Joy Johnston is an experienced digital journalist and award-winning author. The Reluctant Caregiver, her collection of essays on caregiving, received a gold medal at the 2018 Independent Publisher Book Awards. She received the 2015 Rick Bragg Prize for Nonfiction from the Atlanta Writers Club. Her father’s death from Alzheimer’s complications in 2011 inspired “The Memories Project” blog, which was featured on NPR. She is an Alzheimer's awareness and caregiver advocate.
Have to say I agree with this perspective wholeheartedly. As the author of The Reluctant Caregiver, I have empathy for those of us who often find it difficult to be Miss Mary Sunshine all of the time. Sometimes life just sucks. People mean well but the best gift you can offer in such situations is simply a sympathetic ear.
I was recently introduced to the term “toxic positivity.” I instantly knew what the term referred to, and I could relate. I see it on social media….Positive vibes only…Think happy thoughts…There’s always a silver lining…It’s a great day to have a great day. And I can remember times when I was struggling and someone shot […]
This week marked the fourth anniversary of my mother’s death. I’ve hit that mark where it’s hard for me to believe that it was only four years ago. It seems like a lifetime ago.
But the towering water oak tree in my front yard serves as a sturdy reminder. It has been four years ago since the last time I had it trimmed. The reason why I remember the date of such a mundane task is because it was the day that I realized Mom was dying and that I needed to be with her. I remember the chaos of that day, with Mom getting admitted to the ER again for uncontrollable pain. I was trying to field phone calls with the roaring machinery going full-throttle outside. There was an issue with a car parked on the street and I was being asked to assist. I remember wanting to scream, “I don’t care about the damn car. My mother is dying!”
I recently had the tree pruned again, and the foreman proposed May 21, the day of my mother’s death. Somehow I thought it was appropriate. The tree may very well outlive me. It grows, it sheds its leaves in the fall, occasionally branches drop, and then it is tended to and left naked with knots. It’s akin to how time alters the grief process. One is left raw with some hardened spots, but life continues to grow.
You may never be the same after the death of a parent, but life does go on.
The world lost one of its great comedic talents with the passing of Tim Conway this week. My mom loved watching him on The Carol Burnett Show, and I watched episodes with her as a pre-teen and teenager.
One interesting note was that it was reported last year that Conway had dementia. His daughter had mentioned the diagnosis in court filings. But when his obituary was filed, it made note of the fact that he did not have dementia or Alzheimer’s, but instead had excess fluid on the brain.
I was pleasantly surprised to see the outpouring of condolences from a variety of generations. I was unaware of his later voiceover work for animated productions until I checked out his IMDB profile.
We could all use a little more innocent humor nowadays, with the world seemingly so full of hate and division. While one of Conway’s best-known skits (and funniest) is “The Dentist,” I stumbled upon “Dog’s Life” and thought it was hilarious. Conway became his characters, even when they were non-human. His attention to detail elevated his comedic ability to a whole new level. Enjoy, and share with anyone who needs a mood lifter this week.
The week of May 6-May 12 is National Nurses Week. Caregivers of loved ones with chronic conditions resulting in frequent hospital stays get to know the profession and its members quite well.
Being a nurse means often seeing people at their worst: in pain, with mental confusion, combative or frightened. Nurses who treat those with dementia know an extra level of care and patience is required.
Nurses sometimes get labeled as superheroes but they are human, with their own families and struggles. But when they come into work, they attempt to put their own troubles aside to make someone else feel better. It’s a true act of giving.
I am grateful for the nurses who cared for my father and mother during their hospitalizations. One particular incident that stands out in my mind were the nurses at Presbyterian Hospital in Albuquerque. When they found out that it was my parents’ 40th wedding anniversary, they brought my mother a slice of cake while we were in the ICU room with my father who was in a medically-induced coma. Those busy nurses didn’t have to take the time to make that sweet gesture, but they did. I’m forever grateful.
If you know a nurse who has touched your family’s life in a positive way, reach out this week to let them know.
Respite care is an issue I care about passionately, prompting me to launch Respite Care Share a few years ago. This guide offers an excellent overview about what respite care benefits Medicare covers.
When it comes to our loved ones that may be living with health conditions that hinder their ability to perform everyday functions, we want to provide them with the best care. Statistics show that often, it is a family member that takes on this role as a full-time caregiver. Being a caregiver is one of […]
I saw an excellent movie recently that I wanted to share with others who are or have been dementia caregivers. The movie is called, “What They Had,” and it has a great cast, starring Blythe Danner, Hilary Swank, Robert Forster and Michael Shannon. The film has a fairly simple plot: matriarch Ruth’s dementia is getting progressively worse, and the family is drawn together to figure out the next steps.
Those of us who have been dementia caregivers know what’s coming next, to a certain extent. The family’s internal dynamics are stretched to their breaking points as they each approach the “solution” to caring for the woman they love who is losing her mind and memories of them.
What is remarkable about the film is how realistically it depicts the challenges of a family grappling with Alzheimer’s. First-time director Elizabeth Chomko, whose grandmother was diagnosed with Alzheimer’s, captures the raw and complex emotions perfectly. The movie is uncomfortable to watch in a good way, in that the plot, dialogue and acting is so realistic that you feel like you are eavesdropping into a family’s nightmare.
Watch the trailer:
I related quite a bit to the character of Nick, who is the son and brother. He’s the hands-on sibling, because he lives near the parents in Chicago, while Swank’s character Bridget is the sister who moved away to California. Nick has understandably built up some resentment and even though he comes across as pessimistic and critical, he cares deeply and understands the mother’s condition in a more realistic way than the rest of the family. I related so much to Nick’s frustration with the rest of the family who were overly optimistic or avoiding the tough decisions, as I dealt with that with my mother when making medical decisions for my father.
Bridget’s response to being thrown into a family crisis prompts her to question everything about her life, including her marriage. Danner plays the character of Ruth with heartbreaking tenderness, though there are moments of humor as well. And Forster, Ruth’s husband and primary caregiver, demonstrates a loving resilience underneath his gruff, practical exterior.
Both Danner and Swank have experienced real-life caregiving, which I think brought an extra layer of realism to their portrayals.
The film is available on video-on-demand services. (I watched it on Vudu.) It does contain a fair amount of profanity, but it seemed to be a natural fit for the characters’ personalities. If you’ve seen the movie, I’d love to know what you thought about it.
It’s heartbreaking to hear stories where elder loved ones are scammed out of thousands of dollars. These criminals can be found all over the world, only needing a list of phone numbers or email addresses to find their next victim.
A new study has found that those who are more prone to becoming scam victims may be at greater risk of dementia. In today’s world, it’s not just phone scams that one has to worry about, but online scams as well.
My father was not a phone person, but he did send money to a variety of religious organizations. They were supposed to be representing Catholic churches or charities, and he would get a small token or prayer request in exchange for whatever he sent. It may have been totally legitimate, but after he was gone, I found hundreds of pieces of correspondence from these groups. I wonder if he gave more as his dementia progressed.
My mother was the phone person in our family. She didn’t have dementia but she did have a quality that made her potentially susceptible to scammers: loneliness. She loved to talk on the phone to people, whether she knew them or not! They would be her friend by the end of the conversation. I remember getting upset with my mother when she told a telemarketer that she had won the lottery. Why would you share personal financial information with a stranger? My mom’s response was that the telemarketer had said she was a “nice lady.” Sigh. Fortunately, nothing came of the incident, and to be fair to my mother, she was aware of the scams that were going around targeting seniors.
Credit.com has a nice resource which breaks down the most common online scams and offers tips to help seniors avoid becoming a victim. Monitoring your elder loved one’s financial statements is key. If your older relatives enjoy going online, there are a set of simple steps you can take to provide them a secure experience. Staying vigilant is the best way to combat such criminal activity.
This blog post by Lauren Dykovitz is so beautiful and poignant. It really resonated with me. I think other “Alzheimer’s daughters” will appreciate it as well.
I see you, Alzheimer’s Daughter, trying to smile through the pain. I know how much it hurts. You feel as if both of your parents have just disappeared, vanished into some other world. Alzheimer’s World. They are gone forever. Only they’re not really gone. They’re still alive and, maybe, they live just a few miles […]
The Alzheimer’s Association released its 2019 Alzheimer’s Disease Facts and Figures report, and the statistics are sobering. Almost 6 million Americans are living with Alzheimer’s disease, and it is the sixth-leading cause of death in the U.S.
On the caregiving front, more than 16 million Americans are providing unpaid care for people with Alzheimer’s and other dementias. The value of their work is approximately $234 billion.
While the numbers are grim, the 2019 report makes crystal clear that we need bipartisan support at the federal level in addressing what is a health care crisis. Alzheimer’s disease is so costly, yet lags in research funds. Alzheimer’s caregivers need far greater support, both financially and in respite care.
I’m excited to share my latest book, CBD for Caregivers. This brief but informative e-book will shed light on what is one of the top health trends of 2019: CBD (cannabidiol.) Hemp-derived CBD is being soil in oil-based tinctures, edibles, topicals and infused into tea and coffee. How can this potentially beneficial supplement help caregivers?
I look beyond the hype and take you on the journey of an average middle-aged woman with no marijuana experience who explores CBD with an open mind and a healthy dose of skepticism. What I found is that CBD holds promise as a healthier way to deal with stress and pain. There are no miracle drugs and some of the more fantastical claims are indeed bunk. But I would also challenge those who argue that positive CBD claims are all just a giant placebo effect.
In addition to an overview of what CBD is and how it may help caregivers, the e-book contains a roundup of my CBD product reviews that are a popular feature on my website, CBDforCaregivers.com.
For my loyal blog followers, you can download CBD for Caregivers for free for a limited time. I would kindly ask that you leave a review at your favorite digital retailer if you grab a free copy. The book is available at the following digital book retailers. There was a hiccup with Amazon but hopefully it will be available via Kindle soon as well.
![Pageflex Persona [document: PRS0000038_00069]](https://memoriesproject.files.wordpress.com/2014/02/reluctant-caregiver-cover.jpg)
The Memories Project 