ELDER MUSIC: Maria Muldaur
Another Answer for Elder Care

ELDER ABUSE: Stories From an Assisted Living Resident

category_bug_journal2.gif Today, rather than a report on another kind of elder abuse (we'll get to that soon), I want you to know about a remarkable, first-hand account from inside one of the 40,000 long-term care homes in the U.S.

Last month the journal, Health Affairs, published a report from a 62-year-old man who has been a resident in assisted living homes for the past eight years. That sounds young, you say. Yes, but it is due to early-onset Parkinson's disease. He writes:

”[Y]ou’d probably be quite impressed by my current location. It’s remarkably clean and attractive; the food is high quality and abundant; the lawns are manicured. Operationally, it runs smoothly.

“There are, however, a few glaring issues, the foremost being accessibility. Shockingly, most assisted living facilities aren’t completely wheelchair accessible.

“Sure, there are lots of ramps. But in every facility I’ve ever visited or lived in, the bathroom sink isn’t wheelchair accessible. Just try to shave or brush your teeth when the sink is way up there. You can’t.

“Where I live now, I’m on the first floor and fortunate enough to have a beautiful outdoor patio—but my wheelchair is too wide to negotiate the doors, so I can’t wheel myself out onto it.

“Additionally, spaces that residents would like to have access to don’t exist in most facilities. Mine, for instance, has neither an exercise room nor a nondenominational meeting center for meditation or worship.

“These might be seemingly small concerns, yet they have an oversize effect on residents’ quality of life, especially when you consider that most of us can’t leave easily or often.

“But the real problem isn’t operational or structural. It’s emotional.

“Most residents in assisted living facilities, by necessity, live secret lives. On the outside, there might be a calm, even peaceful veneer. But beneath the surface, all of us are susceptible to the ambient despair that is a permanent component of life in this type of facility.”

That despair can take multiple forms. Before moving into an assisted living home eight years ago, Martin Bayne had been a journalist and a Zen monk, and now he is the proprietor of The Feathered Flounder, a blog similar to our own Elder Storytelling Place with stories from people age 60 and older. He writes movingly in his report of the desperate emotional baggage some residents bring with them.

”At four feet, ten inches, and eighty pounds, B could easily get lost in a crowd. And that’s exactly what she did for the first two months after she arrived. B always managed to find a quiet corner to sit - alone, with the paperback she always carried.

“One evening, as I sat outside with my camera, trying to get a few good shots in the fading light, B suddenly appeared in my viewfinder.

“'Can I take your picture?' I asked.

“She seemed to ignore me, her eyes focused intently on her book. Then, seconds later, I heard a voice, not of an eighty-nine-year-old great grandmother, but of a young girl. 'Sure,” she said, “go ahead and take my picture.'

“As night descended, we both sat quietly, absorbed in our own thoughts.

“'He just left me,' said the tiny voice in the darkness.

“'Who just left you?'

“'My son,' B answered. 'One day he showed up at my home in Maine. He said we were going to spend a few weeks together at his place in Pennsylvania. Then -' Her voice trailed off.

“'Then what,' I said softly.

“She paused, and took a deep breath. 'Then he drove me here and left me.'

“I felt as though a great tectonic plate had shifted. 'It’s okay, B, you’re among friends now.'

“She set her book down, and even in the faint light of the new moon, I could see her smile.”

Unlike many long-term care newbies much older than he, Bayne had all his faculties when he moved in along with his history as a journalist. Describing himself as someone who “likes to make sure we all understand one another and communicate well,” he requested a meeting with the management of his first long-term care home.

”The three executives and I met in my room, and the meeting soon turned fractious. I don’t remember exactly what the chair of the housing board said, but I challenged it. 'That’s not fair,' I told him. 'You get to go home every day at five o’clock, but this is my home.

“He stood up, pointed his finger at me, and roared, 'This is NOT your home. You just lease an apartment here like everybody else.'

“I realized right then that the residents of 'their' assisted living facility, among whom I now numbered, didn’t have a voice. Those of us there, and in many other such facilities, arrive in this, our new society, alone, possibly ill, often without the comfort and support of a spouse we’d been married to for decades.

“We eat meals in a dining room filled with strangers and, for perhaps the first time in a half-century, sleep alone in an unfamiliar bed. We then usually find ourselves silenced by, and subjected to, a top-down management team whose initial goal seems to be to strip us of our autonomy. And it is in this environment that most of us will die.”

'NOT your home.' Really?!

It is shocking that even in a clean, attractive place he describes, things as basic as wheelchair access and a properly placed basin are ignored. And it is additionally shocking to me that in all the millions of words I've read on aging over 20 years of research, this is the first “insider” report from the front lines of long-term care I've read.

I urge to read Bayne's entire report at Health Affairs, and good for them for publishing it.

At The Elder Storytelling Place today, Darlene Costner: Men in Black


B's story is the saddest thing I've ever heard.

My heart breaks! The question that comes to me as I read this....What can I do? to improve this kind of treatment?

Thanks for publishing this and giving yet another reason for us to NOT want to end up in one of these places. I have re-posted on our FB page to give an wider distribution. We want to create a series of Villages in Portland to create an alternative way to age with grace and dignity. See VillagePDX.

Martin's writing ability is outstanding; he brings to life the struggle most of us will face sooner or later. A couple of years ago I went through volunteer training with a group here in Memphis whose purpose is to monitor the problems of nursing homes. I was assigned to one that is a floor in a local hospital. I did this for about three months and was practically in tears each time I came home and ultimately came to the conclusion that I could not do it. My emotional, physical, and mental self could not take the onslaught of smells as well as the air of hopelessness that prevailed. I still feel guilty of my inadequacy in dealing with such a needed function. I am 71, am certainly not a perfect physical specimen, but I still six teach online university classes, do my own housework, and tend to my extensive flowerbeds. I do not have long-term insurance, and the fear of disability is ever with me as it is with most seniors.

I firmly believe that we should all be allowed to stay in our own homes, even if we become incapacitated. It's cheaper and more humane to be cared for there and we can age and die with dignity.

Unfortunately, assisted living and nursing home facilities are designed for the convenience of the caretakers and not for the comfort of the poor people housed there. They are also 'for profit' institutions and we all know what that means.

I had read this article before and sent it to a friend who is investigating assisted living facilities. His comeback is, there are problems with all solutions. While I do admit that being cared for in your own home makes you vulnerable to the caretakers, I think if you have an advocate to speak up for you that is still the best solution. It's certainly one I hope to make use of.

Thanks for posting this story. It has been suggested to me that if and when I can't take care of myself I can legally just stop eating. I don't think I can be legally force fed. Does anyone have a better idea?

Let's all hope we don't have a son like B's, who apparently didn't discuss this decision with her before leaving her at the facility. We're never privy to all the details of these stories, but certainly talking to her about it while she was at his house would have allowed her to adjust to the idea.

I too had read Martin'e heart-breaking account before. How horrid to be in such a place with all his faculties intact, but--on the other hand--how else could he have given such a detailed report.

There's no ideal solution to providing lone-term care. While being cared for in your own home may be better, it often takes an extraordinary toll on the caretaker--even causing a devoted spouse to die before the one being cared for.

As I read the sentence "He just left me," it brought back the heartbreaking memory of the day my son and I left my husband at a nursing home for dementia patients. I had no choice; he had become abusive. But it was the worst day of both our lives. He said, "I'm not going to die here!" But of course, he did.

Our friends moved into a sprawling top of the line cruise ship assisted living building.

They kept on inviting us to go see the place, so we did.

The minute we entered the building, I felt like running away. Yes, everything was gorgeous, like a Hollywood star's mansion.

We signed in at the front desk, where attendants with teeth too white and shiny greeted us with canine grins.

Our friends were called to greet us, then we walked long, lonely halls, passing only hired attendants, who said "hello, Don" in an overly friendly, "I'm watching you" manner.

The place had a bowling alley, but not one person was bowling. The huge pool was empty, the knitting/hobby room was deserted.

Hall cameras noted our every move. Must not fall, you know.

I could have faked a stumble, just to test how fast the workers would race up, grab my geezer body and throw me in an ambulance, but I behaved.

We were told we needed to dress sharp for the dining room, no jeans, so we acted accordingly.

The dining room was sparsely occupied and lonely. Groups of people sat together, not talking, or some were raising a spoon half way to lip, then pausing, seemingly not aware of their surroundings.

When we entered the dining room, people stopped and stared as if in a cowboy movie bar scene.

If there was a piano player, he would have stopped, mid song.

Some people wanted to know if we were the children of our friends.

How much does the place cost per month?

The cost for two people, top floor, two bedroom with meals, is $7,500 a month.

All that money shooting down the laundry chute of a corporation.

Our friends had a lovely home, but they said they were tired of keeping it up, and they enjoy cruising.

So their new building is like a cruise ship, a manufactured home full of strangers walking halls, being asked how they are every time they turn a corner.

I felt imprisoned in there, like food inside the mouth of a praying mantis.

"Any questions?"

Our tour guide friend continued to extoll the virtues of the place..showing us how we could stop and eat in this or that nook and cranny.

I had a question.

"Is there anyone living here brought in against their will?"

"Oh, there is one woman on our floor."

"How do you know she's unhappy here?"

"Well, every time any of come face to face with her, say hello, she tells us to eff off."

I wanted to find that woman, shake her hand and smuggle her back to her own home.

There is absolutely NO WAY I will voluntarily sell up, move into one of these "gimme all your money and I'll fake liking you," homes.

They aren't homes.

They're prisons of fakery.

Prisons for people who want to be spoiled, catered to, bum wiped, while the owners drain your hard earned money.

Better to stay in your home as long as possible, even if you have to share it with a friend.

Retirement homes are big business, the same as universities.

Profit monsters.

There has to be a better way to grow old, to continue being useful, motivated, holding on to your dignity.

Oh, and another senior friend visited a posh senior home and saw a woman wandering up and down a hall looking for someone to talk to, as she rarely left her room.

But the wandering woman's son lived less than a mile away, yet rarely visited her.

I'd rather live in a pup tent than one of these cavernous corporations of greed.

Just so we're clear, what doctafil is describing is a retirement community few of which accept residents who need any kind of help or care.

What Martin Bayne describes is an assisted living home for people who need help in daily living and/or healthcare they cannot provide for themselves.

Caregiving is so stressful. A neighbor was under her granddaughter's care for several years and died of Alzheimers. The worn out granddaughter died a year later at age 49.
And one of my MIL's caregivers did not survive her by much. She was only in her 50's. (My MIL wasn't a burden, but the caregiver had been taking care of a man with Alzheimers who exhausted her.) So we have to understand that giving care is beyond the strength of many. I hope to see the day when caregivers are well paid and respected for the essential work they do.
I was a hospital aide when I was young, and I worked hard, was paid little, and was treated contemptuously by everyone, including some patients. What made it worthwhile was that at that age I really could be cheerful and energetic and make things better for people in a very grim place, a cancer ward.

Such insight, to hear from someone who can report from the inside of our long term care system. What a gift this is, because I believe that, once we on the "outside" better understand this experience, then we can and must create positive changes. I am inspired to be better.

It's been physically and emotionally painful reading these posts, and Martin Bayne's "Health Affairs" article. My own education in long-term care and related issues began about five years ago when my husband's parents began to rapidly decline. They had been very independent and able to tend to their own needs until their late 80's; then everything began to fall apart. Despite all their planning and frugality, they had never purchased long-term care insurance nor really learned about the realities of what would happen if and when they ended up disabled and unable to care for themselves. It has been quite an eye-opening five years. I now have experience with long-term care, both in assisted living and as an in-home caregiver, and have learned that both types of care need many improvements if we are going to be remotely able to humanely meet the need coming within the next 10-20 years. And I can relate to the demise of the caregivers. At 62,after almost two years of providing fulltime care for my 92 year old MIL with dementia, I am needing to acknowledge that this arrangement may not be feasible much longer. Some days I cannot wait for the opportunity to crawl into bed, which rarely happens before 11:00p.m. Fortunately, we now have 10 hours a week of in-home respite care. I don't know how we'd manage without it.

I'd like to hear from Dr. Bill with an update on his perspective on the state of care giving of elders these days.

Ronni, what doctafill describes is almost exactly to a "T" the facility my in-laws lived in for the last ten months of my father-in-law's life, and it was definitely an assisted living facility, not a retirement home. Doctafill does use the term retirement home in one paragraph, but he may have been using the term more broadly. The facilty in which my in-laws lived cost almost $5,000 a month for the two of them in a two room apartment. Rent made up about a third of that cost; the rest was based on "care needs" and varied from resident to resident. For the first eight months, the time while my father-in-law was still living, their care needs were very moderate; however, the administrators seem to be very creative at coming up with other "needs" they can assign you to, and charge for. My father-in-law, who is nearly bald, went one time to the in-house hairdresser/barber and paid almost $25 for a haircut we could have taken him out and paid less than $10 for. Never used that service again. There are so many connected services, like the pharmaceuticals provider, the medical services with doctor and physician's assistant who charge Medicare a lot of money each month, but seemed to spend less than 15 minutes per resident (taking vitals was about all the care they routinely received on-site, otherwise, they were sent out to the ER if something bigger occurred, or if it was a weekend or after-hours). There were several other services provided on-site, which came with hefty charges, something my in-laws did not understand, as they never saw the bills, which went directly to Medicare. We only learned about many services and charges many months after the fact, when we received the letters from the agency that monitored the Medicare payments. My father-in-law, who was wheel-chair bound following neurosurgery for a subdural hematoma, had been receiving "therapy" in the form of someone werapping a canvas belt around him and holding him up while "walking:" him on his walker few feet a few times a week. This was useless. He was 90 years old and his legs had been unreliable for some time, but after the surgery they were completely shot. Turns out, he didn't even want to participate in this. Yet Medicare was being charged several hundred dollars a month for his "therapy". I could go on and on with issues regarding their assisted living care. We ended up taking my husband's mother out of there a few months after her husband died. The last straw was when we discovered she had acquired scabies, but which we had not been told, and she was not being properly treated. I'm sure there are much better places, but this was recommended as one of the best in the area. It's part of one of the largest chains in the country and is publicly traded. So profits over people? Shocking!.

Yes, Cathy, I was describing an assisted living home, so that if a client develops dementia, they move into another part of the building, where the cost is even higher.

Cathy, doctafil is a 69 year old senior woman. Her mom, at 89, still lives in the family home, and 4 of mom's 6 children live within a fifteen minute drive.

Would I rather drop dead suddenly while still independent or fade away gradually, mostly in bed, in a nursing home? I'm not sure which I'd choose, if I could, but I cannot.

doctafil - I stand corrected, but the kind of place you are describing is hardly the norm.

Most assisted living homes are not anywhere near as grand as what you describe and those in which a resident can move from independent living through assisted to nursing care often have payment schedules that allow residents to remain until their deaths.

I'd rather die.

Not your home? Bloody hell. I think there's a lot of work to be done in regards to 'assisted living'. I have visions of living in a commune with my mates and care on hand if any of us need it down the track.

My father lived alone for over 20 years on a farm in Wales , UK and went into a local good quality residential home when he was 92 and he died at 98 .
On the surface that seems good.

I live over 400 miles away and I seemed to have constant battles with the home as new abuses came to light though they did not see it as that. The first was the discovery he was on a chemical cosh, a major antipsychotic drug, I asked why and was told that " all the residents are on it. It helps them settle."

They complained my father was ant- social and did not join in with their " games". This was bingo. He had never played such a game in his life and had no intention of starting at 92 years of age.

He complained during one visit off" those old things" they put on his bed.
I asked the staff what he meant. They told me they put chairs on his bed - not during visiting- to stop him going to bed in the afternoon .

Even worse one care assistant told me they always had difficulty waking him up at nine o'clock to give him his sleeping pills. They seemed totally unaware how gross their actions were.

I had a relative who worked nights for a time inside another care home again one with a good reputation locally.
She was told that residents had to be got up and dressed at 5.30 every day ready for the day staff.

She queried this one day when told to get up at 5.30 a woman who was dying.
" It's the rules . You must get her up."
So this woman whose family paid a substantial amount of money for her care was not even allowed the dignity of dying in bed but died later that day sitting in a public space.

I think I really need to have a discussion with my husband regarding care if I become too much for him to handle -- doesn't that sound funny?! Anyway, you know what I really mean. I would rather be shot than to be warehoused with a bunch of people who are either out of their minds or who smell so bad that it's unbearable -- even if I'm in the same boat. And the thought of eating institutional food whether I like it or not and getting up in the morning and going to bed at night on somebody else's schedule is detestable to me. I'm afraid I wouldn't thrive in such a situation and I'd soon be classified a "chronic complainer" and gagged and bound so I couldn't run away. Those poor people...

Do nursing homes allow you to take someone out for the day? Someone you aren't related to or don't know? Just to get them out of there for an hour or two to go for a car-ride or a little time in a park or even to my own home for a little while? I think that nursing homes are worse than dog kennels -- at least the dogs can go outside once in a while...

Some of the accounts here are heart breaking and describe incidents that defy common sense -- should never happen. Clearly there are elder care problems as I've been acutely aware of for years -- as have most of us who work in health care.

I've been a patient advocate since I began working in a variety of settings including hospitals. Facilities I've deliberately chosen to serve have been considered among the better care providers, but were often lacking in many ways.

I don't like to consider what some of the others I never served were like -- other than having on occasion substituted in a few, I have reason to believe they have some staff who genuinely go above and beyond in the care they provide.

The best organizations I've encountered are those offering multi-levels of care but they are also very expensive. Often they may be associated with various religious groups.

Individuals moving into a strictly Asst. Living environment might want to carefully consider such a move, since should their condition cease to meet the limitations of that functional category they would have to move elsewhere -- start their social life over again.

My personal preference is to remain "living in place" (in my residence) with assistance as needed. That option may not allow for the possibility medical needs and/or mental state could demand care i.e 24/7, so that remaining at home could be financially challenging.

I'm following options that include looking into a local community group forming in my area to help people live in place. REAL Connections is that newly formed group into which the individual pays a basic fee and members are mutually supportive.

Even in the best of facilities I've served there necessarily is a certain regimentation that does not appeal to me. Also, the variety of activities offered generally decreases as an individual becomes less independent.

I've encountered numerous individuals residing at the skilled nursing level whose interests are quite different than those provided in the offered organized activities. Additionally, I'd like to see more integration of computer/Internet activities, but perhaps that will develop, since my suggestions where I currently serve have been received as only that to date.

Probably those residents most pleased with their setting are those who have family, friends (maybe some they've made when they were more active) who visit often, have frequent contact, are patient advocates regularly interacting with staff and administration. Family, friends, resident need to have a realistic view of abilities and limitations of patients, staff and the facility they've selected.

Those who visit only occasionally, don't keep in contact with staff, then reach conclusions about care based solely on limited observation and patient's reports may not have the full picture.

I might caution, too, that life long family dynamics often are unknown to outsiders and may account for how they continue to relate to one another -- seems objectionable to others.

Also, I would caution about negating mobility activities. Staff use of a waist belt may be appropriate, warranted and significant for patients, even some described here -- dependent on many factors. A Physical Therapists assessment with all medical specifics known is advised. (I'm not a P.T. but understand the factors that enter into such treatment.)

I've had only a few patients who deliberately chose to stop eating -- not always wise or as easy as it sounds. Again, many factors came into play in how the person's life ended.

Some administrations are more dedicated to meeting a patient's individual needs than others -- an attitude and approach that is conveyed to all full time staff and contract personnel who may only be on site on irregular periodic occasions as needed. Find that out before you sign a contract -- get lots in writing.

I have grave reservations about the priorities in health care offered by strictly business-owned and operated organizations whether care facilities or therapy companies.

Listing on a stock exchange does not insure the quality of care any health care organization offers -- tells how much profit they make and that they'll likely want to find ways to make more. How will they do that?

I'm with Sky and, no, I don't have a better idea!!! Legally, they can't make me eat and, if it comes to that, I hope I have enough brain cells left to enforce my choice. Ideally, I will have exited in my own way long before things get to that stage.

The cruise ship facility sounds like a living hell. $7,500/month--that's criminal in my view! Somebody must be making a fortune.

I read your blog everyday via email and usually do not comment as I am so busy, plus others comment of pretty much what I would say. But I did want to comment on this. I own and operate a Residential Care Home for seniors, when I take two in. Generally, I like to just take 1 in, as in the beginning it is so much better for the resident. I just took in a 75 year old that has Parkinson's disease, and she was at an assisted living facility. When she got here, her ankles were so swollen that you would be shocked, and since she is overweight, the flaps on her stomach were raw with a terrible rash. She needed more help, so they brought her to me. The most important thing when caring for a senior is their emotions and being lonely. Most anyone can help dress, feed, etc. for a senior, but they need so much more. I run my home much like the Green House Projects, Eden Homes, and it makes such a difference to their well being. More homes are needed for them in a family environment setting, but it is so hard to set them up, abide by all the laws, etc. In my case, I had to sue the city board of zoning as they did not want to give me a variance to do this, based on the neighborhood objections. They sued me as well for breaking their covenants. Thankfully, I won both cases, but a lot of people do not want to go through so much to help our seniors, as it can be so frustrating and expensive.

Elder blogging since 2006, my posts have covered various issues around late life decisions-making-- geographic moves to housing choices to classes. What I've noticed is more focus on "worst case" stories than otherwise.

Being lucky Americans who had more choices than many, spouse and I moved into an apartment in a continuing care setting in Portland, Oregon, from New York City. We were in our 70s, spouse had heart attack in his late 60s.

For the most part it has worked well for us; we are in the same city with one of our children and her family. We might stay in our apartment till the end. Or not. The option for long-term care for one or both of us right here has been the most significant gift we can give our children.

I'd like to hear from others trying to make these tough decisions in their own lives rather than for elderly family. We can all use support.

We can echo the challenges and frustrations w/ care homes as my FIL & his dementia spent time here and in two "homes". The first place was nearby & hubby was there a lot, getting more and more angry with Dad's care, then moving him to the only other choice--much more expensive and full of those extra charges. The whole fiasco near his death included $1,000 one-mile ambulance rides, ping ponging Dad back and forth from the ER w/o our knowledge and finally, a calm week in hospice with kind and caring helpers. As if the pain and sorrow of dementia weren't enough, the greed and disregard for human feelings by the staff of assisted living places, and the hospital have left angry scars.

My husband started long-term care payments for me around 2000, but now we're locked into constantly rising payments for less and less future services. The whole program may go broke before I can use it! Husband's chronic troubles didn't allow us to start such a program for him, so who knows!?

And don't get me started about a dear friend's husband who died painfully this last January because he couldn't afford a colonoscopy...or the cruel idiots who would cut off health care for Americans before it even gets started...arghhh!

I work in a house with five bedrooms and five patients. It's gotten so sad that I'm having a hard time working there. I have 3 sweet little lady's that are precious. The owner of the house has let a lady move in that's totally different than them a danger to herself and my lady's. I'm so scared for them. I get to go home she's there with them. I just don't know how to handle this anymore. The lady is mean loud and disruptive One of my lady's is very scared of her. They never come out of they're rooms anymore. I'd really like to know if I can report this. There are 3 houses and they have all gotten terrible. I've worked for them since 2003. My e-mail is dawnann1959@gmail.com. If anyone has a suggestion I'd love to hear it. It seems like the elderly don't have a chance.

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