--hairdresser

--meal delivery to room option in assisted apartment style living?

4. facilities

--personal bedrooms? bathrooms? 

--how frequently are sheets changed? (incontinence management--liners, bedpads for chairs, etc.)

--personal items allowed? 

--hospital style beds/walkers/wheelchairs provided?

5. activities schedules

--choices as to daily routines

--transportation services

6. behavior management: Uh, I'm just going to be blunt....delusions are not uncommon with dementia, se*ual activity (what is consent between two impaired persons and neither remember they have spouses on the outside?), depression management.....there are all kinds of crazy town going on that I'm aware of at a relative's facility....my relative included.

 

That's a start.  

[TravelingChris]

I started reading it and some things were more troubling to me than others.  Bedsore treatments or lack of,  Not calling code or getting the AED  when it was not a DNR case, not giving prescribed and proper medication, general unconcern about disease transmission were things I was most concerned with in respect to the homes in my area and thinking about me as a patient.  But there were other complaints about things like missing clothing (not at actual nursing home but a drug and alcohol rehab place) that wasn't found until 3 days later, giving patients pills at activities (because of lack of privacy- pr dignity or something), feeding a patient while standing-   were issues I was much less concerned about.

But all of these reports were done in Medicare/Medicaid paid places so not assisted living which is where even more of the real problems are found.  That is because there are in most places no laws really covering assisted living.  And while some assisted living contains quite a number of mostly cognitive fine people with other medical issues, others become dumping grounds for advanced alzheimer's patients who really should either be in nursing home or speicial alzheimer unit but not in assissted living.  Assisted living should normally be people who usually can mostly take care of themselves but need assistance like medication management, some assistance with dressing or movement but not bedridden people.  A nice one I visited had some people with minor memory problems, th issues like new blindness, severe arthritis, etc.  

[Daria]

2 minutes ago, prairiewindmomma said:

Ok, my cupcakes are out of the oven, and my dd's playmate has gone home.

Our questions:

1. billing: beyond cost (per diem? monthly? cash discount?)---medicare eligibility? guaranteed continuance of placement if funds are exhausted (or eviction)? all inclusive or separate charges for laundry/hair/etc.?

2. staffing ratios & licensing: you want no more than 5:1 in a dementia facility, and you want special dementia training

---skilled medical?

---woundcare?

--onsite rehab?

--regular exercise classes or PT/OT involvement?

---labs and doctor who rounds in house?

---thoughts on mood altering medication (especially with dementia)

---toenail cutting? (this is a paid medicare benefit)

---incontinence management

--background checks on all staff (including kitchen, laundry, etc.)?

--are all medications secured? (it's not unheard of for pain patches to be stolen, etc.)

3. Personal care options

--bathing

--laundry

--hairdresser

--meal delivery to room option in assisted apartment style living?

4. facilities

--personal bedrooms? bathrooms? 

--how frequently are sheets changed? (incontinence management--liners, bedpads for chairs, etc.)

--personal items allowed? 

--hospital style beds/walkers/wheelchairs provided?

5. activities schedules

--choices as to daily routines

--transportation services

6. behavior management: Uh, I'm just going to be blunt....delusions are not uncommon with dementia, se*ual activity (what is consent between two impaired persons and neither remember they have spouses on the outside?), depression management.....there are all kinds of crazy town going on that I'm aware of at a relative's facility....my relative included.

 

That's a start.  

 

Thanks!  

All of that is helpful.  I need help in figuring out what questions to ask about the assisted living and skilled nursing portions, because she may one day need them, even though right now she doesn't.  You've given me good questions to ask.  

I checked the Propublica site you gave me, they had 3 violations on their last review, as follows:

1) Resident "escaped" and was found in another part of the building, and the appropriate authorities weren't notified, but it was documented in her file.

2) Resident's paperwork indicated that they had a stage 2 pressure sore, but the notes from doctor who was seeing her regularly indicated that it was an "unstageable pressure sore".

3) Resident was being given Domperidone for nausea, that the family had obtained from Canada, because it isn't approved in the U.S..

Should those raise red flags?  I wasn't able to find any local facilities that didn't have any violations.  I used to work in childcare and had a pretty good sense there of what I could live with and what was a red flag, but here I don't.

I also spoke with a counselor at an agency that places people and she said that it was "one of the best", although maybe not for people with advanced memory issues.  At 77 she has zero signs of memory or cognitive issues, and both her mother and grandmother lived well into their 90's with no cognitive issues, but of course there's no way of knowing what the future holds.  

[Daria]

9 minutes ago, TravelingChris said:

I started reading it and some things were more troubling to me than others.  Bedsore treatments or lack of,  Not calling code or getting the AED  when it was not a DNR case, not giving prescribed and proper medication, general unconcern about disease transmission were things I was most concerned with in respect to the homes in my area and thinking about me as a patient.  But there were other complaints about things like missing clothing (not at actual nursing home but a drug and alcohol rehab place) that wasn't found until 3 days later, giving patients pills at activities (because of lack of privacy- pr dignity or something), feeding a patient while standing-   were issues I was much less concerned about.

But all of these reports were done in Medicare/Medicaid paid places so not assisted living which is where even more of the real problems are found.  That is because there are in most places no laws really covering assisted living.  And while some assisted living contains quite a number of mostly cognitive fine people with other medical issues, others become dumping grounds for advanced alzheimer's patients who really should either be in nursing home or speicial alzheimer unit but not in assissted living.  Assisted living should normally be people who usually can mostly take care of themselves but need assistance like medication management, some assistance with dressing or movement but not bedridden people.  A nice one I visited had some people with minor memory problems, th issues like new blindness, severe arthritis, etc.  

 

Thanks!  

Did you see my list of violations that I posted while you were posting this?  I'd love your thoughts.

The place has 3 levels:

"Independent living": Residents have their own apartments, but have access to the activities, meals in the dining room (can also be delivered), use of fitness facilities, transportation, housekeeping, etc . . .  Can purchase additional services like someone to come in and help with bathing.  

"Assisted living":  Residents have their own apartment in a separate section, and have help with ADL's, all meals are provided, etc . . . 

"Comprehensive Care": Nursing and memory care, residents have their own room, and stay in a section that is   I think this is the only section that was evaluated in the Propublica website.  This section has received ratings of 5/5 by both Medicaid and Medicare.

The independent living would have everything she needs now, and would address my current concerns, but of course she might access the other sections later. 

[prairiewindmomma]

IME, a lot of dementia patients try to abscond, especially in those early weeks.  We had to move a relative from a facility with a buzzer door to one that has a secure front door, but an open back yard (with lovely seating areas, walking tracts, and a small waterfall (but too shallow to drown in  because of how it drains). #1 and #3 wouldn't bother me personally. #2 might.  It'd be something to keep an eye on.  Pressure sores do happen---I'd ask if they have the inflatable mattresses, how wound care handles those, how bedridden/wheelchair bound patients are managed.  Some people have fragile skin, but some facilities don't manage these things well.

I think you are wise to investigate all levels of care at a facility.  Another relative of mine is very healthy at 81, but has had two falls that needed rehab care and had she not rebounded well, likely would've ended up in aggressive assisted living or in the nursing home. Everything can change so VERY quickly at that age.

Keep the word of mouth conversations up, and ask to eat a meal at the facility, if possible.  Food has been a make or break issue for a facility we had a loved one placed at (it forced a change).  Are they preparing meals from scratch or is it frozen chicken tenders and canned peas, iykwim?

[Ottakee]

I would show up unannounced at meal times, etc and see how things are handled.

[Daria]

12 minutes ago, Ottakee said:

I would show up unannounced at meal times, etc and see how things are handled.

 

Do you think they'd allow that?  

My mom has gone there to eat in the dining room several times with friends who live in the independent living section, and I bet if I asked her friends I could do that too, but could I really just show up at mealtime and say "Hey, I don't have a loved one here, but I want to go observe dinner time in the nursing unit?"  I can't imagine that I wouldn't be turned away due to privacy concerns.  

She was previously considering another place by the same company, and I did go to them and say that my mother was considering the place and could I just wander around, and they let me, but I didn't try and get into the skilled nursing unit or the assisted living unit.

[TravelingChris]

I have a lot of older friends who are also friends or family of even older friends.  That is how I get a lot of my scuttlebutt about facilities.  

[Daria]

2 hours ago, TravelingChris said:

I have a lot of older friends who are also friends or family of even older friends.  That is how I get a lot of my scuttlebutt about facilities.  

LOL, that's a good strategy.

The nursing home section is pretty small, so I don't happen to know anyone who is there.  I don't think my mother does either.

[TravelingChris]

15 minutes ago, Daria said:

LOL, that's a good strategy.

The nursing home section is pretty small, so I don't happen to know anyone who is there.  I don't think my mother does either.

Yes that can be difficult.  I am going to be hunting up a woman I not only see at church but usually at so many concerts and theater I go to who went in to one place after hip replacement just for therapy and because she is alone.  (Which is definitely what I would have to do if my husband died before me).  It was only for a set number of weeks and since it seems like one of the best choices for me if I need it, I want to get a first hand opinion.

[Catwoman]

4 hours ago, Daria said:

 

Do you think they'd allow that?  

My mom has gone there to eat in the dining room several times with friends who live in the independent living section, and I bet if I asked her friends I could do that too, but could I really just show up at mealtime and say "Hey, I don't have a loved one here, but I want to go observe dinner time in the nursing unit?"  I can't imagine that I wouldn't be turned away due to privacy concerns.  

She was previously considering another place by the same company, and I did go to them and say that my mother was considering the place and could I just wander around, and they let me, but I didn't try and get into the skilled nursing unit or the assisted living unit.

 

If her friends already live there and they like it, I think that is not only an excellent recommendation, but will also help ensure that your mom won’t be lonely if she moves there. 

There may be a better place, but if your mom doesn’t know anyone there, won’t she regret not having moved where her friends live?

[Daria]

17 hours ago, Catwoman said:

 

If her friends already live there and they like it, I think that is not only an excellent recommendation, but will also help ensure that your mom won’t be lonely if she moves there. 

There may be a better place, but if your mom doesn’t know anyone there, won’t she regret not having moved where her friends live?

 

My mom is super social.  She has friends everywhere and if she doesn’t she makes them.  She has friends in many of these communities.  So, her friends are playing a role in the decision, but they aren’t the only factor. 

I feel like it’s easy to figure out if this place meets her needs now.  It has book clubs and bridge groups and personal trainers and a transportation service that would take her to church and shopping and weekly housekeeping and tasty meals and apartments with balconies and an indoor pool with aqua aerobics class. . . Those things are all she needs now.

But part of the deal with these places is that you pay a fortune upfront so that down the road if/when she needs more it’s guaranteed that she can get it in a high quality and familiar setting.  So, I want to make sure that those kinds of services are good too, even though she might well follow the pattern of my grandmother and godmother, both of whom lived independently until 95 or so.

So far, other than a handful of things on the pro publica site and a few online reviews that say it is too expensive, I haven’t found anything negative.  I called A Place for Mom which helps find nursing homes and the person basically said “Oh yes, that’s one of the best.” And they have the top rating from both Medicaid and Medicare.  

In the end, it’s her choice of course, but I want to advise her well.

[Daria]

14 hours ago, Patty Joanna said:

Annnnd.

 

sime of the decision points will be irrelevant to you and some of the decisions will not be in your hands.  Some of this boils down to doing the best you can at any point in the process.  You must recognize that you are not a soothsayer who can see all that is coming.  

 

I have a friend who has moved her mom 10 times in 15-20 years as things change—new business owners, different mom needs, changed finances....  

and yes, my friend is exhausted ed   She has almost certainly shortened her life span and quality of life to ensure these for her mother   I’m not sure how I feel about that at this point    But it’s the truth   

 

 

 

That’s what I’d like to avoid.  I hope that whatever she picks is the last place, because she can stay there for the rest of her life.  

[ElizabethB]

I would ask if they have any part time volunteer needs and help out for a bit.  You don't really know until you've been in and out a few times and really talked to the residents.  Many of the residents like company or have small needs that they may be happy to have a volunteer for, and you'll learn more about the atmosphere.

I used to visit when my daughter was around 1, the ladies really enjoyed her.  We got rid of a lot of excess stuffed animals that way, too, they were prized as "gifts" from my daughter and gave her something to play with when we visited.  

My MIL visits a place near her house and brings a batch of cookies with her when she comes.

[Daria]

1 hour ago, Patty Joanna said:

 

That’s the ideal and I hope it works out that way. 

I just want you to be ok with it if it isn’t and doesn’t.  

You can do all the right things and make really good decisions on the basis of good data...and have to make changes.  That just happens sometimes, but it isn’t necessarily something you could have prevented.  You just do the best you can. 

I did a couple of things that cued me into the right places—I showed up unannounced at 8:00 pm and noticed how quiet or not a place was.  Whether the place seemed adequately staffed.  How it smelled.  Was it tidy?  

One place I went to I walked the halls for ten minutes and couldn’t find a staff person.  Not one   And a demented guy started following me around ... it was spooky.  

Another place I went to just smelled bad, and the dining room was still cluttered at 8:30   

One place I went to at 6:00 and saw the director of the facility wheeling a resident to the dining room—they were laughing and joking.  This was the final convincer I needed post-formal interview that this was the place for my dad’s last days, and it was really very good.  

We had two days to find a place so the pressure was on, and I used every clue I could get.  

I like the idea of going by in the evening.  I'll have to try that.

I think the challenge is that this is the kind of place that you pay hundreds of thousands of dollars to buy into.  So, if it turns out that it isn't a good place, she might not be in a position to get into something equivalent.  

I went over to mom's today and went over what I found in my research, she seemed to think I was being a helicopter daughter, particularly when I mentioned the Propublica site.  We also took the floor plan and marked out how big each of the rooms in the new smaller apartment would be relative to her current rooms, so she could think about things like which of her carpets would fit, and was there enough room for 2 bridge tables in the dining area for when her friends come over.  She kept telling me she wasn't "that old" when I asked questions about the long term like "Is the shower a roll in one, so she can keep using it if she's in a wheelchair?, or "Do they offer help with laundry if it gets to the point where that's too difficult?"  It actually made me realize that she isn't comfortable asking questions about the assisted living/nursing care portion, which makes me glad I'm investigating.  I have a contact, and plan on taking a tour in early August when I have some time off work.

 

[Daria]

1 hour ago, Danae said:

Ask about transitions between levels of care. Is she guaranteed a spot in the next level when she needs it? What if she has an illness or injury that temporarily requires a higher level of care -- can she have home health aids while in her independent living apartment, or will that require transitioning to assisted living and if so can she move back when she no longer needs the extra care? Is there a buy-out option if in the future she need a type of care they don't provide? 

Those are really good questions.  They definitely have home health aids, there's info on the website about that.  She seemed to think that if she needs rehab again (she's had a hip replacement, a foot injury, and a broken pelvis in the past few years, leading to 3 stays in rehab), that she could do it right there. 

There are different options for buying in.  The one she's thinking about would give her a 90% refund when she leaves or dies.  I'll ask more about it when I visit.  

[Daria]

40 minutes ago, Patty Joanna said:

Is diabetes an issue?  If so I have one more consideration.  

 

Not at this point, but I'm curious.

[CAJinBE]

My mom is in Sky Luxury Living. It does not have the type of continuing care you are looking, but I just wanted to say that they allow people to try it out for a few days to see if they like it before committing. They also have an apartment that is available for visiting family to rent. We were allowed to visit her any time we wanted to, eat in the dining room, and even attend the happy hour every day at 4pm. I could see how nice the staff were to her and how good the food was during our visit. I could also see how happy the other residents were. Maybe the place she is looking at has similar policies. I also got to see how they respond to emergencies. All the residents wear an alert badge and an automatic alert is made to the desk if they are not out of bed and moving around by a certain time in the morning. I was impressed and wish she could stay there forever. 

[Little Nyssa]

1. Visit a range of places in your area.

2. Visit on a Sunday night- that is when you’ll see the times when the supervisory staff may be absent and the rest of the staff may be taking it easy- so you will see the place at its worst. That will give you an indication of how bad it may get. If it’s okay then, likely it will be okay otherwise.

3. Are you sure that mom has good cognitive health? In our experience, MIL was accepted to live in a lovely assisted living place: think big windows, palm trees, waterfalls, but the DAY before she was to move in, they evaluated her and found her to have dementia and needed to be in the locked part of the facility- which was like a hospital, dark, and dirty, way in the back. It would be good to be sure of what she needs beforehand so as not to be blindsided. (SIL did not let her move in there- we found another place.) 

4. Find a place that has a nice memory-care wing attached, so if she needs it later, it will be there and not too much of an upheaval for her to move to it.

5. Ask the local Alzheimer’s association for several recommendations. Even if she is cognitively well, those folks know the neighborhood.

6. It’s best to move into a facility which is brand-new, because then it will be state of the art and the staff will be on their ‘A-game’ trying to recruit more residents, so it will be in much better condition than it will be in 10 years.

good luck!