A tragic case out of Australia demonstrates the need around the globe for police forces to receive training on how to interact with those who have dementia,
Clare Nowland died after a police officer fired a Taser at her when confronting the 95-year-old woman, who had dementia and used a walker, because she was wielding a steak knife, according to The Sydney Morning Herald. She fell, hit her head and died about a week later.
The officer had been called to the care center where Nowland, a great-grandmother, resided because of the incident. According to authorities, Nowland refused commands to drop the weapon and approached them while holding the knife.
While such incidents may be more common in America, this tragic case is a stark reminder that we need better training and guidelines across the globe for law enforcement who engage with those with dementia. In the Nowland case, her refusal to drop the weapon escalated the situation, but we know those with dementia have trouble following directions of any sort. It’s not unheard of for those with dementia to lash out in a violent manner. My father was physically assaulted by a fellow memory care resident after my father became confused, thought he was in a restroom and defecated in the resident’s room. The attack sent him to the hospital.
The officer who fired the Taser at Nowland has been charged with recklessly causing grievous bodily harm, assault occasioning actual bodily harm, and common assault, according to The New York Times.
I had a great time at the Atlanta Writers Conference Book Fair. It’s been awhile since I’ve attended a conference in-person. It’s always inspiring to see so much creativity on display.
To that point, I met several caregivers at the Book Fair who shared their personal caregiving stories with me. If you are on the fence about writing about your caregiving experience, I would encourage you to try, even if it’s in a personal journal and not for public consumption. Doing so can be a cathartic experience. You may find that you do have lessons to share that would benefit other caregivers. If so, there are many self-publishing platforms available, in addition to the traditional publishing route.
Understandably, while you are an active caregiver, you likely will not have time to work on a book project. I scribbled down notes, quotes, scenes, anything that I thought I might want to revisit in written form later. Sometimes having a bit of distance can help in framing an experience in a balanced way, but capturing those visceral images in real-time was important for me. I published The Reluctant Caregiver 2 years after my mother’s death and 6 years after my father’s death. Of course if you’ve been following my blog from the beginning you know I began The Memories Project within weeks after my father’s death. At the time I thought I would mainly be writing about my father’s journey with Alzheimer’s but then my mother fell ill. By the end of my caregiving journey with my parents, I had a variety of experiences and lessons to share.
No doubt you will too.
[To give you inspiration, check out the recording of Poetry for the Dementia Journey, a poetry reading event hosted by AlzAuthors. At about the 37-minute mark, you can hear a poem I shared about my father.]
I will be participating in the Book Fair being hosted at the Atlanta Writers Conference this weekend. The Book Fair is being held Friday, May 5 from 11 a.m. to 6 p.m. I will be there most of the day. My latest title, my award-winning children’s book, Slow Dog, will be featured, but I’ll also have a few copies of my award-winning personal essay collection, The Reluctant Caregiver, and a few copies of Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias, which includes an essay I wrote about my father. All books will be priced at a special book fair discount.
The event will be held at the Westin Atlanta Airport Hotel. Conference details can be found on the Atlanta Writers Club website.
Shortly after my mother’s death, I learned that I had been selected as the recipient for the 2015 Rick Bragg Prize for Nonfiction, in the annual contest hosted by the Atlanta Writers Club. That honor gave me the confidence I needed to keep writing about my caregiving experience and eventually, publish a collection of my personal essays. So the Atlanta Writers Club will always hold a special place in my heart.
If you will be in attendance, please swing by the Book Fair room to say hello!
While I love walking, I don’t enjoy working out on exercise machines and have zero interest in going to a gym. I prefer solo activities so exercise classes are not something that interest me. But I do enjoy gardening and yardwork and have thought to myself, while breathing hard and sweat pouring down my face, that such activities must provide a good workout.
It turns out that science agrees with my theory. According to a recent CNN article, gardening for fitness is set to become a health trend. The article provides an overview of research that supports gardening as an effective fitness activity. Included is a link to a CDC chart that shows the calories burned while doing common physical activities. The CDC says light gardening/yard work burns 330 calories for a 154-pound person. That’s the same amount of calories burned as dancing and golfing.
What I like about yard work is that it’s a full body workout. From raking leaves and hauling heavy leaf bags to the curb, to pulling weeds and digging holes for new plants, you engage a variety of muscles and also get a cardio workout. For me, it’s not only about the physical activity but the satisfaction one feels after planting something or removing weeds. A yard tended to your tastes can be a serene space for reflection.
For caregivers of those with dementia, gardening is something that could be a satisfying outdoor activity for both you and your loved one, at least in the earlier stages of the disease. Yardwork involves the hands and rote activity, something that those with dementia seem to find soothing. As long as those with dementia are physically capable, getting light exercise and spending some time outdoors on a regular basis is recommended. Do be careful to keep an eye on your loved one and keep sharp gardening tools out of their reach.
Whenever I come across realistic, compassionate depictions of the dementia experience I like to share them here. Paul Romero Mendez, the filmmaker behind a short film named “Ruth” reached out to me recently. His moving film was released in 2021. The film depicts a woman with dementia who is lost in her own home. Highlighting this experience is very important, because while remaining in the family home can offer those with dementia the comfort of familiarity, the disease may strip away the very memories that makes the home feel meaningful and safe.
Many of us who have had cared for loved ones with dementia have had to confront the dreaded request to “go home.” But home may not be what you think. If your loved one is in a memory care center, maybe it is their last home, but it could be their childhood home. Time doesn’t necessarily move in a linear fashion for those with dementia. One minute they may be back in their childhood, the next a young adult, and the next to the current time. My father often asked to go home when he was in the memory care center, but he also talked about going home to Northern Ireland to be with his sisters. So I don’t believe home was the condo in Ruidoso where my parents retired. Home may not be a fixed place in the way we think of it, but a feeling of love and contentment.
The film was shot in a single take, so the audience can understand better the swirling cloud of confusion that those with dementia may contend with on a daily basis. It’s a powerful depiction, filmed with compassion. You can watch the film below. (This is a different short film from the one I posted about in January, which is also called Ruth.)
Every night I wind down by playing two games on my tablet: a crossword and a Jumble word puzzle. I’ve always enjoyed word puzzles. I inherited my love of the Jumble puzzles from my mother, who was a devoted player. One of the ways we bonded as she recovered from cancer surgery was working on Jumble puzzles together. My dad was an avid reader, but his love of words didn’t extend to games. It was particularly cruel when Alzheimer’s took away his favorite hobby of reading.
There are many apps and articles that promote “brain games” as a way to reduce the risk of Alzheimer’s and other dementias. While proponents of such games are enthusiastic about their potential in supporting cognitive health, the research so far is mixed when it comes to benefits.
One study that involved people diagnosed with mild cognitive impairment found that crosswords helped support cognitive health more than other games, though the positive results were not dramatic.
There’s no harm in playing such games if it brings you comfort. I do notice that if I’m tired or not feeling well, I struggle with completing the puzzles as fast as I normally do. I like to challenge myself to complete the crosswords as fast as possible. For me, this means not stopping to ponder a clue that I’m stuck on; instead I keep going and complete as many other words as possible before coming back to the ones that stumped me.
While such games may not offer protective benefits against Alzheimer’s, we do know that doctors use a series of tests which could be considered game-like to help diagnose someone with the disease, such as word memory exercises. I’ve participated in a study which has me complete a series of games along with a cognitive questionnaire a few times per year. Doing word games as part of your daily routine could help you spot a decline in your cognitive abilities earlier than you might have noticed otherwise.
Dementia caregivers who are juggling careers and care duties will appreciate how director Alex Berg depicted the caregiving experience with empathy and accuracy in his short film, “Ruth.” The film was released in 2022 but is receiving renewed interest due to an Alzheimer’s Association interview with the director that was published this month.
In just 9 minutes, “Ruth” beautifully depicts the frustrations and joy of a mother with dementia and her middle-aged daughter who is trying to balance career demands with caregiving. Berg told the Alzheimer’s Association that his grandfather was an inspiration for the project. The confusion and repetition of questions is something many dementia family caregivers will relate to. The frustration that bubbles over for the daughter is also familiar. “I wanted the daughter-caregiver in the film to be just as central as the mother character, going through personal challenges of her own, ones that don’t go away just because she is a caregiver,” Berg said.
The acting and direction is heartbreakingly beautiful. Family caregivers will finally feel seen after viewing “Ruth.”
In a move that family caregivers feel is long overdue, the federal government is launching an investigation into the inappropriate use of antipsychotic drugs in nursing homes. Specifically, the government will be looking at the suspicious rise in schizophrenia cases and determine if the spike is being used as a workaround to use antipsychotic drugs to sedate difficult patients and make them more manageable for staff.
This is not a new issue, especially for family caregivers of those with dementia. I’ve written about it multiple times on this blog in relation to my father’s experience. My father was given risperidone, a drug used to treat schizophrenia and bipolar disease, at the memory care facility he resided in during the last year of his life. The doctor didn’t deny when I confronted him about the drug and how it was used to make dementia patients zombies and more compliant for staff.
After my father’s death, I reported the issue to the appropriate state agency, but never received a response. The federal government claimed in 2013 that antipsychotic use in nursing homes was on the decline. That remains true but only for the population not diagnosed with schizophrenia. There is also a troubling racial disparity, with Black nursing home residents being diagnosed with schizophrenia at higher rates than their white counterparts.
CMS will conduct audits and nursing homes showing a pattern of diagnosing schizophrenia incorrectly may see their public ratings impacted. CMS will monitor the nursing homes not in compliance to make sure corrections are implemented. It’s not known at this time if fines will be implemented for those nursing homes who continue to be out of compliance. Also, patients’ families will not be informed if their loved one was incorrectly diagnosed. Make sure to request a list of the drugs your loved one has been prescribed and question any medications that don’t seem appropriate.
Highlighting the challenges that come with caring for a family member in which you have a difficult relationship dynamic is an issue that is important to me. I discuss my own challenges when caring for my mother in my book, The Reluctant Caregiver.
Lori Grinker has created a moving, powerful photo essay, “All the Little Things,” which is about caring for her mother Audrey. The mother and daughter faced a trifecta of challenges: Audrey was already dealing with dementia when she was diagnosed with cancer at the beginning of the COVID-19 pandemic. Grinker and her mother had always had a strained relationship, but the pandemic delayed a move into an assisted living facility, so mother and daughter lived together for three months. Grinker not only captures images of her mother, but of objects in her mother’s apartment. Those objects sparked memories and discussions that allowed the pair to open up the lines of communication more.
One of the objects that jumped out at me was the worn baking sheet. I remember my mother having a similar favorite baking sheet that she never wanted to discard no matter how discolored it became.
Life isn’t a Hallmark movie, so one shouldn’t expect an “all is forgiven” ending. Grinker told NPR that she and her mother were able to find some love for each other and most importantly, Grinker says she no longer harbors anger for her mother’s actions. She told NPR even if she cannot forgive her mother for some things, she now understands some of her mother’s life choices better.
It has been 11 years since my father died. The weather is similar as it was on that day, a chilly rain, which in turn is typical Irish weather and reminds me of my father’s homeland.
The moment I received the call from my mother that my father was gone is forever embedded in my memory. The death of a parent is one of those world-stopping moments. It’s not something you get over, but the tide of life will continue to push you forward.
Witnessing the devastation of Alzheimer’s disease first-hand in my family prompted me to become an advocate for finding effective treatments and for better support of family caregivers. I join many others in those causes and I’m grateful for the connections I’ve made through the years.
Sharing your dementia caregiving stories is important and I hope you will continue to do so, whether it’s through a blog or other outlet. I know it’s not always easy to share such personal details, but putting a real face on a disease that has long been kept behind closed doors is essential in raising awareness and building public support for better treatments and services.
My father mattered and so do your loved ones. When those difficult anniversaries come, embrace the good memories and use the tough ones to inspire you to push for change.