This story is not unique. Read the many comments at bottom of even worse treatment others have suffered after paying for “skilled nursing” care.
I’ve been blogging recently about what happens in American healthcare when predatory investor-driven companies start moving into care industries because of, as Pro Publica puts it, “easy money and a lack of regulation.” My first two posts were about recent articles in The New Yorker on companies that are more interested in sales growth than in caring:
- “For-profit hospice is a vast crime scene, and private equity is holding the knife”
- Healthcare’s moral crime scene, part 2: private equity takes over a nursing home
As many of you know, my mother died in October. What we haven’t disclosed until now is that it happened in horror story #3: she passed after a single week of “respite care” provided by the local outlet of a growing chain of assisted living facilities.
Our mom, a 93 year old cardiac patient, had been in the hospital for ten days, and was discharged to go “home with assistance” because she was steadily improving. The respite facility’s director, an RN, evaluated Mom in the hospital, declared her appropriate for their respite care service, and took payment in full (in advance) for two weeks.
Mom’s primary caregivers were, as usual, the family’s daughters (my sisters), who had been with her throughout the hospitalization (and for countless hours every year). Mom and they discussed the discharge plans at length. Believing that a good respite care facility was an excellent bridge for continued progress between hospital and returning home, they purchased a two week stay after discharge. An important part of the decision was the website’s promise of “Strengthening during physical therapy.”
We soon found out that the facilities and understaffing were so precarious and stress-inducing, and so many things went wrong, that we didn’t dare leave her alone. To the contrary, after just one week, our mom said she was so stressed that she wanted to get out of there, and two days later she passed away.
Our complaint letter and management’s response
Much has been written in healthcare and other industries about how to document and report a service problem and how management should respond.
My sisters carefully composed a detailed seven page letter to management, listing everything that went wrong, from a wrong-height toilet seat, to a shower chair with missing handrail (perfect for assisted living, not!), to the Bluetooth room key that kept failing, to staff that couldn’t recognize the on/off switch on her oxygen, to stress-inducing fire alarms with nobody coming to help. That’s only a few items; their entire letter was published yesterday on The Health Care Blog (thank you THCB!).
And the facility’s response? After walking through the whole letter with my sisters on a call, their emailed bottom line was, verbatim:
“The services listed for respite program were available to your mother.”
Well, their marketing people need to talk to their facility managers.
- Their pretty website says “24-hour caregiver staff for support when needed.” What we actually got was a call button system that often got no response; it failed entirely when the internet went down one night; the backup system was manual walkie-talkies that depended on someone being at the front desk, which was often not true; and a repeated call one day for help with a wheelchair transfer got no response. (Imagine if we had trusted the advertising and left Mom alone: she would have been alone in her room, unable to reach anyone.)
- Their required Uniform Disclosure Statement says a staff of 27 on the 7-3 shift. What we actually got was word from one agency worker that they only had two that day, another who said (while emptying the wastebasket) “We have to check on them every shift,” another who couldn’t respond for 90 minutes because she was the one serving dinner that night. And then we experienced one continuous period of 18½ hours with not a single check-in. From 7 pm to 1:30 the next day.
- The website brags about “Senior living technology to keep you safer.” That must be the Bluetooth wristband room key that kept failing: it’s the only way to get into the room. So every time they had to take it away to fix it, my sister couldn’t leave, because Mom wouldn’t be able to get herself to the door.
“Caregiver vacations,” huh?
The National Institute of Health says respite care “provides short term relief for primary caregivers.” It’s not medical care or memory care or assisted living; it’s not paid for by health insurance and it’s not regulated by the Federal government. It just replaces, for a while, the ordinary duties provided by family caregivers, so they can get a break.
Indeed, this place’s respite care page describes it as “short term senior care for many situations such as caregiver vacations, temporary rehabilitation post-surgery, or trial stays for a prospective resident.”
What actually got: so many worries that my sister slept every night on an air mattress on the kitchen floor.
And just to rub some salt in it, when we demanded a refund, they said they wouldn’t charge for the days after we left (thanks!!). And then they had the gall to say they wouldn’t add an Overnight Guest charge for my sister – who stayed overnight because it wasn’t safe to leave!
Yes, they advertise “caregiver vacation,” then considered charging us for not leaving Mom alone overnight when that became obviously unsafe.
The company’s true focus: grow the business
I learned a lot from googling the company: all their media coverage talks about management’s desire to climb the rankings of biggest companies in the industry, as they acquire some facilities and build new ones.
- Six days after Mom passed, they announced that two more locations will open in 2023. Way to go, guys – scale up that success! “Senior living is an important investment focus,” said the private equity real estate guy.
- Their Twitter feed doesn’t talk about caring; they mainly chat now and then with an investor they admire.
- In their first 20 years they grew slowly to 11 locations. Then new management took over, and they’ve since grown 64% in the past three years (up to 18 now), with more on the way.
- Every industry has problems these days with staffing and budgets, but in May this company found budget to hire a new VP of Acquisitions and Spending.
People like this make me puke, from the RN director who said our mom would do fine there, to the operations manager who responded to our detailed horror story with a flat “The services listed were available” and “we won’t charge you an overnight guest fee,” to the executive leadership who think it’s all fine and they should grow some more.
Mind you, we are a savvy and empowered family of smart shoppers. If this happened to us and our mother, how will your family do when you need such services?
Mom’s tree
We are left with the memorial tree we had planted in her name at Quiet Waters, the lovely park on South River, near her home in Annapolis. (See photo at top.) It’s a southern magnolia, the aptly named Magnolia grandiflora for its big fragrant flowers. Her neighbors had one she liked to look at from her patio. Now there’s a young southern magnolia with her name on it, near the gazebo where she loved to sit in her later years. (Photo, right)
Have you experienced similar shortfalls?
I’m sure most people’s experience with long-term care (assisted living, respite care, etc) has been good. But this has been horrifying for us, as our actual lived experience was so different from the lovely tour and pretty website, and I can’t imagine we’re the only ones.
Is this a wider problem than we imagined? Have you had anything similar happen to you? Respond in comments, please.
I had a similar experience with my 93 year old mom at a memory care facility. She fell one evening and they called and told me she just had a bruise on her forehead. They just put her to bed and did not do a proper evaluation.
It turned out that she had a broken hip. I had a camera in her room and I could see that she was continually wailing in pain when they moved her. They completely ignored her pleading and forced her to get up for meals.
I was out of state and could not go to her immediately. I kept calling the facility and asking them to check on her because it was obvious that something was wrong. They told me she was fine and just needed to get more exercise.
I decided to cancel all my meetings and drove six hours to bring mom to a hospital. They did a hip replacement, but said there was too much tissue and muscle damage for a complete recovery. She died a couple of weeks later. Their neglect and lack of response to her and my calls was no less than elderly abuse.
This facility is new and beautiful and VERY expensive and owned by a large organization that has been growing over the last 20 years. But they do not have proper staffing nor a full time nurse as advertised. They knew I had a camera in her room and yet they neglected mom. I can’t imagine what they do to residents that don’t have cameras.
That’s so appalling and infuriating, D. Thank you for sharing it here.
On Twitter, @TrishPatton replies:
I’m in Canada, but we have similar issues. My mom lives with me in large part because I was leery of institutions. After COVID, frankly it’s terrifying. And our govts do not seem to care to any great degree.
I’m so sorry your mom and your family went through that.
Iam so sorry. I had no idea this happened. I hope it gives you some peace that when your mom was in my care she received the best care possible and it was an honor to be her caregiver
You were an absolute angel for her, Kristy. We were so eager to get her back into your loving and capable hands.
Your mother was a beautiful soul, and I am honored to have met her, and you and your sisters.
This is all too familiar. My Mom, at age 100 and 1/2 had a couple of bouts of diverticulitis at home which resulted in her being in the hospital for 4 days. Upon discharge, the hospital said she would benefit from a brief stay at a rehab facility. They gave us some options and we chose one closest to home for her.
There were critical reviews of the facility, but the hospital assured us that they had confidence in the place. Two days after her arrival there I noticed some swelling in her left leg. Knowing that she had a history of DVTs in that leg, I alerted her nurse who said she would deal with it.
She did not. No one did. Their idea of rehab was to get Mom out of bed once a day for a 20′ walk down the hallway with a walker.
After five days they said she was ready for discharge. I went to pick her up and with no help at all got her out of the facility and after a 10 minute struggle into the car. We got home and I had to use a desk chair as a wheelchair as she could not walk.
My brother and his wife arrived and we noticed that her leg was dangerously swollen. Another trip to the hospital where it was discovered that she had five blood clots in her leg. A procedure was done to prevent the clots from circulating to her lungs or brain and cause a fatal situation.
Four more days in the hospital and she was discharged to a nursing home where she will probably remain for the rest of her life. She can not stand on her own and can not walk more than 2 or 3 steps and then only with assistance.
Yes, she is over 100 years old, but prior to all of this she was able to walk, take care of herself and enjoy life. Now, due to the inadequate, inept care at the rehab facility her quality of life is greatly decreased.
Had they followed care standards for her condition none of this would have happened. The care she is receiving now is extraordinary. I only wish she had gotten that level of care when she needed it.
I’m so sorry to hear this!!
It really is disgusting when someone who’s being paid to provide care does not do it and there’s no recourse. Did you go back to the hospital and talk to them about their “confidence” in the place?
Is the rehab place part of a big chain? If the stay was paid by Medicare there should be some enforcement available. Our case, long-term care, is not a federal program – no insurance.
Candlelight Cove facilitated an admission for my dad without consent or advisement of his legal health care advocates. I found a ghost town of a facility at 5 pm with most locked in their rooms—my dad was alone and dying with no comfort from hospice meds because they all drained out of his mouth & cupped like a bowl of water on this clavicle.
The admission director went crying to my dad that I was causing problems by asking Covid-related facility problems on Feb. 2021.
The admission person only would talk to my stepsister who had no legal authority.(This person had been fired from a news job for anti-Semitic comments).
My dad was on a boatload of psychotropics to keep him sedated after tricking him into memory care saying his wife would be with him.
He fell out of bed with a head injury and died a week later. Even the Maryland ombudsman said my dad didn’t have the same rights as Florida seniors and that she knew the staff at Candlelight Cove very well. Sad, sad. Sad. The facility singlehandedly alienated my dad from those who advocated for him.
So very sad, Dave. My Mom actually sufferred with a broken clavicle while in care, which the facility MD identified as “just a bruise” for 3+ days, until we took her to the ED (again) against medical advice. The hospital told us she needlessly sufferred. This was only one of the preventable “events” that occurred. It’s horrifying and I’m so sorry to hear that your Mom went through this. Heartbreaking.
I’m sorry this was your experience. I’ve encountered this same kind of poor care twice and good care twice.
My father was placed in a rehab facility after surgery for strengthening and to get used to care for his ileostomy bag. Because of his IL bag, his fluid intake should have been monitored and they were not. He was rushed to the hospital in kidney failure four, four different times in the course of just a couple of months. The ER physicians were concerned that he would not survive but he did.
Upon a meeting with the director of the facility, she stated he was ready to be released to home and he was caring for his IL bag. We were shocked! He was not strong enough to walk more than a few feet and had the CNAs caring for the IL bag. We walked the Director down to his room and right there was a CNA cleaning his IL bag. She blew it off as a one time thing. He had excellent insurance. They released him to an independent living facility but there were some staff members around. He continued to fall on a regular basis and have the staff care for his IL bag. He ended up dehydrated in the hospital again. We finally said enough and we brought him home on hospice.
My sister’s father-in-law was in a LT care facility and was supposed to be on oxygen. Every time a family member visited, every single time, his oxygen tank was empty. It took a screaming tirade at the nursing station before the situation was rectified even though this issue had been pointed out numerous times.
In both of these instances, these people had family around. What happens to those who have no one to watch out for them?
Greed has ruined the health care system. Greed has ruined everything. Period.
Horrible, Victoria! And too common. And you’re right – what do people do who don’t have family to advocate for them as you do?? It’s a big problem.
Was the long-term care facility part of a chain, or a small independent? If you give me the name I can look it up, if you’re not sure.
I say this because not all places are terrible! I know of people who getting good, solid, professional attention. I want to figure out how to identify which ones are likely to be heartless and not do their job.
Greed hasn’t ruined the WHOLE system. I know lots of people who do really good hard caring work. But *unregulated* greed leaves the door open for bad people to do bad things and take the money and run. Those are the ones we want to block.
Hi Dave. I eagerly await what input you can offer regarding identifying heinous, bogus “care” facilities.
Bart, I don’t have easy answers. I’ve considered starting a spreadsheet for crowdsourced contributions: a list of facilities and who owns them. It would be useful to see if there’s a correlation between big-chain ownership and how well the job gets done. Want to help?
I’d also love to hear about the two cases you mentioned where you saw good care!
To answer your question, “what happens when a patient has no one around?” They suffer and die. That simple.
Thank you for contributing, Roberta. Is there no hope? Is doing this at a pats facility in any way better than doing it at home?
One big difference is that the family doesn’t have the decline under their nose. But if I picture myself in this situation it’s much worse to do that in a brutal company’s place than alone at home.
I just read the account of what happened to Amy’s mom, and I am so sorry for her and her family’s loss. I am also horrified and angry that the elderly get treated this way and the facilities get away with it.
I, too, have a similar story with a facility down here in S.C. where my grandmother stayed. The facility was a new memory care and assisted living facility. It looked beautiful, clean, and well-staffed. The staff seemed very competent. Unfortunately, it turned out that they were not issuing meds the way they were supposed to. They also weren’t watching the patients who were prone to choking because their swallowing reflex wasn’t working very well. This happens to patients with dementia.
The facility had a separate dining room for patients who needed to be watched closely. For some reason, that dining room was merged with the regular dining room. My sweet grandmother was one of those patients who needed a watchful eye when she ate her meals, and she died of aspiration bc she was not being watched as she ate her lunch.
They did not deliver what they promised. Total neglect.
I have almost 24 months of horror stories about everything I had to fight over about my mother’s care. From the hospitals to nursing homes. I just could not believe that things actually worked like that and is was over $9k a month for that care to boot. The biggest problem is that the government never listens and the big corporations are making a killing!!! My mother died 10/03/22 she was 92. She died because she had had enough and refused her medication which caused her stroke. I think that we all need to decide when it’s our time to go and quit allowing this BS with the big corporations on making big profits. I’ve only touched the tip of the iceberg here.
Nancy, I’m glad you spoke up here and I’m sorry you went through (at length!) what we went through short term. Our mothers died 11 days apart, a year apart in age. My mom’s memorial service is next month, and we’re going through disposing of her belongings. It hurts, and it’s disgusting that some SOB company and its investors made money off this.
Your mother “had had enough.” My mom looked at proposed interventions, treatments and meds, and asked, “Toward what end?”
I wonder what rating your nursing home has on Medicare Care Compare. https://www.medicare.gov/care-compare/?providerType=NursingHome
As an End of Life navigator and support person for over 25 years, I have seen first-hand how hospice care has deteriorated. Bringing loved ones home can be a difficult end of life journey. I encourage everyone to research and put in place your wishes for your end of life care. As an aging “baby boomer” there is not enough trained personnel to care for our aging population. Relying on “crisis mode interventions” by family and friends is what had led to dismal end of life care options. The time is now to educate yourselves and others on quality options for good care. Knowledge is power.
“Knowledge is power” has been a byword of the patient empowerment movement forever. Good to meet you, Lynn.
I’m interested in what you do as an “End of life navigator.” Got a website, and any tangible advice on “educate yourselves”? Any tutorial people can turn to?
I live in a rural area and have hosted 2 Death Cafe as a starting place c e for people to talk about death. I have also done informal discussions at local libraries and put out written info for anyone to take. I make myself available to anyone as a support thru end of life issues. This is a gift I share, I do not charge for sharing knowledge. We all die, dying well takes information. I am on Facebook under Lynn Martorell.. ni e to meet you also. Many blessings.