I’m always on the lookout for nontraditional elder care options. As we face a growing elder population, we are going to need some out of the box thinking and smart innovation to meet the high demand for elder care and elder-friendly housing.
A recent New York Times article highlighted one such option: continuing care at-home, an offshoot of the more well-known continuing care retirement communities. The NYT refers to the at-home option as a CCRC without walls. The goal is to keep people living comfortably and safely in their homes for as long as possible and for as long as the person desires, but with the option to move into assisted living if needed.
Instead of moving into an independent living apartment on a CCRC campus, people remain at home. Members are assigned a “care navigator” who monitors their health daily living needs. This hybrid aging at home with the option for supportive home care services and residential care could be attractive to baby boomers.
However, there are some downsides. The main one is cost. While the at-home version of the CCRC is cheaper than the traditional format, it’s still requires a hefty entrance fee (typically tens of thousands of dollars) plus monthly fees. In many cases, elders sell their home and move into more affordable housing in order to cover the costs. This is not a financial option for everyone.
There are also medical requirements to enter such programs, with a dementia or Parkinson’s diagnosis, among others being disqualifiers.
So it’s not for everyone, but it could be a good compromise for those who can afford it and want to remain in their homes as long as possible.
My local newspaper (and former employer, I must disclose) has unveiled an investigative reporting project that is putting a much-needed spotlight on the rampant deficiencies in Georgia’s senior care communities. The Atlanta Journal-Constitution’s Unprotected series recounts heartbreaking stories of abuse and neglect, how potential crimes were never reported to law enforcement and how residents are at risk no matter how upscale a community markets itself to be.
If you’ve ever had a loved one in a senior care facility, you likely will be able to relate to the reports included in this series. Families know all too well that such facilities are chronically understaffed and offer such poor pay that those with questionable backgrounds who lack professional experience are often hired. While family members struggle to pay the several thousand dollars a month that these facilities charge, their loved ones may be suffering and unable to defend themselves.
My parents spent time in care facilities in New Mexico, and I saw first-hand the deficiencies. My father suffered multiple falls and an altercation with a fellow resident at his memory care center. The center used an off-label medication to help keep the patients with severe dementia “more manageable.” It’s a common tactic used at such facilities, though of course none would admit it on record.
My mother’s facility was woefully understaffed, leading to my mother not being cleaned after soiling herself, and almost getting the wrong medication or treatment multiple times. It was only because I could be there daily as her patient advocate that further harm to her was avoided. When the laundry facilities broke down for a week, my mother had to used soiled towels and linens, putting her compromised immune system at risk of infection.
I hope you get a chance to read the Unprotected series and share with others. Encourage your local newspaper to conduct similar investigations if they haven’t already. The more that these criminal acts can be exposed, the greater chance we have in forcing changes in a corrupt system that is putting our elder loved ones at risk.
Any kind of bipartisan effort in today’s toxic political climate is reason to cheer. When it involves uncovering nursing homes offering substandard care, it’s all the more reason for caregivers to be grateful.
Pennsylvania senators Bob Casey (D) and Pat Toomey (R) joined forces to release a report titled, “Families’ and Residents’ Right to Know: Uncovering Poor Care in America’s Nursing Homes.”
An investigation into reports of abuse and neglect at nursing homes in the senators’ home state prompted the report. It focuses on struggling nursing homes that have been designated a Special Focus Facility. There are 88 nursing homes that are participants in the program. Approximately 400 nursing homes are identified as candidates. Participants receive more frequent inspections and are identified to the public; candidates are not.
What the senators wanted family caregivers like you and I to know are the names of the hundreds of SFF candidate facilities, so that we can make the most informed decision possible when it comes to our loved one’s care.
You can review a list of SFF participant and candidate facilities that’s included in the report. You can also read disturbing reports of neglect and abuse that has been reported at these facilities, which includes allowing residents to escape, providing inadequate medical care and sexual assault.
I discovered a facility that my father stayed at briefly post-surgery. At the time, the facility admitted they did not have the resources to care for my father, who was in the mid-stages of dementia and often wandered.
Much more needs to be done to ensure that our nation’s nursing homes are providing proper care to our loved ones, but providing this bit of information helps families make more informed choices.
Those of us who have cared for our elders know how advanced age and health issues can lead to social isolation. On the younger end of the spectrum, those with learning disabilities can feel ostracized from their peers. An innovative program in New York brings these two groups together and has created a beautiful sense of purpose for all involved.
Daniel Reingold, the CEO of the Hebrew Home at Riverdale, founded HOPE in 1995, originally as a way to fill job vacancies at the nursing home by employing those born to drug-addicted mothers, The Associated Press reported. HOPE stands for “Health Care Offers Permanent Employment.” Over the years, the program has evolved to include those with autism and intellectual disabilities.
The thread that binds these two seemingly disparate groups is caregiving. The youths assist nursing home residents with daily tasks, and the nursing home residents help the young carers with academic tasks like reading, by giving them real-world history lessons by sharing their life stories, and by being patient as the youths learn to perform caregiving tasks.
It’s a win-win situation. The kids can graduate and work at the nursing home if they choose, or explore other job opportunities. Nursing home residents are energized by the presence of young people, who are eager to show them what they can do on their smartphones and other gadgets.
The kids also learn important lessons on life and death that their peers might miss. Favorite residents die, and the students have to learn how to cope with the loss.
I love to see innovative solutions to social issues that often get ignored, and hope such success stories will inspire others to implement similar programs.
I think all caregivers end up on a guilt trip at some point, but this blog post from gerontologist Dr. Elaine Eshbaugh is another good reminder to let go of that guilt. She discusses the negative emotions that many family members feel when placing their loved ones with dementia in a nursing home, and why caregivers shouldn’t be so hard on themselves.
And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.” I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control.
via Nursing Homes and Guilt Traps in Dementialand — Welcome to Dementialand
Whatever your opinion of CNN, I give them kudos for the investigative report, “Sick, Dying and Raped in America’s Nursing Homes.” This is a subject few want to discuss, but it is happening more often than one realizes. I am grateful for the network for shining a spotlight on these crimes that have often been swept under the rug.
The accounts are harrowing and sickening, but I encourage anyone who has a loved one in a nursing facility or is caring for an aging relative to read this report. Armed with knowledge of the despicable acts that have occurred at these places, you will better be able to protect your loved one from such crimes.
Don’t expect the facility management or even law enforcement to be much help. Nursing homes are reluctant to admit wrongdoing, as it can open the company up to lawsuits and cause them to lose precious Medicaid and Medicare funding. Law enforcement claims their hands are tied, as residents with dementia make unreliable witnesses. (To this latter defense, I counter, what about infants and toddlers? They can’t provide detailed accounts of abuse either, yet those cases more often result in charges and convictions.)
Be vigilant, and don’t be afraid to demand an investigation if you suspect abuse of any sort. While I am a strong caregiver advocate, I have no sympathy for those who prey upon the elderly. Yes, the pay is low and the job is grueling, but there is absolutely no excuse for abuse of any sort. Can you imagine how frightening it would be, to be bedridden, perhaps losing your mind to dementia, and then find yourself attacked in the middle of the night by a caretaker? I’m even more glad now that I quit my job so that I could visit my mother each day while she recovered in the skilled nursing facility. But not everyone can do that, nor should we have to.
We must demand better protections and more accountability for nursing home residents. As one heartbroken daughter said, the nursing home worker who raped her 83-year-old mother with dementia stole her last shred of dignity. He received an 8-year prison sentence after pleading guilty to third-degree sexual assault. While that was a longer sentence than some of the other rapists discussed in the CNN report, he had been accused of similar crimes before, but was never charged. That’s why it’s so important to fight for the protection of our loved ones, because we may be able to prevent future crimes against one of our most vulnerable populations.
Anyone who has spent any time in a hospital, whether as a patient or a caregiver knows that seeing the doctor is like finding the holy grail. I remember endless hours just waiting for the elusive doctor to appear, just so he could take a cursory glance at my mom or dad, flip through the chart, and then provide the signature we’d been waiting all day for. This is especially frustrating during hospital transfers.
A recent University of Missouri survey of that state’s nursing home staff members found that there is poor communication between the doctors at transferring hospitals and physicians on staff at the admitting nursing homes. The survey also found that orders are often incomplete and difficult to read. The transfer process can take hours, creating a frustrating experience for both staff and families.
I wrote recently about the guilt I felt about Dad’s last minutes in this world. His DNR order had not transferred from the hospital to the skilled nursing facility, so the nursing home staff were legally required to take all measures to save his life when he collapsed in the shower. The result of that failure: my dad suffered broken ribs as he died.
The blame for this failure is not just on the doctors, hospitals and nursing homes. As family members for loved ones who are ill, we become patient advocates. I remember wondering if the DNR order for my dad had transferred, but I never inquired with the staff at the skilled nursing facility. It had been so difficult to get Mom to agree to the DNR at the hospital, I frankly did not want to deal with that drama again. I hoped Dad would pass quietly on his own, but as many of you know, that often doesn’t happen.
So yes, as patient advocates we need to demand better communication between the hospital staff and nursing home staff. But we also need to check behind them, and then double-check, to make sure medical care orders are recorded properly. Dealing with these issues may be frustrating, but it is much better to know that you tried than to have to live with a lifetime of regrets.