Category Archives: Awareness & Activism

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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Dementia communication tips

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I love the approach to this list, written by Dr. Elaine Eshbaugh who runs the blog, “Welcome to Dementialand.” It’s not necessarily for those of us who have been through the challenges of being a caregiver for someone with dementia. These simple, smart tips are for “everyone else.” Relatives, friends, nursing home staff and just about everyone could benefit from learning how to better communicate with those with dementia.

Read the list: Tips on Communicating in Dementialand

One of my favorite tips is: “Minimize competing stimuli.” Those with Alzheimer’s and other forms of dementia can be easily overwhelmed. It made me think back to my father visiting me at the casino resort, and how I instantly realized what a poor choice that was, as I explain in my book, The Reluctant Caregiver.

“Sensory-friendly” is a concept that I see being implemented for those with autism. I think similar steps can be taken to make things “dementia-friendly.”

via Tips on Communicating in Dementialand

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A new caregiving podcast

I love to promote those helping to spread awareness of the triumphs and challenges of family caregiving.

A new podcast, engAGING Conversations, launched this month. Sheryl Smith, RN, BSN, M.Ed Certified Health Coach, has created this podcast to cover a wide variety of caregiving topics. I recently had a conversation with Sheryl, in which we discuss my book, The Reluctant Caregiver. The episode is scheduled to air March 20.

On Google Play (requires login)

On iTunes (requires free iTunes software)

engaging conversations

Smith has the experience of being a professional caregiver as a nurse and caring for her parents as they aged. Her insight is so valuable to family caregivers. Smith also hopes to carry forward the conversation about end-of-life planning, which is a topic near and dear to my heart.

The first three episodes are posted on Sheryl’s website, and you can subscribe to the podcast via your favorite provider.

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How can we prevent deadly encounters between those with dementia and law enforcement?

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As the nation grapples with another school shooting by another person with mental illness, I can’t help but think about those with dementia who exhibit violent behavior.

It’s not something a lot of people want to think about or discuss. But the truth is that those with Alzheimer’s and other dementias can become violent. My own father became physically violent towards my mother as he sank into the middle stages of Alzheimer’s.

I can only imagine what would have transpired if my mother had called the police the night that my father struck her in the jaw. His flashes of anger and paranoia were at the peak at this time. I can see him lashing out at authority. I can see him ending up like Stanley Downen.

Downen was 77 and was in the latter stages of Alzheimer’s, Reuters reported. Police were called to the nursing home he resided at because of a wandering resident. Downen had slipped outside of the facility’s gate, and staff members were trying to encourage him back in.

Downen, a former iron worker who had served in the Navy, was angry and cursing.  He said he wanted to go home. He grabbed rocks from the ground, and threatened to throw them. As the officers approached, one was concerned enough about the threat that he decided to use his Taser on Downen. The older man went down quickly,  his head striking the pavement. He was taken to the hospital and never left. He died three weeks later.

There have been warnings about using Tasers and similar products on the elder population, as they are associated with a higher risk of injury and death, but the officer involved in this case claimed he never heard about the warnings. A lawsuit filed by family against the city and state was settled in the family’s favor.

It’s situations like these that are so difficult to manage. Mental illness by its vary nature is unpredictable and can unleash violent behavior. How do we show compassion for those with mental illness while protecting innocent lives? At what point is force necessary? And perhaps most importantly, how do we prevent these situations from occurring?

In the case of Mr. Downen, better security protocols and perhaps more staffing could have prevented his escape from the nursing home. Better training and established protocols could have determined a different course of action once the police were involved.

One thing seems clear to me: whether you are 18 or 80, we have to figure out a better was to manage mental illness in this country. We either bury our heads in the sand in denial or we overmedicate people into zombies. We need to open an honest dialogue on the subject and then take concrete actions based upon those discussions.

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