The realities of long term care homes, the way I see it anyway. Can you show me I'm wrong?

Babalou, I want to thank you for your advice. My personality is to be a mouse, but in my role as advocate for my Mother I have had to learn to be a lion. I made an appointment to speak with the DOC this morning and we went over my concerns, which I presented to her in a formal letter. I felt it was a productive meeting and she promised to get back to me later this week after talking to her staff. Nothing can ever change if we don't speak up, and I do feel my concerns have been validated. At the very least they now know that this little mouse can also be a lion if provoked.

Cwillie, I would take your list of "experiences and have a sit down with the DON in the spirit of "how can we fix this so that this is a safe place for my mom to stay".

We live in a rural area vstefans, and my choices are limited to three, the one actually in our town and two others in neighbouring towns. I'm not certain that there is any difference between them but the only way to know for sure is to try them out. I suppose we could look in the city where my sis lives, but then there would be the difficulty of getting her there. This place seemed nice enough, the residents were clean and well dressed, the administrator very thorough when we discussed her needs, no shortage of staff, but the proof is in the pudding as they say. It just seems that they are so used to going about their daily routines that it never occurred to them that we were new or that I might want to know about her day. I don't know what I should do in 6 months when I will actually be out of the country for a week.

Cwillie, that facility sounds like a poor match for your mom. I would vote for trying somewhere else. Mom is very confused, and maybe does not even remember to use a call button - assuming she had one and they showed her how. And, maybe they treat their long term residents better...or maybe they don't.

CWillie, that doesn't sound as restful as you though it must have been. The choking episode was frightening. What would have happened had you not arrived when you did?

Sure wish it had been a more productive and restful week for both of you.

Well, I'm picking mom up soon after her week respite stay at the Villa. Although I chose this nursing home because it was an easy 10 minute walk from my house, I also knew that of the three local options it had the longest wait list and figured that was something of an endorsement. So how did it go?

I'm disappointed, and if you have read this thread you know my expectations were not high.We arrived on Monday morning and I felt abandoned almost the moment we wheeled in the door. The greeting was cursory despite my having called to say we were on the way. The charge nurse accepted our meds and showed us to our room, then we were pretty much left to figure the rest out for ourselves. Although staff was abundant no one paused to greet us or introduce themselves. I decided to trust that the information I had gone over with administration would be sufficient and left.

Tuesday, I arrive in the afternoon and find mom agitated, she tells me she has been walking all day looking for home. She claims someone slapped her bottom and told her to behave, but was confused so I didn't know what to make of it. Apparently she was visited by the doctor and perhaps a clergyman, but I had no interaction with the staff while there.

Wednesday was a good day, she seemed to have benefited greatly from the social interaction and activities. Maybe we should put her name on the wait list?

Thursday I dropped in after supper and found her alone in her wheelchair facing the corner at the end of an unlit hall. Obviously confused, he said she told them she wanted to stop playing. WTF? I took her to her room and got her settled for the night
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Friday was quiet, but on Saturday I arrived shortly after supper and again found her alone,dressed in a hospital johnny and clutching a basin. She was red in the face and obviously distressed. I knew immediately she was choking, that sort of stuck in the throat king of thing that dysphagia people get. WTF again?
I questioned a psw who said she knew nothing but got the nurse on duty to come and pay her some attention. Finally I found someone willing to take the time to talk. Seems the meals on weekends are often problematic, and the chicken was very dry. Uh, mom is supposed to be on a soft, moist diet??
She also told me that mom had somehow gotten herself out of bed Tuesday night and they found her in an adjacent empty room sitting in a chair. I had been told she was doing well and there were no issues, so obviously no one thought I needed to know this
There is more, but this is too long already. I figured that this wasn't the Ritz, but at least they wouldn't kill her... now I'm not even sure about that. LOL? :(

Windy, I'm in the same spot as you--no kids, no family (brother will be specifically EXcluded from POA-type decisions in pending update of legal docs). I have it set now that POA falls to my partner, but I expect to long outlive him. In which case it falls to my attorney, who is also a friend, and in succession to her junior partner. With wishes spelled out in fairly great detail. Next step will be a serious look at long term care insurance, having found an agent of all such things that I actually trust.

I am a former nursing home resident of 8 years. During those 8 years I was shipped around between 4 different facilities. I witnessed the worst and best in those 8 years.
My favorite was, believe it or not, a County run facility out in the suburbs of Buffalo, NY (My hometown). It was an over 100 year old building that was originally used for the sick, infirm and homeless. It had indoor courtyards and a large outdoor patio area. There was a branch of the NYS public library inside the building on the second floor. There was computers with internet access in the library, inside the patio area and in the therapy department as well. There was a cafe specially built for resident use and a large, central activity room. The activity calendar could've been better but in all reality, you can't please everyone.
I started in a semi-private (a room mate) then got a private later during my stay. Like I said, it was a County run facility so getting a private room didn't cost any more. All I had to do was make the aware that I wanted a private and when the first one came up, I jumped on it. Kind of first come, first served. You have to stay on the staff if you want a private room, make sure you're on the "supposed" waiting list if there is one.
It always sucks when you're yanked from your home and put into a facility but you also have a choice. A choice to try and make the best of it. That was a hard lesson for me to learn but I did it.
I was finally discharged in Feb 2011, after 8 long years of residency. It literally changed me as a person and it changed the way I live my life today. Believe me I had my fill of awful nursing homes as well but that's a different answer for a different question.

… at which point people will take over from the republic, go about things in their amateur shambolic way, doing the best they can, and society's normal service will be resumed.

I've always felt it was six of one and half a dozen of the other.

No I'm not that old. I'm still building stuff, doing electrical jobs, riding bikes, paddling my kyack and running around after my wife's horses. But I'm looking down the road. With no kids or family around how can people plan ahead to avoid several horrible years of nursing home warehousing?

We've all been to the nursing home to visit granny and we all say, please God do not let me end up here. Well I know gods pretty busy so that leaves the state of MI which by the time I'm senile and goofy will have likely seceded from the union into a right wing militia republic where old folks are left on the street to die.

Hey, Windy, you're not THAT old! I'm older than you are and still planning garden project that probably only someone half my age should tackle!

Garden Artist, as a transplant to MI from WV many tears ago, it's hard to believe that any state could out do the corrupt politics of WV, but Mi has done it in spades. With all due respect to your many well thought out points, I guess I'm just fishing for answers to my particular situation. No kids, getting old, ain't no one to save me we I'm demented and building my garden tractor accessible bathroom. I may have to start a new disscusion thread. My apologies to Cwille for getting off course.

Windy, I suspect my response won't be consistent with the reasoning of a lot of people, and truthfully I have difficulty justifying my own situation. But what I'm trying to do is what my aunt and one of my parents' close friends did: they had in-home help which they hired and remained at home until a week or less before their deaths.

However, and this is the big caveat, neither had dementia. I visited my aunt a few weeks before she died - she was sharp as a tack. If it weren't for the physical issues, there wouldn't have been any sign of decline.

With dementia, I think the responsibilty, sometimes burden, shifts to the family to make the decision, which as we all know is often a heart and gut wrenching decision. I do believe it is possible if the dementia isn't severe, but only with outside assistance for medical and home aide care.

My mother had some level of "dementia, Alzheimers' type", but it wasn't incapacitating. My sister had "chemo brain" after her last radiation treatments, and she recognized very clearly that she was losing brain function. In some ways, that pain is harder to deal with than not knowing what is happening.

What do you say to a 56 year old sister who cries because she recognizes her brain functions are deteriorating? I stepped up my caregiving to help compensate and to provide backup and we avoided most problems that had earlier arisen. But it was emotional and sad beyond description for both of us.

In your words, she KNEW the train had left the station, and she wasn't on it.

That sounds pretty simplified but we both know that in reality it can be a real challenge. That's the part that I'm always trying to keep in mind, to see it as a problem to be solved and avoid the emotional burden that can accompany it.

One of the biggest hurdles now though is getting the house in condition to accommodate a streamlined, assisted living. After seeing the exorbitant costs of facilities, I was sure I could do better with more targeted assistance. We also benefit from a small group of outstanding neighbors who act as advance scouts and alert me to possible problems.

As to the elder person recognizing the onset and/or advance of dementia, I don't really have a good answer as there are so many aspects of dementia. I know that I've seen a mental decline in myself and try to combat it. Perhaps it's a function of keeping one's brain active, developing self tests (I use math for me), but having the courage and strength to recognize it is a challenge in itself.

For my own plans, it's more of a physical issue, a very personal one with a plan which I don't think would be agreeable to others.

Re the fear of dying uncared for in some decrepit place in Michigan, if Gov. Snyder remains in power I think more people will be facing that.

Seriously, I know that I spend more time worrying about it when I come to this forum. When I visit DIY forums, I think more positively. That's not to say that this forum is negative, but the focus is different. Perhaps those of us here also need to visit forums that can uplift us and balance out the negativity of caregiving.

Do you still visit electrical forums? House repair forums? There's always a need for qualified electricians to answer questions and to remind folks that monkeying around with electricity when you don't know what you're doing can be a quick trip to the hospital, or worse. Sharing your expertise might help balance the worry you're feeling.

And there's also the philosophy of living life to its fullest because you never know what will happen. Then if you do become "infirm", you can at least look back on a rewarding life. Sounds trite, but in reality it's not. But also hope that we get a new governor who isn't supportive of cutting the tax benefits of Michigan residents' pensions.

Windyridge, I think that by the time one's reasoning has gone one is pretty much past caring about the indignities of the bog-standard care home. It's people who care about people with dementia who get upset about them. The people who actually have dementia have their mind preoccupied by other things - such as having lost it and where it's got to, and why the whole world has suddenly become so strange and frightening.

I have to say, I'm not cheering myself up here. Apologies if I'm getting anyone else down, too.

Garden, just curious, how does one avoid the NH when the reasoning has gone? And how does one know when the train is leaving the station.

In the movie I'm Still Alice, this was the conundrum. I haven't been able to come up with a plan to avoid dying uncared for in some horrible NH warehouse the state of Mi has chosen for me.

Go for the low-rent facility with caring staff every time. It is sad that people's worlds must become smaller as they age and in particular if they suffer cognitive decline, but then simpler activities and slower pace can be more welcome.

Attitude is everything.

I've seen shabby buildings with very good staff, and good buildings with bloody awful staff, one care home that was so appalling I don't know where to begin, and one that I wanted to move into.

But for me the key test lies in what the staff do when they meet you and your loved one together. If they talk to you first, don't go there.

Or when we get older we become a carbon copy of our parent(s) and refuse to leave our current residence? I have no children nor siblings, so I need to make that decision while I can still think on my own.

I was lucky. I found a privately-owned facility that was made up on 12 houses that each held up to 12 residents. One room was a shared room--ideally husband and wife with a private full bath. The other rooms were private with a half bath. Food was home-cooked and depended on who was doing the cooking. There were activities for residents, or they could just sit outside on the porch and watch the world go by. It was clean and very reasonably priced. Mother's Social Security and VA Pension paid for her room and board. She was happy there until dementia set in. It was perfect for her, because she would have been lost in a huge one that required locking yourself in and carrying your key.

As a baby boomer, I plan on living in our house until we can no longer maintain it. My daughters have been given instructions that I am then to be placed in an AL apartment that has monthly trips up to the casinos in OK and lots of activities.

Cwillie, there's another possibility which might change the dynamics of the elder care situation - the baby boomers aren't passive; they may in fact contribute to if not force a massive change because of their sheer numbers and demands.

I agree with what Ashlynne says, no one person, no matter how loving, can provide the level of care shifts of workers can. I am in no way dissing those who have placed their family members in care.
And I understand frequentflyer's point, in that many of the things I find most objectionable matter little once you reach a state of advanced dementia. When the world around our loved ones becomes an unfamiliar place safety and kindness is the most we can offer no matter what the setting.
I would love to hear Sunnygirl1's dream, I too have dreams about what care should look like. I've done a lot of research on line and have found wonderful innovative models for aging in place and of care, from retirement communes to the Eden Homes concept. The problem I see is that the standard of care seems to have changed very little for those with less financial, mental or familial resources, and with the pressures of the aging baby boom I fear quantity will triumph over quality.

I also think FF's points on seeing the facilities through our own eyes, at our ages now, is a really critical issue on how we view long term care.

I have experience primarily with SNFs and only a brief approximate one week experience with a memory care unit on a long term basis so my observations are more generally limited to shorter term care facilities.

One SNF was bad; we had to intervene and document, but eventually sufficient healing took place that return to home was possible. The longer term care facility was part of the same prominent chain, the facility was lovely, but the care was minimal. The staff to patient ratio wasn't sufficient - at dinner time the staff was overloaded. The tony decor belied the actual care.

I still have negative thoughts about having to even use any kind of facility at that time and wish that we could have found better alternatives. But I know more about them now than I did then.

Yet another facility in the same chain was outstanding. It was in an area known for high medical standards, however. Perhaps the location made the difference, perhaps the administration was the dominant factor.

I do know that I will not spend my own years in a facility. If/when the time arrives that I can't live where I want, with my own hired help, I definitely will not sacrifice just to mentally vegetate in a situation that I find less than tolerable.

I think the concerns are valid, but I agree with Fregflier for the most part. We see the shortcomings from out point of view. How would we feel living that way? I know now, but what about when I"m 80. I think I may see things differently then.

When I visit my loved ones in assisted living, I often consider how is this compared to being at home. Before my loved one went to Secure Memory Care, she was in a regular AL facility. It was clean as a pin, so no complaints there. They had an activity director and she worked hard to get all residents involved. They had live music performed by some group or person at least once per week. The food was delicious. They had several sitting rooms and two outdoor areas. Some of the more independent apts had private balconies. They took the residents shopping at least once a week. And held church service every Sunday. There were regular visitors who came in all during the week.

I was very pleased to have my loved one there, because she got none of that at her home. She had hardly any visitors and could or would not cook. it was the best environment she had been in in many years.

Oh, and if you are not happy with a roommate, the places I know of are happy to move you elsewhere to find a better match. It's not perfect, but for many seniors or those with disabilities, it's much better than the alternative.

Oh, I smiled when I saw this thread, because I have been daydreaming lately about building the most beautiful, helpful and expertly designed Assisted Living facility in North America! I'm serious. I have no idea I would fund it, but I have a dream.........

I think we forget that these NH or AL facilities are for profit. Stockholders
expect returns... Frontline did an episode on AL-- http://video.pbssocal.org/video/2365054620/ -- If you watch this, you will understand that these facilities are filling a need that they are not prepared to really fill nor are they regulated consistently. Many elderly really need skilled nursing care ( not AL) which is very expensive and again good care is not always provided. Sometimes the elderly patient is not generally happy with any of his/her options. Sometimes they long for the life they had. Sometimes they become bitter. It's not an easy thing for anyone. It's sometimes a blessing when they forget.
We like to believe that somehow if we do the right things it will make it better for them, but mostly I think not. You just do the best you can to keep them safe and comfortable. You do it because it's the right thing to do. I think many are not prepared to go down that road with their elderly relation. I can't really fault anyone because it is a huge undertaking. I have left my role as daughter behind and have been the caregiver for my 92 year old father for 6 years. I have in home help which makes it manageable. I have the right equipment to take care of him. My dad went to his lawyer and took care of the
details before he went into this decline so I'm able to keep him with me and make decisions. His doctor of 26 years and I are on the same page when it comes to his care. We both understand what my dad wishes are... We have good and bad days. I feel that we have a good chance of getting through this with some dignity. I hope so.

Cwillie, life sucks, you suffer, then you die. Fell any better now? I try to help.

Flyer made a good point about how we see care facilities now and how we see them when we old and senile. I helping my folks hang on in their home, dangling by the last thread of safety and common sense. This is what they want but if they were in assited living, even a crummy one, we could probably avoid the next insuline coma er trip, broken arm or broken hip.

So I'm just waiting them out and guessing what the next big catastrophe is going to be.

No-one can care give alone 24/7/365. I cared for my mother in her home for four years and bought her a rollator but she wouldn't use it in the house. Instead she got about hanging onto the walls and furniture and was forever falling. With physical issues of my own I couldn't lift her unless she co-operated. At 2 a.m. one morning ... and thankfully I was awake - I lived in the basement - there was a huge thud and I found her out of it on the floor in a pool of blood. She was taken to hospital and I realized that I could no longer do this. For her sake and mine she went into a NH 2.5 years ago where she's clean, fed and safe.

She would never engage in any of the activities as the rest of the residents were beneath her in her view - A1 narcissist life long. Currently she's bed ridden, barely able to speak, sleeps all the time and weighs less than my dog. Her time on this earth is coming to an end. I did the very best I could for her and have no regrets. When it comes down to it she's far better off with nursing staff around the clock. No one person can do around the clock care.

cwillie, I think we are looking at nursing home through our own clear mind and physical ability to get up and move about. Yes, we wouldn't want any part of it ourselves at our current stage of life.

For me, I can't wait to have someone else do the cooking as I hated cooking all my life, science experiments that went terribly wrong. I wouldn't care if it was fried fish on Friday, and hot dogs on Sunday each and every week. And Bingo is fun to me, but I know not to others.... where playing cards might be fun for them, but not for me. Ok, I will do a 1000 piece puzzle but by myself, thank you.

I think once our minds are a bit more clouded, and we become immobile, nursing homes at least offer other people to talk to from my generation.

Living with an elder or someone from a younger generation doesn't help change our like of music from our own generation... I find myself saying "is that music?" when I hear rap.... on my gosh, I am sounding like my parents when I use to listen to the Beatles. Would I want to hear rap all day long?

Same with taste in TV shows.... I remember my parents saying "there's nothing good to watch"... well, now I am saying the same thing and here I have 500 channels to choose from instead of 3 or 4. If the family is watching "Big Brother", sorry that doesn't interest me... anyone interested in PBS?

Windyridge, I fully understand about choosing the lesser of two evils, at least they are warm, fed, clothed and supervised. I just have been mentally placing myself in one of these places and find myself having to look at it out of the corner of my eye, so to speak, or else I would descend into soul sucking despair. Life sucks and then you die.
Being at the tail end of the baby boom maybe things will have improved greatly by the time I reach the time for extra care, on the other hand maybe those ahead of me will have sucked the system totally dry and I will be left with whatever remains.
Ugghhhh. I'm having just a bad day.

I'll try again. Many valid points here, but I have to wonder, is it almost a question of which is the lesser evil? Elders in danger at home or elders supervised, fed and housed in a not so nice facility.

In my parents case, the NH would have to be pretty damn bad to be worse than their nasty little house.

Most places, fortunately, don't have to be shared. Each person or couple can have their own apartments. The greatest problem I see is trying to maximize the use of the land by having more than one floor and providing shared resources, e.g. walking paths, to be used by everyone. People can't just go out onto their own patios and yards to sip a cup of coffee in the morning.

I think a wonderful model for an assisted living community would be small single-story clusters, maybe with 4-6 apartments per cluster. The apartments would be built on slabs, so that wheelchair access is easy. Each apartment would have a patio and a little bit of lawn. The problem with such a design is they would take a lot of land, so probably wouldn't be practical within a city where land is so expensive. There's nothing wrong with putting them outside the city, though. These developments would be perfect for someone who still wants to feel they have a little home of their own. They are probably available. We have some communities that come close here in the Birmingham area. Texas has several IL communities that follow this model.

So often we house elders in a way that is convenient for workers and families. We don't consider what their individual needs are. Some people are probably fine with a roommate. Other people may want to live alone, but not care if they have access to a patio and yard. Multi-level housing is fine in this case. But to take an outdoors type person and put them in two rooms on a top floor of a building just doesn't seem right. We need more options that are affordable.

One reason I hope my mother can stay at home as long as possible is that she would have a very hard time adjusting to AL life. She likes to sleep as long as she wants, stay in her pajamas all day, eat when she wants to eat, and avoid being around people most of the time. I don't see any AL communities around that would fit her life. It's not a neat, orderly life, but it is the one she prefers.