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.
In the post-caregiving phase of life, we can feel pulled in opposite directions. There is often a natural response to retreat from the outer world and try to process all that we’ve been through. As time marches on, we may feel the call to help other caregivers, and that means opening ourselves up to listening to other people’s experiences.
Over the last several years, I have followed many other caregivers via blogs and have been a virtual witness to their highs and lows. I am a member of a caregiver Facebook group and admittedly sometimes I scroll past the heartbreaking posts because there is only so much I can take. I would love to be able to help each and every one, but of course that’s impossible.
Recently, I had the opportunity to attend an in-person support group at Amy’s Place for dementia caregivers, and it was a moving experience. I was there in part to hand out caregiver gift bags that are part of my Respite Care Share project, but my most important action that night was simply listening.
It was disheartening to hear that many of the issues I encountered with my father’s care are still going on today, five years later. Some of the caregiver’s stories brought back painful memories. But there was a power in sharing stories, exchanging tips and advice, and offering moral support.
Family caregivers take on so much, but often find few opportunities to vent. Whether you attend a formal support group or just offer a sympathetic ear to a friend or family member, make an effort to be a listener on a regular basis. It can mean the world of difference to those going through difficult times.
Aging is a bipartisan issue. Whether you’re a Republican, Democrat, Independent, a member of another political party or reject all such labels, all of us will experience the consequences of aging, save for those who meet a premature death. Even those who don’t experience old age themselves may have dealt with aging issues when caring for a loved one.
As Washington deals with political upheaval, the lives of seniors hangs in the balance. The work to address senior and caregiving issues must continue, no matter who resides in the White House. I subscribe to the Alzheimer’s Impact Movement newsletter, and their January update provided a list of Congressional members who play an important role in committees that address Alzheimer’s and aging issues.
In addition to your local representatives, reaching out to the Senate Committee on Aging is a good place to begin. The bipartisan leadership includes:
- Chair: Sen. Susan Collins (R-ME)
- Ranking Member: Sen. Bob Casey (D-PA)
Their contact information can be found on the committee’s website, along with an online submission form.
According to AIM, just this past week, 12 senators sent President Trump a letter to encourage greater investment in Alzheimer’s research and introduced a resolution to make address Alzheimer’s issues an “urgent national priority.”
So call your representatives, email them, write letters, reach out to them on social media … make your concerns known. I do believe personal stories make a difference, and can help fuel greater legislative effort.
I strongly believe that to reach people about an issue they are unfamiliar with, presenting them with experiences from real folks is the way to go. The new PBS documentary, Alzheimer’s: Every Minute Counts, does just that, highlighting the emotional toll the disease takes on caregivers, while also demonstrating the physical and financial consequences associated with the disease.
The documentary doesn’t sugarcoat the situation. It uses the term, “families in crisis” and how our government and society are largely failing to meet their needs. As those of us who have personally been touched by dementia likely know but the general public may be less aware, Alzheimer’s doesn’t discriminate based upon race. The Duartes in Springfield, Missouri are one of the families highlighted in the documentary. Daisy takes care of her mother, Sonia, who was diagnosed with early-onset familial Alzheimer’s at the age of 57.
Families like the Duartes are fighting back, by participating in clinical trials and telling their story to lawmakers. Daisy spoke to members of Congress, who gave a sympathetic ear and related their own tales of family members with Alzheimer’s. Right now, our government is in turmoil, but we must keep the momentum going in the battle against Alzheimer’s and in our campaign to better support caregivers.
The documentary also highlights Rick in Florida, who is overwhelmed by the high cost of residential Alzheimer’s care, when his mother’s condition prevents her from staying in her home. Rick is also saddled with guilt and remorse, because Phyllis is adamant about staying in her own home. This is a heartbreaking decision that so many families face.
I highly recommend this documentary. While it is tough to watch families struggle with this disease, there are people out there dedicating their lives to finding effective treatment and supporting caregivers. Hopefully this film will inspire others to join the fight.
Excellent article that outlines common symptoms of depression that caregivers might experience, and what to do about it. Caregiving can be isolating by its very nature, and loneliness and depression are common, yet many caregivers ignore their own symptoms because they are focused on taking care of others.
Stop Saying I Should Get Over It: Loneliness and Depression in Caregiving
via Loneliness and Depression in Caregiving — The Purple Jacket
To mark MLK Day, I thought it would be appropriate to highlight a gentleman who is truly an inspiration when it comes to raising dementia awareness. His success proves that all of us can make a positive change in our world, if we simply try.
Norman McNamara is a UK resident who was diagnosed with dementia at the age of 50. (Initially misdiagnosed with Alzheimer’s, it was later discovered he has Lewy body dementia.) After being treated rudely by a shopkeeper, he was inspired to raise awareness of dementia in hopes of improving the daily lives of those with dementia in his community. With the help of his wife and community members, the Purple Angel project now has ambassadors and supporters worldwide.
Purple Angel logo, designed by Norman McNamara and caregiver Jane Moore.
If you spend time in the world of dementia online, you have likely seen the Purple Angel logo. You may have seen it in the windows of businesses.What the emblem signifies is that the business owner and staff have read informational material: the “Guide to Understanding Dementia” by McNamara and “What is Dementia” by the Alzheimer’s Society. By raising awareness of dementia and the challenges those with dementia face, business owners can offer more appropriate and compassionate service, helping create a dementia-friendly community.
A short film about McNamara and the Purple Angel project, Norrms, has been released and McNamara has written multiple books on his experiences with dementia.
It’s inspiring to see how one man’s desire to improve his community has sparked a worldwide campaign, raising dementia awareness one neighborhood at a time. The success of grassroots campaigns like this inspire me to continue my work on Respite Care Share. No one person can solve the challenges of dementia and caregiving alone, but each step concerned citizens take can make a big difference.