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.
I haven’t had a chance to watch the PBS Frontline special called, “Life and Death in Assisted Living” yet, but I did read the online report. My interest was certainly piqued when I discovered that Emeritus was the assisted living company being investigated. My father spent the last year of his life in an Emeritus facility. I’ve written many posts about the good and bad experiences there. The PBS report takes a long and hard look about how Emeritus seems to be more interested in raking in cash that taking good care of patients. The accusations made range from hard-selling (fill those beds!) to employing woefully unqualified people to take care of dementia patients and not filing incident reports as required by law. To be fair, I would think that most of the corporations running senior residential facilities have aggressive financial goals, so Emeritus is probably not any better or worse than most of the other companies.
Are assisted living companies putting greed over good care?
I know that if my mom had understood Dad was going to be an hour-and-a-half away from her, she would not have agreed to move him to the Emeritus property but somehow, that seemed to happen overnight. Mom said it was without her permission, but having asked around and now seeing how profit-focused Emeritus seems to be, I think it was just a hard sell tactic and Mom ended up signing a paper that allowed Dad to be moved. The rate increased multiple times in the 10 months he was there. I remember talking to the admissions coordinator when we were just checking out facilities and she told me that Dad’s monthly checks should cover “most” of the costs. Not even close. By the end, we were paying over $4000 a month and Mom had just received a notice that another big rate hike was coming right before she transferred him closer to home.
That rate didn’t include any medications, which racked up a bill totaling several thousands of dollars that we just finished paying off earlier this year. I did report the facility to a state board because I felt they overmedicated my father and gave him medications that were under scrutiny for being dangerous to give to elderly patients. I never heard any followup from my complaint.
The PBS report also talks about the numerous patient falls due to staff not adequately supervising patients. My father fell several times while at the Emeritus facility. The staff called us each time there was an incident (that we know of) and took him to the hospital when necessary. Even with adequate staff, preventing a fall can be difficult with dementia patients. I feel that the Emeritus facility that my dad was at followed the rules in this area, though I did wonder if there was a better solution than placing my dad’s mattress on the floor after he fell out of bed multiple times.
I’ve read both good experiences and horror stories when it comes to senior residential facilities from the amazing bloggers I follow. If you have the chance to catch the PBS special, let me know what you think. Can corporate entities balance making a decent profit with providing excellent care for our most vulnerable citizens?
I finally had he chance to see You’re Looking at Me Like I Live Here and I Don’t, a PBS documentary by Scott Kirschenbaum. It’s the first documentary filmed completely from the perspective of a person with Alzheimer’s. It’s a powerful, heartbreaking film and reminded me so much of my dad’s experience in a care facility. It’s highly recommended viewing.
Like Lee, who tries to relate the fragments of her life that are forever escaping her, my dad resided in the “memory unit” of an assisted living facility for the last year of his life. He resided with a small group of other residents who suffered from dementia, in a secure wing of the facility. As the documentary shows, Alzheimer’s affects people of all kinds, and having a group of strangers who are suffering from a mental condition live with one another is a challenge. My dad, like Lee, kept mainly to himself, though he did have a roommate he got along with initially. The two would talk about “breaking out” and heading to the Midwest. Like Lee, Dad would set off the alarm on the security door. He knew he wanted out of the facility, but he did not remember where home was.
Dad and I at the assisted living facility, March 2011.
My visits to the nursing home where my dad lived were similar to what is portrayed in the documentary. The staff try to make residents comfortable, but the disease is not easy to manage. Available medications can put residents in a constant slumber, but without some medications, residents might be a danger to themselves or others. Yet there are also moments of humor and heartbreak, which are so tenderly depicted in the documentary. This is life in the dementia ward.
And just as I wondered about all of the other residents at the care center my dad was living at, I wondered about the other residents at the facility depicted in the documentary. Who were these people before Alzheimer’s took over their lives? What are their stories? I hope their families have recorded their memories in their own special way so their stories are not forgotten.