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.
Data released by the Centers for Medicare & Medicaid Services found that antipsychotic drug use in nursing homes has declined 9.1 percent for the first quarter of 2013. In 2010, over 17 percent of nursing home patients had daily doses exceeding recommended levels. The CMS launched the National Partnership to Improve Dementia Care last year and hopes to reduce antipsychotic drug usage by 15 percent by the end of 2013.
The overuse of antipsychotic drugs in nursing homes, especially to sedate dementia patients is an issue that strikes home for me. I watched my father suffer the consequences of being kept in a zombie state on these drugs. While I can’t know if my dad suffered while on these medications, my mother certainly did as she visited my father in this drugged state on a regular basis. My father only showed minimal aggression which probably could have been treated with behavorial therapy or milder drugs with less side effects. The main reason he was so heavily drugged was because like many dementia patients, he wandered.
I do feel for the understaffed, overworked and underpaid nursing home staff, who have no doubt found it easier to give patients a pill to keep them from becoming another problem to deal with. There is no easy solution, but filling helpless people full of drugs is not the answer.
Let’s hope the CMS initiative continues to be successful.
The Alzheimer’s Prevention Initiative is seeking those willing to talk about why they signed up with the registry. As I indicated that I would be wiling to speak out for the cause, I started thinking about my reasons for being an Alzheimer’s awareness advocate. The obvious reason is because of my father’s battle with the disease.
But I also hope to encourage others to not make the same mistakes I made. #1: The rare visits. If I could go back in time, I would have visited more, both when Dad was still at home and when he moved into the nursing home. #2: Being uncomfortable around Dad’s unpredictable behavior. If I had it to do over again, I would tell my former self to get over it and embrace the now, instead of regretting that Alzheimer’s had stolen much of Dad’s former self.
It got me to thinking about one aspect of Dad’s care that I never really thought about before too much. Wonder if Mom and I had somehow managed to keep Dad at home, instead of him being transferred to the nursing home for the last year of his life? I most likely would have had to quit my job, but hey, a year and a half later, I quit my job to take care of Mom. Maybe somehow with home health care, we could have managed Dad at home, even as his Alzheimer’s progressed.
This is one aspect of Dad’s care that I don’t regret. I think the stress of trying to care for Dad at home could have broken our family apart. And while I was not fond of the medications Dad received at the nursing home that turned him into a zombie, at home, he may have refused to take any medications, and who knows if those angry outbursts would have become more violent and dangerous?
I know there are many families who do keep their loved ones with Alzheimer’s at home and care for them until they pass away. I admire and respect that choice 100 percent. I think family caregivers need to receive more financial and community support. But on the other hand, I also respect the choice of placing your loved one in a good facility, where they can receive the supervised care they need.
One suggestion I would make
I found this article about the steps a dementia care center took to reduce the amount of middle of the night wandering by their dementia patients very interesting. The solution was simple and not nearly as expensive as medication. They simply offered the wandering residents snacks (a mix of naughty and healthy food) and the midnight snacks really seemed to curb their wandering tendencies.
I’ve written many times before about how Dad would wander at the nursing home. He was in a secure dementia care wing, so he couldn’t get outside, but he could still fall, which was the concern of the nursing home referred to in the article above.
When Dad wandered, sometimes he would have to be lured back to his room by a treat. One time it was a lollipop. Another time it was a piece of chocolate. The small bit of sweets seemed to calm Dad’s wandering spirit, at least for that night.
As the article mentions, the staff provided safe snacks for their diabetic dementia patients as well. I fully support care centers such as these that get creative in trying to accommodate their dementia residents. Offering snacks and the cleanup involved creates a bit more work than just handing out pills, but there are some centers that actually care about quality of life, versus just trying to make patients into “trouble free” zombies.
We need to encourage more of these proactive care centers in our communities.