DW rejected by our first choice MCF. My cautionary tale.

Vitruvius

I haven't posted about my month long effort to secure placement for my DW because others were going through such difficulty with placement of their LO and my effort seemed to be moving uneventfully.  I didn't want to distract from their need for feedback. But now I need to tell my story, hopefully for the benefit of others.

  

A month ago a room opened up at my first choice MCF.  It is an MC that is part of a AL/MCF run by a big national for profit chain.  Rooms seem to come up infrequently here.

I had been reading here about spouses in crisis mode trying to arrange placement after event that made it clear their LO couldn't remain at home.  It has been increasingly exhausting taking care of DW 24/7/365 and I had also been having a few very difficult days with my DW who is solidly in Stage 6e.  I thought I should arrange placement before a crisis event happened with us so that I can take care of some of my own issues.

For weeks I filled out gobs of paperwork, reviewed the contract, secured furniture, labeled her clothes, bought some things she would need that we didn't already have.  The facility nurse came to our house and did an assessment.  Everything was supposedly fine and I planned to place her last Friday.  On the Monday prior I went to the MCF ad signed the contract.  I paid a substantial sum including initial rent etc. We are private pay for how ever long it is and so money shouldn't have been an issue for them.

Then late Monday I get a call from the AL/MCF director.  The corporate nurse at their national headquarters finally reviewed my wife's application and decided to reject her for placement.

The explanation I got was third hand but it revolved around DW's diagnosis of Semantic variant of Progressive Primary Aphasia (svPPA).  This is a subtype of FTD and some FTDs are know for "behavioral challenges", they did not seem familiar with svPPA which although is somewhat uncommon should not be a mystery to a firm that runs MCFs.  That combined with my big mistake (I'm with TBE here) I said too much about my DW's own challenges.  Why? I thought it would help them take the best care of her (and I suppose I wanted to explain why I couldn't care for her properly anymore).  BIG MISTAKE.  Although what I related did NOT involve any aggression, just confusion, they extrapolated from what I said that aggression might become a problem.

I got DW's neurologist to write a letter and speak with the local nurse to assure them that my DW has displayed no "behavioral challenges" and was a "delight" whenever she dealt with her, going so far as to say the MCF would be lucky to have her.  I further got the Director of the day program my DW attends to also tell them that DW has been a joy to have in their program.  These expressions of support were not enough to change the mind of a hardened risk adverse, profit seeking bureaucracy.

So I am back to caring for my DW at home.  Her neurologist has suggested for some time that I start DW on Quetaipine/Seroquel and I finally did in June.  I should have started her months earlier as it really helped mitigate her confusion and delusions.  So actually it's not as bad as it was in the months before June that had lead me to consider placement.

Nonetheless I am back to re-investigating my second and third choices and even a few places a bit farther away to make sure DW gets great care.  My second choice was a MC only facility.  My DW is only 71, and it had an older population that seemed more compromised and frail.  The first choice place had more PWD closer to DW's age and progression (I think this is also why rooms there don't open up as often).

I don't know exactly what I am going to do but I don't think I can keep up with DW's absolute need for attention every minute.  Last night I turned my back for only a minute only to find DW was feeding the dog from her dinner plate.  At 2am I had to change the bedding.  Then we get up at not later than 6am to start it all over again.

Learn from my experience and think carefully what you tell a prospective MCF.  Oh and Wish me luck.

M1

II do wish you luck. Same thing happened to me, though ironically my first choice was not part of a chain and the one where I placed her is. I hop they at least give you your money back.

Joydean

Absolutely wishing you all the best luck you need. After the treatment you got from your first choice, I would not want to put my love one with them, I would be afraid to leave someone there. Just my opinion. 

60 falcon

I suspect I was too forthcoming with information too. My wife was denied back in February and the reason they gave was that she's "too needy".  Things were looking good and they led me to believe placement was going to happen.  Like you, I gave them a lot of information thinking it would help them care for my wife.  Their reason of her "being too needy" didn't make sense to me and possibly was just a convenient excuse.

Since then, delusions, hallucinations, and agitation became a big problem. They still are.  So maybe it was good she wasn't accepted back then?  After finally getting a good doc, we've been experimenting with medications to get things more manageable with limited success.  Seroquel just wasn't effective enough.  She just started resperidone and trazodone will be added in a couple days. I'm hopeful but we'll see.

I hope to approach the same AL/MCF again if or when we get her issues better controlled.  My wife is only 63 and has been at or near the end of stage 6 for what seems like forever.

Wishng you good luck with placement.

Jeff86

Vitruvius —Thanks for sharing your experience and the cautionary lessons to be drawn.  I am sorry you appeared to get so close to the finish line with your first choice MCF, only to have it fall apart at the eleventh hour.  It seems like a particularly cruel twist on the dementia journey, given that placement is such an agonizing decision.    Good luck as you develop Plan B.

Jo C.

You found yourself at a facility where they "cherry pick" their residents.  I have run into this professionally and personally.  I am sorry that happened; it is very disappointing to encounter such a dynamic.  Some facilities that do this will cherry pick, but if an accepted patient resident begins to far advance in  their disability or if the evolving dementia brings even non-aggressive acting out behaviors, the family may be asked to move their resident from their care.  Had this happen with a LO whose advancing dementia though quiet, required increased care and we were asked to move her.  That actually turned out to be a blessing in disguise.

Big corporate chains, especially if their corporation is publicly traded, are the most difficult.  They must create profit for their investors and the most expensive part of providing MC and SNF care are the salaries, wages and benefits they must pay; so they try to keep staffing low (one such corporate chain facility I experienced for my dear MIL actually blatantly lied about their staffing which led to a dreadful outcome.)  Keeping staff low and being able to game the inspections, means preferring "lite care" patients so the lower staffing levels can manage.  Until they can't.

I have come to feel that not being accepted by such a facility is probably for the better since a LO's care may be compromised as low staffing levels may mean they miss quite a lot or may not be trained to meet challenges.  I have learned to look at the uber beautifully decorated facilites with dripping chandeliers and wine soiree afternoons with questions - that is really done to fog and appeal to the family members, not the patient. 

One has to be able to communicate some information about their LO; but at the same time, being cautious about over-information especially if it is something that only happens once in a great while, or happened in the past but has not happened since. That being said, one must be able to communicate the actual care needs at hand. Not to do so means that if the facility is unable to manage the care due to low staffing, etc., then one's LO will not be in a facility that can provide the acuity of care needed leading to multiple future problems and a disaster for the poor patient who is not getting physical, psychological and emotional needs met.

I so hope that your future placement outreach gleans a much better situation that will be able to provide the level of care your LO needs and that you feel positive about the quality of care as well as the actual caring of your LO.

J.

Quilting brings calm

I have heard that some facilities that have both an AL and MCF component seem less able to deal with people at your wife’s level.  6E is pretty far along.  I think the MCF’s combination places are geared towards accepting  those just edging out of the AL level, or those who are already residents are their AL level. I know you want your wife with her peer age and physical health level, but I think she would be better off where her actual daily care needs are met best. 

Beachfan

Vitruvius wrote:

  My second choice was a MC only facility.  My DW is only 71, and it had an older population that seemed more compromised and frail.  The first choice place had more PWD closer to DW's age and progression (I think this is also why rooms there don't open up as often).

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My DH is in a “Memory Care only” facility since November.  At 78, he is among the most compromised and frail of the residents in his cottage of 16.  He is clean, well cared for and content, as are all the residents, regardless of their progression.  Costs are all inclusive, excluding incontinence briefs and wipes; he takes no medication. Staff is highly trained, the cottages are secure, and all manner of behaviors are handled.  I chose this facility (38 miles away) over a Memory Care”wing” in an ALF within walking distance of my home for the very reasons you cite.  Two friends had LO’s either denied admission, or asked to relocate from the closer MC/AL due to “increased care needs”.  (Don’t the needs of all MC patients increase over time???)  I am sorry you have run into this roadblock; I recall the time and effort you put into researching facilities.  Perhaps a second look at your second choice would yield positive results.  Good luck going forward.  

 

harshedbuzz

Vitrivius-

I am sorry your wife wasn't offered residency at your first-choice facility. The exact same thing happened to us with my dad's placement. I had toured a dozen places and mom's favorite was the one nearest her home with the "Gone with the Wind" staircase and stately grandfather clock in the foyer. She believed dad would respond well to the upscale decor and she didn't see the bleak advanced dementia wing where people transitioned once they needed Medicaid.

My mom was devasted by this but eventually came to appreciate that it was better than being shown the door after paying the up-front fees.

Their reasoning was entirely based on his medical records and specific diagnosis (He had mixed dementia- ALZ and WKS) of an alcohol-related dementia that can be associated with "behaviors". Ironically, he was far nicer in late-stage dementia than I'd ever experienced in the 60 years I knew him and the MCF where he ended up (my first choice- not super fancy but little turn-over of their well-trained staff) they always commented on what a gentleman he was. He was also very well behaved during his assessment.

That said, when I toured them, their DON admitted they limited the number of individuals with a FTD dementia. This was not so much about behaviors and protecting other residents and staff, but that they tended to need more attention than the average resident and doing right by them and the other residents meant a limit of one per hall. 

In retrospect, being rejected by mom's choice was a gift. I hope you get to a place where you can feel this way as well.

HB

Vitruvius

I have to say I chose the first MCF because every time I visited they had all the residents out engaged in some activity. I watched as they moved the group from a separate lunch room to an activity room for a nice live music event. They had stand up exercise sessions rather than just chair exercises for those who could do them. 

I knew this was because most of the PWD were relatively mobile and not super compromised. They did have a few who needed hand feeding and were wheelchair bound. But this is where I thought DW could find friends and engage in activities. 

I guess I knew they were cherry-picking but I hoped DW would fit that criteria for them. I guess I was wrong. Hopefully her rejection will be for the best. 

jfkoc

Cherry picking is not all bad. It is certainly better than accepting someone then booting them out.

For profit v non-profit. Both want to make money. For profit has the benefit of oversight by investors...non-profit has no oversight. A point to consider. 

Finding a facility is not an easy task and it seems it is iffy despite ones homework.

JJAz

Vitruvius wrote:

I have to say I chose the first MCF because every time I visited they had all the residents out engaged in some activity. I watched as they moved the group from a separate lunch room to an activity room for a nice live music event. They had stand up exercise sessions rather than just chair exercises for those who could do them. 

I knew this was because most of the PWD were relatively mobile and not super compromised. They did have a few who needed hand feeding and were wheelchair bound. But this is where I thought DW could find friends and engage in activities. 

In my opinion, you got lucky.  Look at your description of their population - primarily early stage. . . what happens to their patients when their disease progresses?  Answer:  they are discharged to other facilities.  No facility that houses people with terminal diseases can have a majority of early stage patients unless they are getting rid of late stage patients.  You now have a chance to find a facility that has trained their staff to properly deal with all aspects of dementia, and she will be able to live in the facility that you choose for the rest of her life.  Good luck.

toolbeltexpert

Vitruvius boy I feel for you and your situation. My worse nightmare. But your a board certified caregiver. Which means you just do the best you can. Your situation is heartbreaking, it's so hard when the mcf put profits over quality care.praying for your help to come.

I just meet with my dw psychologist and they do blood work on Monday and her platelet  count is dropping which might mean stopping the depakote and starting Seroquel. I also meet with the sw he asked how far I am willing to travel 45min out I said. She isn't eligible for a nursing home because she did exit seek although that behavior has subsided. I limited my cost to 4k personal pay with a changeover to Medicaid. I have done my calls no beds opened up. I am on the road gonna gone see about the Medicaid with a local resource. I will not being doing any thing till I see my lawyer next Monday. 

Vitruvius

I realize everyone here is right. For one thing I selected the first place many months ago. At that time exercising was important. However the big thing I am coming to grips with is that DW is declining quite rapidly. Stand up exercises are out of the question for her now. Just in the last month or so I have had to help her put of bed in the morning, help out of chairs, and in and out of the car. It's hard to recognize just how compromised DW has actually become. 

I also realize that those early stage PWD are no longer her peer group. And yes they may very well have asked her to leave at some point. My new question is: how many residents die here verses those who move to a SNF or home. Probably won't get an honest answer but I'll ask.

So how does one go about finding the right place. I asked about staff turnover, staffing levels, training. I got acceptable answers but that clearly isn't enough. I searched and found several good threads here that I bookmarked. I asked family visitors I met, which were few I must say.

So my search goes on.