What to ask on tour of care facility

Fairyland

I've finally started to make some decisions about what to do with my mom.  I have given up my own home life to move in with her for 11 months (luckily could still keep working). I now feel that she would be better off in a community with plenty of  activities and new friends, and is able to function enough without me watching her every move, as long as it is set up so she doesn’t need to drive or organise anything.   

Also I’ve realised I just can’t do it all 24/7 (especially the entertainment side) and “old mom” would never have asked me to, back when she could think a situation through, and remember what she had decided the next day!  I keep thinking how I will ensure I never ever do this to my own kids, and she never asked me to do this either, so why am I ruining my own life?

 I’ve sent an email to one place to make a start, there are a few in the area. I’m not taking her with me until I have visited a few on my own - I will present the best one I find and sell it to her.

 So, wise ones, what should I ask and check?

Lindsay22

Would she be going to AL now? Or directly to MC? I would only look at facilities that have increasing levels of care Al to MC to SNF. Ask about staff ratios.  Medication management (can a PA or doc adjust meds in house without a visit to the PCP). In house nursing and doctors (what is available without having to take her out to appointments, as this will become MUCH more difficult later on). What are their policies on sending folks to the hospital? (mom's last place would constantly send people to the hospital for small issues which was terrible for her). What is the hospice/end of life care procedure? Can she receive hospice services there or would she have to be moved? What happens if she runs out of money? Some places will allow you to stay with just your social security if you prove you can pay for 5 years, for example. 

RobinNicole

Hi Fairyland,

I, too am starting this part of the journey and it can be daunting.  I can speak to my process, but others have gone through this before us and can add much more.  I found a service (free) that helps you determine suitable places and even arranges tours.  I have gone on three tours so far and I took pictures and had my questions with me.  I created the list of questions through this forum as well as sites that provide questions (like a place for mon).  I organized my questions into big areas like staffing and care questions, training, safety, facilites, services they offer, types of rooms, care plans and cost factors.  It’s a lot to consider and I am in CT and it can be overwhelming on the many options.  I am doing a first pass to get an impression and then will ask my sister in laws to join me (both are nurses, one having worked previously in AL and one who currently works in SNF).  Right now we are being very measured in our approach, but I feel better knowing I have visited some places to start should we have to speed things up.  I know there are various threads on this forum with recommended questions and strategies which should be very useful to you.  Wishing you the best as you start this research

I echo Lindsay22- I only am looking at facilities with progressive levels of care, and regrading medicine management etc interestingly initially I am finding some places have that included in fee while others add those on as services - or points.  I found the points / services challenging to dig into what you are paying for.  For my mom currently she does not need all the additional but I know later on will.  You have to be prudent so you can save the money you will need later.  And some places allow hospice while I toured one with a campus that has a SNF attached.  Many choices, many price ranges and then differences in accommodations, activities, staffing gaps etc.  thank goodness for this group which provides so many folks perspectives and experiences to keep in mind

LicketyGlitz

Hey Fairyland, I wrote an entire post about our experience when we were researching, and it includes a couple of sites with question lists that I found really helpful. It may help you out too!

https://www.stumpedtowndementia.com/post/how-to-chose-a-memory-care-facility

Fairyland

Thanks everyone who responded, very helpful! Wishme luck today on my very first scoping visit for a family member, please!

  I have contacted several myself and have 4 appointments in the next few days. I treat this as initial introductions and will expect to call them with more questions when I have made a shortlist.

As for ttodays, it’s the only non-profit on my list, so not as much on the radar of the agencies. I don't like signing up with those, the phone started ringing before I had even finished filling in the online form, I was bombarded with emails, and I noticed that lots in the area aren’t on their list -meaning they don’t pay the finders fee I guess!  this is my childhood hometown so I do know it.

I don’t want people phoning me from agencies because she can overhear it all and I’m going behind her back at this stage. I’m not great at the subterfuge and easily flustered! Robo assault by phone is a sore point as it has kicked off revealing the extent of moms memory and apathy problems, and cost a ton of money.

I don’t think she would agree to memory care yet even if she is even bad enough, usually she presents as unimpaired.  She looked at one place once with her overbearing SIL just before the pandemic and was very put off the whole idea -I think that place is a very good option on paper so  this has to be handled with caution! Reminds me of visiting schools with my kids and they chose based 100% on how good the cookies were!

My mom is very very quiet, private, has no problem hearing, and easily bullied into doing what others want including giving away her money.  She would never put up with sharing a bedroom, lucky for her she can afford to say no to that.

M1

Fairyland, I haven't done this yet, but you might want to read other threads about how to handle/present to your mom.  "Taking her with you" for tours may backfire quickly, particularly if she has anosognosia (thinks nothing is wrong).  There are multiple threads about this, many do not say anything to their lo's ahead of time, and/or use fiblets at the time:  the house needs repairs, the doctor wants you to go here for rehab until you are stronger, etc.  Just don't want you to be ambushed by a preventable confrontation, I wouldn't count on her buying in to the move.  Some are presently surprised (see BillS's recent experiences) but many are not.  Just remember, you are the one who needs to make the decision, not her, and her care needs should be the deciding factor (not her preferences, unfortunately).

Good luck with your search, for sure.

EJ97

If you are looking at assisted living, be sure to check out their memory care. I moved my mom into the assisted living part of a place which was really good and when she had to go to the memory care wing it was terrible. Awful staff and it felt like a prison. Got her out after a few months. Ask sales person if you can meet with the activities person to get a real idea of what the activities are. See if you can stay for lunch? How is the food and service? Try to visit the places again after your tour. Get a sense of the staff and meal time routine.  How do residents look?  Are they happy?  Don't be swayed by fancy furnishings.

Fairyland

Hi again, have been having intermittent internet, so haven't been able to reply with my VERY SINCERE THANKS for you all and this community!

but meanwhile I visited the first one and now have 4 others lined up for the week ahead, which covers all the possibilities for multi-level care here, pretty much.  I have tried to take in as much as I can, from all your comments thanks especially Lickety for the lists and overview.

Mom is not going to know at all what I am doing, M1, the fiblets are being deployed left right and center. Last night on a meal out with her, I did say I may need to return to my own home for a while to help my DH (we were remodelling it so she can live with us, but it's not going well due to pandemic disruption), and I would have to get some outside help for her while I did that, which made her look worried and confused for a second, then she was instantly distracted by the meal.  That confirms yet again to me that it's not worth involving her in these discussions and I will probably present a respite stay, if we can get one in a place that might turn out to be her future home, as a fait accompli.  

The first one, AL is not suitable at all - I didn't bother looking at memory care, thanks for the heads up, EJ97,  but I will for the rest. This place's criteria for memory care is not being able to manage own medication, which mom has occasionally not been able to do when at her worst- I fill the boxes. I know that is the level of needs I should be aiming for-mom at her worst.  No doctor comes in, and they said relatives would take them to the doctor if needed. If only we had people nearby able to do things like that...! The activities consisted of religious services of one religion (not ours) and bingo, which she hates.   They USED to go on trips out- preCovid, which turned out to be shopping, to Walmart.  There are lots of things to do in the area and I often see buses from other facilities at  concerts, the zoo, etc.

The other people there looked very silent and bored, sitting around after lunch, and didn't return my greetings (really odd for Iowa), and one glared at me fiercely and demanded who I was through my entire visit- I assume that lady belongs in, but isn't in memory care, because she is nearly immobile so can't escape!

There is no internet, so she can't have something like an Alexa show. Remember that I live abroad.

This all costs nearly $5000 a month, twice moms income - without her investments and selling her house (good old dad, he always took good care of her and still is looking down on her, from wherever he is now). There were many empty units, which surprised me because there is supposedly such a shortage.  But that is a lot of money and this is not a wealthy area. 

BuffaloGal

The first time we placed our mom it was in an AL that claimed they could take care of her needs as her Alzheimer's progressed. They lied. We were given 2 weeks to find someplace new for her. This time we knew what to ask about and what we were willing or not willing to deal with when we went looking for a new place.  One of our most important requirements was that the place had internet. We put a Ring Camera in her room.  Not so much to spy, but to keep an eye out and watch her care givers.  Unfortunately we had a incident at her current MC where an Aide was really rough with her. She no longer walks, and her aphasia has made communication difficult. After showing the Director the video, the Aide was fired.  Everyone else there is terrific.

Another thing to consider in access to the facility. The AL was locked and a employee had to let us in and out every time we visited. It was a pain because sometimes it took 20 mins for someone to come to the door to let us in/or out. The MC gave us pin codes for the door to her building. Much easier and the Aides aren't taken away from the residents to let a family member in the building. 

Another thing to look at, or actually, smell.  If the place smells bad, like urine, it may mean the residents aren't being properly cared for. One place we looked at was at the top of the $ but when we went to visit, the smells were almost overwhelming and the residents were mostly ignored. Didn't look like enough staff for the amount of people we saw there.

Lastly, how many times has the facility changed names. In the 3 yrs since we move our Mom out of the AL it has changed names 2x's. When you visit a facility ask how long has the the Director been there and what is their staff turnover.

Fairyland

Thanks Buffalo Gal, great food for thought!  This is the sort of thing anyone would want to avoid but it’s hard to dig down - the marketing person is always going to say Yes we can! To every question, well that’s the feeling I had from 3/5 facilities I have toured this week. I think because I live abroad, I am going to have to make the internet, Alexa show and camera surveillance a top of the list non-negotiable - only one of the 5 said yes to that with no hesitation or confusion (we aren’t really trendsetters in my old hometown). Now to find out if yes means yes, and the others are really just the marketing person doesn’t really know about it.

I’m also torn about instead bringing her instead to where I live, they have similar facilities but it  is probably a lot more expensive and the healthcare system is not really as good especially after covid. She has cancer (stable one year after treatment) and had a stroke in November. 

She still has very good quality of life so we would still opt to keep her as healthy as we can. Seems to be mild VD and on a long plateau.

harshedbuzz

Fairyland-

Some random thoughts-

1. If your mom is not a wealthy woman and doesn't have a robust LTC policy, I would only be touring facilities that would be able to convert her to a Medicaid bed should she outlive her money. The assumption at many places is that families pay out-of-pocket for 2-3 years first as a business model. If you start out at a fancy place that doesn't take Medicaid and then need to transfer when the money runs out, your options will be limited greatly.

2. If your mom is at a point where she has lost the initiative to entertain herself, she will not be successful in a traditional hospitality-model ALF. Most ALs expect their residents to be oriented to time and turn up for meals and scheduled activities without prompting of escorting. 

Typically, these are for folks who haven't had a cognitive shift but need help with day-to-day activities. Often the elders living in them can get quite salty when someone tries to move a PWD into their community and your mom may find herself ostracized or even bullied. My aunt was bullied by a bunch of senior mean-girls when she was in AL when they realized she couldn't keep up with conversations at meals or engage appropriately in activities that weren't designed for PWD. 

There's an old saying the "by the time a family is willing to consider AL, that cruise has already sailed and the PWD needs a MCF". 

It's a good idea to look for a place that offers a continuing level of care for a lot of reasons. Another aunt of mine entered MC in stage 5. She was a delightful personality and less impacted than most on the MC side, so they often brought her over to Al for lunch outings and simpler activities. Later, when she progressed and needed SN, they had her spend most of the day in the MCF as it was a more social place. 

It's also nice when a person is able to use the SNF/rehab at their facility after a hospitalization as it will be less stressful on them generally. 

Buffalo Gal's warning about name and ownership changes is a good one, but somewhat clouded in COVID-times. Where I am, many very nice facilities (including the one that I trusted my dad to) have rebranded themselves to distance themselves from the death statistics which are listed by facility name. The place that was my mom's first choice for dad (they didn't accept him) not only changed the name of their CCRC, but broke the different units down into different reporting entities so those who died from COVID after a transfer from the hospital were not included with those independent seniors living in the fancy apartments on campus. 

HB

Fairyland

Thank you so much for that, HB. I always avidly read your posts, I have been lurking on here for a year now.

My mom is fortunate that she has got plenty of resources, and I am also aware that she MAY outlive them, so I will cover all the bases somehow, no one knows what might happen and she might beat the odds of diagnosis of cholangiocarcinoma cancer and stroke at 83- she has definitely got 9 lives having survived WW2 in England and very early open heart surgery as a child, after her dad abandoned her when told she would certainly die aged 9 months. Then first TIA at 38!  

Despite all that she has had a nice life, including both parents predeceasing her fairly suddenly in the 1970s and 80s, with no burden whatsoever on her, apart from the normal grief.  Life is so different now isn’t it? Are medical advances really doing us a lot of favours at the soggy end of life (I am saying this as someone working in advanced genomic diagnostics, I feel this is a very very valid question!) 

I am so tempted just to grab the first assisted living place that appeals to me, but being honest with myself that is not the right thing to do. This space is soo helpful to be able to ask things. I am a scientist and I analyse data, sitting quietly at a computer, so that is what I am going to do first on these overwhelming fold RS on each facility. I’m an Aspergers girl though, with chronic depression, not so great at dealing critically at seeing through charming  sales spiels! Probably why I don’t have that much money myself haha. Also why I can’t entertain, motivate and cosset my mom like she needs, it’s just not the way I am built.

I am feeling blessed with my hometown and having had the chance to live here again for many months- “Iowa nice” is real. The healthcare is super. The lawyer my parents had for years, once I found him, was legit and on the ball so all the trust documents and POAs were rapidly put in place (mum had forgotten his firm’s name but I found it once I cleared the mountain of junk mail and dealt with all the scams etc). The city is big enough to have several choices and none of the many facilities I’ve been in, at least since the horror visits to my great-gran in the 1960s, have ever smelled of urine nor had any big issues  (dad was in several too in 2015-16). The local area have done reasonably with CoVID (probably more by luck than judgement, but still it works- neither of us have caught it and both are triple vaccinated).

May flowers

In hindsight, just coming off a bad experience, if you can find out how long the current caregivers have been there to see what kind of longevitiy there is. We put my FIL in a MC that was amazing, shiny and new, but it was only as good as the caregivers. The administration changed, they lost a great nurse and many good caregivers and the care was like night and day.

We have been in contact with several families who started the same time as us, and they noticed the same thing. We had an echo set up in his room and this was not an issue, but with the change of staff, we found the echo turned off. Another family saw their LO laying on the floor crying out for help for an hour before help came (on the echo), and even after they called the facility. From then on, their echo was being turned off as well.

That is not to say MC is not a great choice, it was for my FIL with the right caregivers. When they had a staff turnover we wish we had reevaluated right then.

Fairyland

Wow May flowers, how terrible!  I’m so sorry-that is really a telling sign about the echo being turned off!  Makes me think that these devices are a way forward with all types of care, it does seem to help, though not a cure-all. I’m looking into them more now, thinking to get it  set upat home and get her used using it with me.

Staff do make all the difference, to most endeavours I think.  I can’t help thinking I need more  information but it is hard to get it, even if I could rely on it being, and staying, true over time. My mom is still at a point where she can tattle but doesn’t yet make things up or confabulate, which is a little reassuring.

A respite stay might be the way to go, in hopes she is drawn in and even the holy grail, she likes or at least tolerates it.

May flowers

I wish it had worked out, he really liked it and made friends. We thought he would hate it, but he was so busy he didn’t have time! I think the echo is very useful and good caregivers will not mind it being in the room.

The main thing I would have done differently though is look for an established memory care with low caregiver turnaround, and talked to families of residents to get their input

SylviaLockett

Good evening!  My first post!  It's time to begin touring memory care facilities.  My husband will probably go into care later this year.  Our goal is to use Medicaid.  When touring a facility for the first time, do you tell them you want to use Medicaid?

I've gained a lot of information from this thread.

harshedbuzz

SylviaLockett wrote:

Good evening!  My first post!  It's time to begin touring memory care facilities.  My husband will probably go into care later this year.  Our goal is to use Medicaid.  When touring a facility for the first time, do you tell them you want to use Medicaid?

I've gained a lot of information from this thread.

Hi Sylvia and welcome-

Your post will get more attention if you start your own thread.

To your question. Have you sat down with a CELA to do the necessary Medicaid planning for your state? I ask because some states do not cover the costs of MC- only of a SNF and then only if the PWD meets the criteria for admission to that level of care. 

You absolutely should share with the sales agent that you intend to use Medicaid as payment. Many of the higher end places do not accept Medicaid at all and you don't want to waste your time or theirs- this can be accomplished via a phone call. 

Even when a facility does accept Medicaid, there is often an expectation that the resident will be self-pay for 2-3 years before converting to a so-called "Medicaid Bed". Their business model is structured so that the higher self-pay time and lower reimbursement of Medicaid balance out across stay. Such places do accept Medicaid, but the beds typically go to residents who are already in their facility.

If you will be going straight to Medicaid, you may have to broaden your search and may face a longer wait especially for a "male bed" to open up. Medicaid pays for semi-private rooms and most facilities skew heavily female so fewer male rooms exist. If your DH (or yourself) is a veteran, a state-run veterans' home would be another avenue to explore.

HB