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new to this forum - long rant! - advice appreciated

Posted by bevangel (My Page) on
Wed, Jul 29, 09 at 20:51

I'll try to keep this reasonably short but I gotta get it off my chest.

92 y.o. MIL, an extremely bright woman (IQ probably close to 150) now has maybe stage 5 dementia. Her medium-term memory is pretty bad but her long-term memory is still good. And she is capable of very rational thought based on the memories she has. Thus, when visiting the doctor, she can do the counting backwards from 100 by 7s thing as well as I can, but five minutes later she will have forgotten that she just did the counting and the next day will have forgotten she even saw the doctor the previous day. Then, several weeks later she might suddenly recall the entire doctor visit with amazing clarity.

MIL is very aware of her failing memory, is fighting the loss with all her might, and believes that "if you don't use it, you lose it" applies equally to the mind as well as the body. So, she wants/demands pretty constant mental stimulation and gets angry/agitated if she feels she has "nothing to do but stare at the walls" or "fall asleep in the chair".

Unfortunately, MIL no longer has enough short-term memory to enjoy reading books or watching most television shows or complex movies. She does still enjoy reading short stories and magazines, doing crossword puzzles, jigsaw puzzles, and playing card games and Forty-two dominoes. And, she LOVES talking although she is beginning to find it difficult to initiate conversation topics.

Physically MIL is frail and must use a walker to get around. She moves very very slowly but she can be quite determined so she'll walk a fair distance to get something she wants. She still takes care of herself physically and dresses appropriately. She experiences occasional "incontinence" problems but only because she sometimes simply can't move fast enough to make it all the way to the bathroom before the urge becomes overwhelming. When an accident happens, she will clean herself up, shower, put on fresh clothing, and either wash the soiled clothing or put it in a plastic bag to throw out. She even clean up the bathroom.

MIL makes her own bed every morning, can keep her apartment picked up, does her own laundry (though she sometime forgets she has washed something and washes it a second tie.) She does not want anyone helping her shower - tho she likes having someone sit in the next room and talk to her while she showers b/c she knows she might fall. She forgets what day of the week it is, but with a digital clock showing month/day/time can follow a calendar to figure out what time something is happening and can plan for it and get herself ready. She can read a map and follow directions including going so far as to program her TV to record her favorite shows... though she may not be able to remember whether she ever then watched a particular show.

MIL does need medication management because, without it, she is likely to take several doses of medicine in succession. She won't use a pill minder because she resists the idea that she could possibly forget and take her medicine two or there times in a row. When we found she was running out of meds within a week of having them refilled, we insisted on med management services. She didn't like it at first but she has come to accept it and no longer fights the idea.

MIL had been living in a wonderful independent living facility 400 miles away from us that I would happily recommend to anyone. [In case anyone is looking, The Continental at Park Place in Amarillo, Texas] But, after she got verbally loud around other residents a number of times, they recommended that she be moved to their assisted living facility. Note, MIL didn't actually make any threats against anybody. But, if an activity that she enjoyed doing got canceled and she felt she had been ignored too long, she would stomp her walker up and down while loudly declaring how she "hated this f***ing place" and that she wished God would just let her die! Apparently she did this on the elevator one time and scared a couple of other little old ladies. Later on, of course she would have no memory of throwing the tantrum. The Continental was fabulous and worked with us as long as they could but eventually we agreed that it was no longer an appropriate setting for her.

We probably SHOULD have just moved MIL to their associated assisted living facility but, since she was also complaining that she never got to see enough of us, we thought this would be an opportunity to move her closer to us.

So, we moved her into the Meridian in Temple, Texas which is a for-profit independent living facility. They assured us that although they were an IL facility, their "Platinum Plus" plan offered "all the services of an assisted living facility" for an additional cost above the basic services. Thus, instead of having to move to a new facility as care needs increased, a resident could stay right at the Meridian in their original apartment.

Further, the Meridian claimed, an alzheimer's patient was better off in their IL facility where they could enjoy stimulating conversations with other residents who did not suffer from alzheimers. They also assured us that they were quite used to clients who occasionally threw temper tantrums and that this would not be a problem because they knew how to redirect the residents and settle them down. The only thing they expressed any concern about was whether MIL was likely to actually strike someone else or "wander off" and, since she has never shown any propensity for doing either, it all sounded perfect for her.

WE WERE VERY UPFRONT with the Meridian regarding MIL's need for LOTS of activities. We were very clear that their extensive schedule of activities was a huge factor in our choosing the place. In theory, they had activities going on every hour from 7am until after dinner every day of the week. Very specifically, their schedule showed dominoes (42) scheduled three times a week, bingo and other card games 4 to 6 times a week, social hours every day, ceramics classes twice a week, bible studies, a book club, poetry readings, musical groups, and loads of various exercise classes. We checked off all the activities that we knew MIL would enjoy and, according to the schedule, there would be at least 4 or 5 hours of activities - in addition to meals - that she would enjoy. It has never been difficult to get her involved in things. Pretty much all you have to do is say "come on, let's go do X" and she's raring to go. I figured she would have very little time to sit alone in her apartment.

I did express a concern that the apartment they were showing us was rather a long and winding way from the main activity rooms and that she might have trouble finding her way there and back. They told us that it was the only available apartment in the size we wanted but they promised to have someone go get her and walk with her down to all of the activities we had checked off for the first several weeks - at least until she fully learned her way around.

(From her apartment to the main activity center is at least a quarter mile hike and requires no less than NINE turns down various hallways as well as a trip up/down a particular elevator while avoiding taking wrong turns down other hallways that look nearly identical or getting on the wrong elevator! Both DH and I got lost a couple of times but since we don't have alzheimers we didn't panic and were able to get ourselves reoriented. So, their offer of guidance didn't seem over-the-top because I figured all new residents needed that assistance.)

We made it very clear that the busier MIL stayed, the happier she would be but that she would definitely need someone to lead her to activities until she learned her way around. Because of the long long hike from her apartment to the activity rooms, we even purchased a scooter for her to ride and made sure she still remembered how to drive it safely. MIL had used a scooter for a period of time several years previously after breaking a hip. Driving it was obviously stored in long term memory because she had no problems with it at all.

Well, the promised guidance NEVER happened. Instead, it turns out that the Meridian has basically turned one wing of the place into a separate "assisted living" facility with its own small dining hall and sitting area. The staff in that area leads a half hour "game time" of one sort or another once a day and, while they tell families the Platinum Plus residents are free to engage in any activity offered throughout the facility, they subtly discourage them from actually mixing with the rest of the residents.

The Meridian still call it "independent living" though because the state of Texas requires assisted living facilities to be licensed. Basically the "platinum plus" dodge allows them to avoid licensing! Other than meals and the short daily game-time, residents in the "Platinum Plus" plan are pretty much left to vegetate in their rooms.

Knowing MIL had dementia problems, they stuck her in that wing. A staff member then showed her the way to that wing's dining hall and told her about the once-a-day activity in that wing's sitting area. Not once was she ever shown the way to the main activity center nor even shown how to find her mailbox which is in the main part of the facility. Nor were we told that if she wanted to participate in any activities happening in the main area - or even go get her mail - she was on her own.

I walked MIL around and showed her where everything was when we first moved her in, and then again each weekend when we went to visit. And, all along I was assuming staff members were guiding her to/from these places on a daily basis. We gave her a copy of the Meridian's main activity calendar with stars by all the things we had already told the Meridian she would enjoy doing. We wrote on the calendar that someone would come get her to take her to the starred activities and that she should be ready when they got there. Well, she got ready but then no one ever came for her! At first we didn't believe her b/c, after all, she "forgets things".

I've since found out that MIL actually managed to find her own way to the front desk a couple of times to ask about activities that were shown on her schedule. In each case, apparently she was either told that the activity had been canceled and sent back to her apartment or she was told that she was on the "platinum plus plan" and should follow that much more limited schedule of activities instead.

Well, needless to say, after three weeks of this she got angry and depressed. At first, on our weekend visits we thought she was just having trouble getting settled in and that things would get better. For example, when she told us she HAD NOT played dominos a single time since she got there, we assumed she had merely forgotten. When she told us she wasn't allowed to go to the activities on the main calendar, we assumed she was confused.

She always cheered up and enjoyed being taken out to lunch and the three of us spending time playing games and getting her stuff unpacked, etc. so we kept thinking things would get better. Eventually tho, just shy of one month in her new apartment, MIL threw a tantrum and they called us on a Tuesday afternoon wanting to take her down to their "Health Center" for a "couple of days" for observation and medical evaluation. A doctor would see her and possibly prescribe additional medication for her depression.

In theory, each resident gets 10 free days in the health center before any additional charges set in and they pointed out that the visit to the health center wouldn't cost anything. We approved the visit and also thought it would be good if there were a medication that would help calm her a little. DH asked how much it would cost if she stayed more than 10 days but kept being told that someone else would have to call him with that info. No one ever did.

When we arrived the following Sunday to visit we found her more agitated and angry than ever, and physically much deteriorated.

Basically, they had put her in a room with a bed and four walls - not even a TV, no magazines, no art, no NOTHING. The only alternative to lying in the bed all day was to come out and sit in the sitting area where a TV was blaring so loudly that conversation was nearly impossible. She had been there five days by that point.

When we arrived at 9:45 AM, she and a half dozen or so other patients were in the sitting room - all either sleeping or staring at the walls. The TV was blaring some inane soap opera - no one was watching it or paying any attention. A couple of staff members were at a nursing station talking to each other. They didn't even look up when we came in. There was a "health center schedule of activities" lying on a counter showing that, at 10:30 that morning there was supposed to be a "current events" activity. 10:30 AM came and went and nothing happened. At 11:00 there was supposed to be a worship service. At 11:05 I went to the nurses station and asked WHERE the worship service was being held. The nurse said she did not know. I asked where the 10:30 AM activity had occurred and she tried to tell me "in the sitting room" until I pointed out that I HAD BEEN SITTING IN THE SITTING ROOM WITH MIL since 9:45 AM and that unless they wanted to argue that a soap opera on TV was "current events", it HAD NOT happened. At that point the other nurse intervened and admitted that the activities on the schedule that day weren't happening because the activity director was not there.

So I asked if the activity director was ill. Come to find out, the activity director is there Monday - Friday only so no activities actually happen on weekends. "So basically, you're telling me that as far as this schedule is concerned, everything shown on the weekends is a lie?" I asked. The nurse admitted it was and that she really didn't know why they put anything on the schedule for the weekend because pretty much all that happened was that the patients got fed and visited with their families if any came. She assured me that during the week they had regular activities just as the schedule showed.

Further, although we had been told that the health center was for TEMPORARY services for residents when they got ill and that no one lived there permanently, it was clear from walking around that in fact every other patient who was in the health center was really a permanent residents. MIL's room was the only one that was totally bare of anything except a bed. The rest were furnished with personal belongings - just as MIL's apartment is furnished with her personal belongings.

At that point, I started getting suspicious of everything we had been told. I got the the Independent Living Center activity calendar and the Platinum Plus Calendar, for the rest of the day, went looking for each and every activity on the calendars. NONE of them happened except for a worship service in the Platinum Plus area put on by volunteers from of a local church. Even the game shown on the Platinum Plus calendar for Sunday afternoon didn't happen. Of course, none of the weekend staff knew anything.

On Monday, I started pressing for MIL to be moved back to her own apartment... not that I want to leave her living there but, at least in her own apartment she can read magazines or choose whether or not to have the TV on. I was told she could not go back to her apartment until the doctor released her and that the doctor wasn't going to release her for several weeks because the new medications took that long to stablize! Furthermore, we finally learned that once her ten free days were up, she would be charged an additional $160 PER DAY to stay at the health center!

According to them, it would not be safe for her to return to her apartment until the meds were stablized b/c she "might become depressed" and try to commit suicide.

At that point I went ballistic. First, MIL becomes angry and starts acting out BECAUSE the Meridian did not provide the services they promised to us. Then, they move her to an even less stimulating environment, start giving her drugs to calm her down, won't let her move back to her own apartment, and want to start charging her an additional $160/day on top of her monthly rent of nearly $3000/mo! They won't listen to me that while MIL has clearly stated that she is ready to die and wishes God would let her, there is no way she is going to commit suicide because she believes that is a sin. And they won't listen to me that her behavior is a direct and very rational consequence of the situation THEY have placed her in by depriving her of the activities that were promised to her!

Fortunately, because they moved her down to the health center based on a phone call, neither she nor we had ever signed their "temporary agreement" agreeing to pay $160/day for care in the health center. I started using that as leverage to get her out of the health center telling them that neither she nor we could afford $160/day and that, if she stayed there, they were going to be taking her as a charity patient because they WERE NOT GOING TO BE PAID. We had never agreed to an "auto draft" for her regular rent so they would have to sue her to collect.

Funny how quickly the doctor they had selected to "medically evaluate" her decided she had stablized on the meds once they figured out they weren't going to get paid if they kept her there. They're going to let her go back to her apartment but now admit that she will not have the activities we were originally promised. And, they want us to agree that, if she acts out at all, they can take her back to the health center and this time we have to agree in advance to pay the bills.

I now believe the Meridian never expected or intended MIL to stay in her apartment for any length of time. They used that as bait to lure us into moving her with the intention of shuttling her into their "health center" (nursing home) as quickly as possible.

We are desperately seeking another facility to move her to. I would take her home with us but we have a 2 story house and don't even have a bathroom on the ground floor and there is no way she can possibly climb the steps in our house.

Any suggestions??? And, does any body know of any place where families actually post reviews of assisted living facilities. I don't want to walk into another disaster like the Meridian!

Thanks for reading all this and thanks for any advice you can offer. Apologies for all the typos but I'm shaking with anger as I write this and am ready to throw a bigger tantrum than MIL possible ever could.


Follow-Up Postings:

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RE: new to this forum - long rant! - advice appreciated

I am in Texas - what town are you in or what is the largest city near you? Carolyn


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RE: new to this forum - long rant! - advice appreciated

Bevangel, you've had a horrible experience. I hope you can find a better facility for your MIL. I certainly don't blame you for being so angry and upset. Have you spoken with the administrators and owners? Maybe you'd have a legitimate legal complaint and consulting a lawyer would be worthwhile.

My mom has been in two different assisted living facilities here in the Sacramento, CA area. Although both places had their shortcomings, it was nothing like you described. Both places were part of a much larger organization so they had strict guidelines they adhered to. I checked out a smaller private AL too, but decided against it because it seemed similar to what you described. A whole lot of talk and a lot of promises but with little follow through.

Good luck with your search.


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RE: new to this forum - long rant! - advice appreciated

Wow what a mess! The facility just out and out lied to you about almost everything. You would be justified in making some sort of legal complaint against them. I applaud you for being so involved with her care and welfare. I'm sorry I can't offer any advice. All I can do is send you best wishes and hope that you will be able to resolve this quickly. Good luck and keep us posted on your progress.


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RE: new to this forum - long rant! - advice appreciated

Barker_Tx, we are in Austin, Tx and if you have any suggestions, please email me at bevangel_72(at)yahoo.com.

A big problem we're having is the cost of all the facilities in Austin. MIL gets about $1100/mo social security and about $900/mo investment income. All of her money is invested in CDs however and none of those mature until next March, so even though know she needs to start spending down the principal, we'd very much like to wait to cash one out to avoid the early withdrawal penalties.

In the interim, DH and I are supplementing her living expenses. But, both our jobs are currently "shaky" so we really can't afford to supplement more than about $1000/mo and even that is a MAJOR stretch. If either of us actually loses our jobs, we're going to eat through our own financial cushion very very fast!

In Amarillo, MIL's social security and investment income came really close to covering her expenses and she would cash out a CD about once a year to put enough in the bank to cover the rest of her expenses for the year. The only thing we were supplementing was her medication management at about $400/mo.
Moving her down here and paying the $3000 non-refundable move-in fee to the Meridian ate thru pretty much all the extra cash she had on hand. So, until next March, we're going to have to supplement every penny above about $2000/mo that it costs her to live.

As for the Meridian...

I have talked to the administrators until I am blue in the face. They just keep shifting their stories to cover their a**es.

First they claimed that they intended for another resident who attends almost all the activities in the main area to go and get MIL and befriend her... but that that resident moved out shortly after MIL moved in. When I pointed out that 1) they never TOLD us the volunteer resident had moved out and 2) THEY were the ones who made the promise and, if they couldn't find a volunteer to fulfill the promise, they should have assigned a staff member to do it, they changed their story.

They NOW claim that the only activities they EVER promised to take MIL to were the ones in the Platinum Plus wing and that, if we understood anything else, it was just a misunderstanding on our part! They won't respond to the fact that we talked repeatedly about how much MIL enjoyed playing the dominoes game called Forty-two, which was shown on the MAIN schedule 3x per week and is NEVER shown on the Platinum Plus schedule, and which they very specifically stated they would make sure she got to play. They also ignore the fact that we talked very specifically about my concern that she would get lost trying to get all the way down to the main activity room by herself and discussed the need for her to have a scooter because it was too far for her to walk. The area where they hold their once daily platinum plus activity is right around the corner from MIL's apartment. She can find her own way there quite easily and doesn't need a scooter to go that far. But, "we only said we'd get her to the Platinum Plus activities" is now their story and they are sticking to it.

As for the non-events on the health center calendar: According to the administrator, the "current events" activity on the health center calendar would have happened except that the volunteer that leads current events on the weekend was unexpectedly called out of town. The "worship services" on that calendar was a reference to the worship services happening in the Platinum Plus area (as if any one living in the Health Center could POSSIBLY have made it up there since it is at least a 5 minute walk by a healthy person!) The "social hour" was a reference to the fact that, about 3PM the nurse came around and gave each resident a cookie and some cranberry juice!

As for the non-events on the Main Calendar: their story now is that "our independent residents lead most of the events that are scheduled and, if they decide not to hold them, we ask them to let us know so we can revise the calendar but, if they don't, that is nothing the Meridian can do."

And, as for scheduled afternoon game time that didn't happen in the Platinum Plus wing: "our staff member was there at the scheduled time to lead the activity but none of the residents showed up, so after a few minutes, she left and went to take care of other duties."

As I said, they're covering their a**es!

As the situation now stands, MIL is back in her apartment and we have been told that they will "remind her of all activities, including those in the main building, when they go in to give her medications." They will also tell her where the activity is happening (as if she can possibly find it on her own) and that, IF a staff member "has time", one will walk her down to occasional activities in the main building. I would bet a million bucks that no staff member will ever have time!!!! Bottom line, she will be left to vegetate in her room until we can move her out.

The only reason we even looked in Temple was that Austin seemed so expensive and, as one went further out from Austin the prices seemed to drop. We figured we could afford the time and gas to drive 50 miles to/from Temple once or twice a week more easily than the prices of similar places in Austin.

BAD PLAN! Obviously the staff at these places need to know that family members can and will drop in at any time of the day or night! Otherwise some of them are going to take advantage of the fact that they can pretty much lie to you with impunity.

I don't want to file a lawsuit or bring other legal action against the Meridian as long as MIL is still basically in their control. No telling how they might take it out on her! Further, a legal action would probably be unavailing because all the promises were made verbally --- nothing in the written contract about them. Once MIL is out though, I intend to sic the state on them for running an unlicensed assisted living facility and also to post bad reviews at every location I can find.

Meantime, we're still looking for a good situation for MIL in or near Austin that is somewhere within reach of our budget.


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RE: new to this forum - long rant! - advice appreciated

Talk to the Council on Aging if you have one, the "Alzheimer's Association, State Insurance Commissioner,and could you move her back to Amarillo or ask the people there for a recommendation. By the way, if you start supplementing her accommodations, you might be libel for all. I would suggest you talk to a Elder Lawyer to find out how to protect both your income and hers. Most places have to take her income and state aid if this is the only thing a person has. You do need some legal advice. Do you belong to a church. Certain churches do have nursing homes avaiable at reasonable prices. Check also the YMCA or other agencies. Hope this helps Good luck


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RE: new to this forum - long rant! - advice appreciated

Mariend - unfortunately, assisted living is totally paid for by the resident - a nursing home is a different situation however.

Bev.....unfortunately, I don't have any suggestions for you in your area (I am on the West side of Houston). I can recommend a wonderful place here in Katy ($5K per month!) You are probably correct about the family needing to 'drop in at any time, unexpectedly' just like a nursing home situation.

I know with nursing homes you can get a list and find out what sort of complaints/deficiencies the state has encountered. My Dad is currently in independent living part (he is 96) and that costs hims $2500.00 per month.

Have you looked into a smaller, 'group' home? where there are maybe 6 residents? I would think that would provide a lot more 'personal' attention, although perhaps the residents are more mentall impaired.

Carolyn


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RE: new to this forum - long rant! - advice appreciated

barker - I suspect the place you're talking about in Katy is the same place my brother's MIL was living till she passed away a couple of years ago. Brother and SIL were very happy with it and have recommended it to us but Katy is about a 2.5 hr drive which would make going to visit her difficult and popping in unexpectedly nearly impossible.

I have looked at a couple of group homes in our area but, in both cases, all the other residents were much farther along in their alzheimer's progression than MIL. I think she would be VERY unhappy with that. Tomorrow I'm looking at a new place (just opened in January) that is a specialized Alzheimer's care facility with just 22 beds.

I've been assured that over half the current residents are still functioning very highly and that they have activities (games, puzzles, conversation hours led by a staff member, gardening, exercises, etc.) going on at least 10 hours a day and, that except for special things like a ballgame that a resident specifically says he/she wants to watch, they don't turn the TV on until after dinner in the evenings. The description sounds great, although how we're going to swing the cost ($4800/mo) until some of her CDs mature, I really don't know.

Guess we'll take it one day at a time and hope for the best.


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RE: new to this forum - long rant! - advice appreciated

Bevangel, just a cautionary note about expectations. As I mentioned above, my mom has been in two well run assisted living/memory care facilities. At both places she started off in the AL section and this last place eventually moved to the memory care wing. Both places had activity directors and an activity calendar, yet both places also canceled many activities.

The reasons for the cancellations varied and were understandable. Some of the activities were run by volunteers, so if they were sick or unavailable, the entire activity was canceled. Sometimes the staff member leading an activity was called away or caught up in a special meeting. Just today my mom's ALZ group was scheduled for a frozen yogurt shop field trip and I planned to join them. Since I live about 30 minutes away, I called beforehand and discovered that the trip was canceled because the staff member in charge had worked an emergency shift last night.

This kind of thing happens all the time, and I think it's simply par for the course. The activity calendars are guidelines for what the staff hopes to accomplish, but they're definitely not set in concrete. While I've been visiting with my mom, I've seen the entire memory care wing staff scrambling because a resident fell or something else unexpected happened. Obviously, as a result, any planned activities are put by the wayside.

Marketing directors and administrators can promise you the world, but they're not the ones dealing with the residents. Unless there is a huge staff, it would be pretty hard to oversee 10 hours of activities and take care of residents who need help with bathroom functions, dressing, mobility, medications, etc.

I know how difficult this must be for you. It was difficult finding a good place for my mom, a place that would care for her as her dementia progressed. I'm very pleased with the care she is receiving and think the staff is warm & caring. But it's definitely not perfect.


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