Category Archives: Awareness & Activism

“Into the Night: Portraits of Life and Death” a fascinating documentary

Leave it to me to find the heartbreaking, gut-wrenching yet powerful documentaries. While films about dying are always an emotional experience for me, I also find them thought-provoking, which is why I keep watching them and sharing with others.

The latest film I watched is titled, “Into the Night: Portraits of Life and Death.” It aired on PBS earlier this year, but I caught it on Netflix. What I liked most about the film was the diverse range of subjects who were interviewed about their perspectives on death. From people of faith to scientists to a former member of an Islamic extremist group, those interviewed were candid about their thoughts on the meaning of life, death and the afterlife.

I loved the imagery captured in the film, such as a son finding an acorn in the pants pocket of his recently deceased father, or a favorite family photograph of a parent and child on the shore of the beach. There was also an interesting discussion of near-death experiences.

One of my favorite death positive advocates, Caitlin Doughty, is also interviewed for the film. A traumatic brush with death as a young child greatly influenced her life.

The most moving segments were with those who were actively dying. Anyone who has spent time with a dying person knows they often offer an insightful take on their imminent demise. Some people fight death until the very end, but others make their peace with death in order to better appreciate the time they have left.

The overall message I took away from the film is that each of our lives are unique stories, and all stories must come to an end eventually.

Watching such a film made me reflect upon my own views of death, as well as those of my parents. My father, a staunch Catholic, had an intense fear of death. Did his dementia offset that fear, or intensify it? There is no way for me to know. My mother, on the other hand, had a more positive end of life view. She thought we “go to a good place, and a right place,” based upon whatever our views are of the afterlife.

For me, I’m more afraid of terminal disease and the dying process than death itself. I dread the idea of pain, misery and loss of self-control. I also dread the loss of mental faculties, but know that is a distinct possibility, as Alzheimer’s is all over my family tree. I admire those that make peace with death, as I think it is the best way to go. At some point, the fight to live is over, but I don’t see that as giving up. I see that as focusing remaining energy on the life you have left.

If you’ve seen the documentary, I’d love to hear your thoughts.

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Alzheimer’s and agitation: How caregivers can cope

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Photo by Gabriella Fabbri/Freeimages

Among the most disturbing and difficult behaviors for caregivers of those with Alzheimer’s to manage is agitation and aggression. Unfortunately, agitation and aggression are quite common symptoms, with almost half of those with Alzheimer’s exhibiting such behaviors, according to a 2008 study.

infographic-4_editedI witnessed the effects my father’s aggressive behavior had on my mother. Even though my dad was slim, when agitated he proved to be far more than my mother could handle. He still could pack a punch, literally, as when he hauled off and hit my mother in the chin with his fist. He claimed he was shadow boxing and she got in the way.

My father was eventually placed in a memory care center, in part due to his aggressive behavior.

Over the years, I’ve learned tips on how to best manage Alzheimer’s agitation and aggression. The key is that not every solution works for every patient; each case is unique. Here are some suggestions I found helpful:

  • Determine if agitation follows a pattern: For some people with Alzheimer’s, they become more agitated at dusk (sundowning) or during specific tasks, like getting a bath or taking medication. (For my dad, it was the bedtime routine.) Consider that the task may be frustrating to complete for the person with Alzheimer’s. If a certain event is a known trigger, it can be helpful in reducing agitation. Distract with an activity to reduce the effects of sundowning. Have an aide help with bathing. Try to disguise medication in food or a smoothie if possible.
  • Create a calm environment: Those with dementia tend to do best in calm environments that reduce the risk of overstimulation. Noise in particular can be overwhelming. Try soothing, familiar music and lights that are bright enough to maintain safety in the home but that don’t create a harsh glare. Limit caffeine if that is determined to increase agitation. Natural remedies, such as soothing teas and herbs may be helpful, but always check with a doctor first.
  • Stay active: For those with Alzheimer’s who are ambulatory, exercise can help reduce aggression and agitation. My dad loved to take long walks, and as his dementia progressed, he spent more time indoors, which was a source of frustration for him and increased his agitation. For those who have difficulty walking, doing simple household tasks like folding towels can be useful in preventing boredom, as can activities like simple jigsaw puzzles and coloring books.
  • Medication: While medication is not effective for some patients, it can be a useful tool when combined with the above suggestions. Consult your loved one’s physician to learn about options. Consider enrolling your loved one in a drug trial if they qualify.

One important factor to keep in mind is that agitation that appears suddenly may be related to a physical ailment your loved one is experiencing but cannot communicate their discomfort. For example, urinary tract infections are common in those with dementia, and can create very uncomfortable symptoms, which can increase agitation. A new medication can also increase aggression. Share any concerns with your loved one’s doctor.

What methods have you found to curb aggression and agitation in those with Alzheimer’s disease?

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Stay or move, that is the question

I was recently introduced to a resourceful website called StayorMove.org. The site focuses on what is are the most crucial questions as we grow older, such as do we stay put in our current homes or do we move on to a different location or live in an assisted living facility?

It’s questions we all should ask ourselves, but many people wait until a health issue makes the decision for them. That’s why I like the approach found on the StayorMove website, which is easy to navigate and uses a series of videos to address the pros and cons of a variety of housing options.

>>READ MORE: Can America afford to age in place?

I also appreciated the fact that growing old in a rural environment was addressed. Those who follow this blog know this is an issue that’s important to me, because my parents’ health care was compromised by living in a small town with limited medical resources. They have a series of videos on the Village movement, which seeks to connect neighbors and volunteers to help elders age in place, while valuing the contributions of elders to the community. I’d love to see this concept expand.

The videos are brief but informative, and hopefully will encourage the “stay or move” conversation to continue. The more people are educated, the better decisions they can make about their own aging and housing choices.

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Fireworks and Sundowning – Not a Happy Fourth of July — The Imperfect Caregiver

A good reminder that not everyone reacts well to fireworks, including people with dementia. (This can also apply to people with autism and pets, among other groups.) Have a safe and happy Fourth of July!

As if sundowning weren’t a challenge for those with dementia and their caregivers we add fireworks to the mix on July 4th each year. A person who once loved fireworks may respond differently now. For someone with dementia, the loud pops and explosions can trigger memories of wartime experiences causing a return or worsening of […]

via Fireworks and Sundowning – Not a Happy Fourth of July — The Imperfect Caregiver

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July 3, 2018 · 7:16 am

Keeping elders safe during heat waves

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While I expect long, hot and humid summers in Atlanta, this spring and beginning of summer has been particularly brutal. Atlanta has already recorded stretches of 90-plus degree weather and the summer season has just started. I was taking a look at the national map and it looks like much of the country is experiencing hot temperatures.

That’s why I thought it was a good time to remind everyone to check in on elder relatives and neighbors more often during periods of extreme heat. As I wrote in this article last year that was posted on The Caregiver Space, seniors can be stingy when it comes to their use of air conditioning. Some of this comes from frugal living during tough economic times, when thing like AC were considered modern luxuries. But in some parts of the country, fans may not be enough to battle the heat. (I learned this the hard way when I stayed at my parents’ condo in New Mexico, which doesn’t have air conditioning, and had to endure 90-degree weather.)

Here are some simple tips that can mean the difference between life and death during the summer months:

  • If your elder loved one lives independently, check in on them more often during heat waves. Ask how they are holding up. Are they using air conditioning or fans?
  • If possible, visit in person, or have a neighbor, caregivers or family friend visit. Make sure elders in the residence aren’t showing any signs of excessive heat exposure. Seniors can be more susceptible to heat stress, according to the CDC.
  • Hydration is key. It was always a struggle to get my mother to drink enough water, and I’ve found this is a common trait among seniors, compared to my generation which seems to carry around a water bottle everywhere.
  • Monitor seniors’ activities to make sure they are not overdoing it when the forecast predicts extreme temperatures. Encourage any physical activity early in the day before the weather heats up.
  • Encourage the use of community cooling centers.

In this day and age, no one should die because of a heat wave. Yet every year, we read of tragic cases, many involving older people. This is one of those situations where it indeed “takes a village” to make sure people stay safe.

What are your tips for staying cool?

 

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AlzAuthors marks 3rd anniversary with book sale and giveaway

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AlzAuthors June book sale.

I’m so excited to announce this book sale and giveaway. The AlzAuthors group is marking its third anniversary! I’m honored to be a part of this group of authors who have written books about Alzheimer’s and dementia.

In addition, June is Alzheimer’s and Brain Awareness month, so it’s a good time to read more on these important topics.

Check out the link below to learn more about the book sale and how you can register to win a collection of books from AlzAuthors, including The Reluctant Caregiver.

via Happy Anniversary AlzAuthors! Alzheimer’s & Brain Awareness Month Book Sale & Giveaway

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Win a FREE trip to the National Caregiving Conference in Chicago

Please share this with any current family caregivers in your life. It is so inspiring to be in a room with fellow caregivers, sharing the ups and downs of the caregiving experience.

The Imperfect Caregiver is honored to be among those who will be presenting at the Third Annual Caregiving Conference in Chicago, November 9th and 10th. For a sneak preview of the presenters Caregiving.com is having a virtual summit May 14 – May 24. Virtual Caregiving Summit Our virtual summit, featuring conversations with our National Caregiving […]

via Win a FREE trip to the National Caregiving Conference in Chicago — The Imperfect Caregiver

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Sharing the voices of Alzheimer’s caregivers

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I’m always open to sharing my caregiving story with individuals and organizations who are championing causes near and dear to my heart. Alzheimer’s is, of course, one of those causes. My father’s brutal experience with the disease prompted me to create The Memories Project blog.

Being Patient is an independent news site dedicated to sharing the latest and most accurate developments in Alzheimer’s and brain health research. It was founded by Deborah Kan, who was an executive producer at the Wall Street Journal before creating the site after her mother’s Alzheimer’s disease diagnosis. I love the idea of serious journalists covering the important developments going on in the world of Alzheimer’s research, so I was happy to help the cause when asked.

I contributed an article about the challenges of rural caregiving for the site’s Voices section, which puts the spotlight on family caregivers. I saw many familiar faces in that section, as the online world of Alzheimer’s caregivers is a tight-knit group. It was good to see my fellow caregivers sharing their unique perspectives. It’s so important for people who are past and present caregivers to tell their story. There are so many areas where caregivers need greater support, and there’s nothing like a heartfelt story to prompt people to take action.

What are your favorite websites for news about Alzheimer’s and caregiver support?

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The cruel progression of Alzheimer’s

While the progression of Alzheimer’s is different for each person, there is a progression, and it’s a heartbreaking one.

On Sunday, 60 Minutes aired its latest installment following the life of Carol Daly and her journey with Alzheimer’s. This year marks 10 years since the show first made contact with Carol and her husband Mike, a former NYPD officer.

It’s gut-wrenching to watch the mental and physical decline of Carol over the years, and how much Mike suffers as a caregiver. But Carol’s story is  important to tell, to help raise awareness of this devastating disease to a mass audience. I am grateful for Mike and Carol for allowing cameras to document the cruelest aspects of Alzheimer’s.

Watch the full 60 Minutes segment

The segment touches upon important topics, such as the high cost of Alzheimer’s caregiving and the lack of financial support, along with the physical and emotional toll dementia caregivers takes on loved ones. You know Alzheimer’s is a beast when the former cop tells the CBS correspondent that caregiving is the toughest job he’s ever had.

The sad truth of course is that there are many Mikes and Carols out there, fighting their own battles with dementia. And that’s why we must do better, as a government and as a society, to help families caring for a loved one with dementia.

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The Reluctant Caregiver wins a gold medal

 

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It may  not be a Pulitzer, but The Reluctant Caregiver earned a gold medal at the 2018 Independent Publisher Awards.

I know my parents would be proud of me, though maybe not so thrilled about what I wrote about them.

The award was a pleasant surprise. I entered a handful of book contests after the publication of The Reluctant Caregiver last year. The Independent Publisher Awards, better knows as the IPPY’s, is well-known, having been around 22 years. The award ceremony will take place on May 29 in New York City and I’m going to fly up for the day to attend the ceremony and hopefully track down a few of my dad’s old haunts.

There are some people who feel these contests are a waste of time and money. I understand the concerns and some are valid, but I choose contests to enter where I would appreciate the prize, even if it isn’t money. For self-published authors like myself, every bit of promotion is worth, ahem, gold.

If you want to learn more about The Reluctant Caregiver, you can visit my website, joyjohnston.com.

 

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