March 2, 2014 · 12:34 pm

The dreaded conversation

UsAgainstAlzheimer’s recently sent out an email about planning for your parents’ future, if/when they become incapacitated in body or mind and are unable to care for themselves anymore. The message stressed how important it is to have “the conversation” where you discuss these difficult topics with your family and develop a plan just in case it is ever needed. Of course, I think this is the smart and right thing to do and would encourage all families to do this.

But from my personal experience, easier said than done. As I’ve mentioned before on this blog, my dad had a fear of death so he never wanted to broach the subjects of becoming ill and dying. My mom, ever the chipper one, would respond to my encouragement to fill out the will paperwork by saying, “Well, you already act like we have one foot in the grave. We’re not dead yet!”

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I’m hoping that with the baby boomers, such discussions won’t be viewed in such a taboo fashion. And as long as Generation X and younger can fill out a form online, they’ll probably be willing to do it. While the younger generations certainly have earned some fair criticism about their navel-gazing tendencies, in this case, it is a good thing to sit down and spell out exactly how you want these aspects of your life to be. The more introspective, the better!

For those of us who have family members with dementia who did not plan ahead, you often feel like you are stumbling through the dark, hoping you are doing the right thing, but the uncertainty can haunt you in the middle of the night. My dad was afraid of dying, but if he could have understood what his sad reality was going to be with Alzheimer’s, would he have been more inclined to be a DNR? I’m not sure, but I am plagued by what the doctor on duty at the nursing home said the day Dad died. The DNR instructions from the hospital did not make it to the new facility, and the doctor said he thinks the EMS worker broke Dad’s ribs when performing CPR on him. That should not have happened. We as a family should have triple-checked about the DNR order. That’s why it is so vital to discuss these things before an emergency arises, because no one is in a proper frame of mind at that point.

What tactics have worked in your family to discuss these sensitive end-of-life topics?

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February 24, 2014 · 3:54 pm

My story will appear in “Chicken Soup for the Soul Living with Alzheimer’s & Other Dementias”

I am very excited to announce that a story that I wrote about my father, called “French Toast,” will appear in a special edition of the popular “Chicken Soup for the Soul” series. This edition features stories about living with Alzheimer’s and other dementias and is a joint project with the Alzheimer’s Association. All royalties from this special edition will go directly to the Alzheimer’s Association. The book will be released on April 22, 2014.

CSS Living with Alzheimer's & Other Dementias

I am thrilled to be a part of this upcoming book, especially for a publisher as popular and well-respected as the “Chicken Soup for the Soul” folks. From thousands of submissions, 101 stories were chosen to appear in the book. I look forward to reading all of the inspirational stories.

If you’re wondering how I came about submitting my story, it was really just by chance. I was doing my daily “looking for paid writing gigs” web search and was on the Work-at-Home Moms website. Now I’m not a mom (unless you count the pets) but I find that their website sometimes posts opportunities I don’t see elsewhere. It was on their website that I saw the “Chicken Soup for the Soul” callout for Alzheimer’s and dementia stories. I said to myself, “Why not?” I submitted two stories: a depressing one and a funny one. The funny one was accepted. 🙂

One of the main goals I had in mind when starting The Memories Project blog was to raise awareness, not just for Alzheimer’s but for family caregivers as well. I’ve virtually met so many wonderful people through my modest but loyal following. The dialogue we have has educated and inspired me and lifted my spirits. Yet I know so many others are struggling silently and I hope by being able to get out the word on a larger platform, more people can get the support they need.

To prepare for the upcoming release of the book, I’ve added a couple of pages to my blog: media appearances and publishing credits. If you or someone you know would be interested in a copy of the book, an interview or a guest blog post, feel free to contact me directly at joyjohnston.writer@gmail.com.

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February 18, 2014 · 5:52 pm

Caregiving like a labyrinth

I was reading an interview with Gail Sheehy in Today’s Caregiver magazine. In it, she talks about the caregiving journey being akin to navigating a labyrinth. When you make your way through a labyrinth, you must follow the path as it is presented to you, even it takes you forward and then suddenly reverses, taking you back several paces before veering off again. Sheehy talks about requiring patience and faith to reach the center. This can be spiritual faith or faith in nature, yourself, etc. Once you reach the center, think about the physical state of your loved one. Are they on the mend or are they declining? If it is the latter, Sheehy states that you need to accept that you and the loved one you are caring for are on two separate journeys. Their journey through the labyrinth will result in their departing this world soon, where as you must find the path back to your life. Sheehy warns of not sacrificing two lives for one, as she has seen many caregivers do who fail to take care of themselves during their caregiving period.

labyrinth

To me, the concept of a labyrinth perfectly describes the caregiving journey. We move forward, then a setback moves us backwards. We learn more the more time we spend on the caregiving journey. There are frustrations along with successful moves. Eventually, we all reach the same path that includes our exit from this world, but as caregivers we have to recognize that we can only go so far down that path with our loved ones.

Sheehy also discusses the crisis points that caregivers experience and how they can better manage these stages. Sheehy stresses that caregiving should never be a solitary journey; to protect your own health you need to form a circle of care to support you. Easier said than done for many of us, but I think Sheehy’s ideas should receive widespread adoption and community resources should be directed towards these concepts.

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February 11, 2014 · 4:08 pm

Sharing the Story of Dementia through Pictures

You might learn some new factoids from this infographic, even if you think you are a dementia expert.

Kay H. Bransford's avatarDealing with Dementia

I was recently sent a link to this “infographic” that sums up the large topic of dementia using pictures.

First, I want to reiterate that dementia is the umbrella term used to describe a variety of disease states — from Alzheimer’s to Vascular and even a symptom in some patients with Parkinson’s.

I made the request that they find a way to show the growth of Dementia — I feel as we are getting more education on the symptoms — many more families will find they are starting their journey with a loved one into the land of dementia. Shared.

Thank you to mba healthcare management and Riley for sharing this with me.

Dementia
Source: MBA-Healthcare-Management.com

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February 4, 2014 · 7:05 pm

Disasters and random acts of kindness

You probably heard about the snowstorm that struck Atlanta, Georgia last week and shut down the city. Many people ended up being stuck on the highway, miles from home. Children were stranded on school buses or at schools, separated from their parents. Elderly people and those with chronic diseases were in need of medications and care. Even though we all knew it was a temporary situation, with temperatures rising well above freezing by the end of the week, during that initial 24-hour period, it gave all of us here a good taste of how people react in dire circumstances.

I was pleasantly surprised to see, that even in this age of selfishness, there were a lot of examples of people going out their way to help those in need. While social media is often seen as a vapid waste of time, people took to online networks like Facebook and Twitter to learn where there loved ones were and to help those in need. People who needed medical attention were taken to hospitals, and a stranded pregnant woman and young child were provided with shelter. Teachers stayed with their stranded students overnight instead of with their own families. One man walked six miles during the snowstorm just so he could spend the night with his daughter, who was stranded at her elementary school.

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Sure, there was the guy who drove a fake tow truck to try and steal abandoned cars off the road, but he was quickly caught. 🙂

It made me think about the random acts of kindness bestowed on my family during my dad’s illness and when I was my mom’s caregiver. The little things that made such a difference, like the shuttle driver that bought my mom flowers while we were viewing my dad’s body at the funeral home. That same shuttle driver risked her life to get me to the airport right after a brutal snowstorm so I could try to make it home for Christmas, then came back to pick me up when the airport shut down and drove me to a hotel. I sent her a thank you card but there really is no way to repay these acts of kindness. There was another shuttle driver who picked me up from the hospital in his personal car after he had completed a long day at work, when I was stranded at the hospital with mom and literally had no other way to get home.

When you are a caregiver, these simple acts of kindness make such a difference, whether you find yourself dealing with a disaster on a personal or larger scale. Bless all of those people who open their hearts and help those in need.

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January 29, 2014 · 9:06 am

I Think I’m Going to Cry

The sentiments and observations in this post are so true. My mom would snap at my dad when dementia first reared its ugly head, then feel terrible about it later. Of course, as caregivers, we all struggle with guilt. That’s why offering support to family caregivers is so important.

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January 21, 2014 · 7:31 pm

Other people’s memories: “Half a Life”

A memoir that relies heavily upon the memories of a single life-changing event is “Half a Life” by Darin Strauss. I’m sure you’ve read many stories about a tragic car accident that claims the life of an innocent person. While often alcohol and drugs are involved, sometimes these events are truly accidents, with no direct fault assigned to the person behind the wheel. Have you ever wondered what happens to these people? To know, even if you weren’t directly at fault, that your actions claimed the life of another human being … how would you manage to go on with your life carrying that memory? Well, author Darin Strauss knows, because he was the person behind the wheel of the car that struck and killed a classmate who was riding a bicycle.

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Strauss had just turned 18, and perhaps the inattention and inexperience of a young driver played roles in the accident. Still, no charges were ever filed and his community, even the deceased classmate’s parents seemed to forgive Strauss. But then the grieving parents decided to sue Strauss for millions of dollars, and the case dragged on for several years, thwarting Strauss from moving on with his life. Even though he saw a therapist, he never worked through his guilt and other feelings surrounding the tragedy. He did what many of us try to do during difficult situations: he put a smile on his face and carried on, suppressing his emotions.

The memory of the accident haunts all facets of his life, from work to friendships to the dating scene. Not only do the lingering memories of the accident have a negative impact on his emotional well-being, they physically make him ill and he has to have stomach surgery before turning 30.

Finally, as he marries and becomes a father, he decides to engage in the best therapy of all for a writer: he would write about the experience in a memoir. The result is a powerful work, and a lesson for all of us trying to process difficult memories. I was very moved by this book and highly recommend it.

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January 15, 2014 · 6:52 pm

Other people’s memories: “The Glass Castle”

“The Glass Castle” is one of those memoirs that really lives up to all of the hype. The writing manages to be both emotionally devastating and darkly humorous, not an easy task to pull off. If you have not read the book yet, I highly recommend it. Author Jeannette Walls recounts her most unusual childhood and the impact that those experiences have had on her adult life. There is no doubt that she and her siblings experienced abuse and neglect at the hands of their parents who should never have been parents. But there are moments of genuine love buried in the narrative that have you pulling for a happy ending for this ragtag family.

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There are many memories that Jeannette Walls describes in exquisite detail that have stuck with me even years after reading the book. But as far as memoirs go, I think Jeannette Walls has earned the title for best first line ever:

I was sitting in a taxi, wondering if I had overdressed for the evening, when I looked out the window and saw Mom rooting through a Dumpster.

Wow. Just wow. How can you not keep reading with an opening like that?

That single memory really sums up the book quite well. Despite a nomadic, chaotic upbringing, the author has found some measure of success in the big city. Yet her parents, often stubbornly refusing help, continue to pop up in her life at the most inconvenient of times, reminding her of the damaged stock she came from. The author bravely reveals so much of herself through writing about the painful memories of her family’s struggles. It is not a book for the faint-hearted, but still, I think one of the lessons to be learned from the book is that there are rewarding moments to be found even in the direst of memories.

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January 10, 2014 · 12:23 pm

A lesson on perception

I will return to this month’s theme of exploring the memories of others found in my favorite memoirs in my next post. I just have to share an experience that I had this week, because I think it can be useful to all of us in a caregiver role. Most family caregivers have no formal training before they jump right in as a hands-on caregiver. We can’t expect perfection, but I think we tend to beat ourselves up when we shouldn’t. Because caregiving is such an emotionally sensitive role, it is easy to let one small failure ruin one’s day or trigger a major guilt trip.

Stop beating yourself up!

Stop beating yourself up!

As I mentioned in an earlier post, I had a job interview this week. Despite my confidence in my work abilities, my introverted personality shudders at the thought of talking about myself for an hour in a room full of strangers. No matter how many tips I read and how much I practice and prepare, a good old-fashioned case of the nerves usually attacks me during interviews. It never causes a full-blown disaster, and obviously I’ve managed to stay employed in some form or another since I was 16, but still, I hate this weakness on my part.

So this week, after going over my interview notes I head to the interview. Unfortunately, it was also the coldest morning in Atlanta ever recorded, bottoming out at about 6 degrees F. The area where the interview was to take place was a disaster, due to construction and weather-related snafus. The building had suffered issues due to the weather as well, so I had to enter through an unmarked entrance. All of this left me unsettled to say the least.

There were three interviewers, one who I have worked with a bit previously. I brought a water bottle with me because I get dry mouth in interviews but don’t want to have to navigate a cup in case my hands shake. Well, silly of me to worry about spilling water. I opened the bottle just as the first question was asked and it appeared the bottle was overfilled because it sprayed all over my sweater and pants. Internally I cringed but outwardly I kept that smile pasted on my face and tried to arrange my arms to cover the wet spot.

Afterwards, I definitely felt like it was not my strongest interview. I would have given myself a B-. I felt like I talked too fast and rambled too much, earning the familiar “deer in the headlights” look from the interviewers. I went home feeling depressed, because this was the best job opportunity to come along in awhile. I spent the rest of the day doing a “should have said this” routine in my head.

I sent out thank you emails to all of the interviewers. The guy who I’ve worked with previously replied back and his response blew me away. He said, “You did great in the interview. I wish I could interview like that.”

What???!!!

So that’s my lesson to all of you. How you perceive yourself may be quite different than how others see you. You probably judge yourself much harsher than others do. Be confident that you are doing the best you can and don’t create a failure before the results are even recorded.

For the record, I did get offered one of the positions!

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January 5, 2014 · 9:16 am

The impact of other people’s memories

I want to focus the rest of my January posts on the power that learning of other people’s memories have on us. Over my next posts, I will highlight some of my favorite memoirs, and the vivid memories that really stuck with me long after I finished the book. This time around, I want to talk about the essay featured in the current issue of The Atlantic titled, Surviving Anxiety. It is written by the magazine’s editor, Scott Stossel. It is an excerpt from his upcoming book, which is now on my reading list.

Scott suffers from severe anxiety and several different phobias. I don’t share his extreme level of anxiety, but I do share some of his phobias, like public speaking and vomiting (of which there is a related phobia that I also share, that being vomiting while flying.) He also suffers from digestive issues, which I can certainly sympathize with, as I have experienced numerous digestive issues mainly tied to my gluten intolerance. He writes a compelling and moving account of how these conditions have impacted his life, both negatively and positively. He talks about the pros and cons of the many treatment options he has endured. He bravely shares humiliating episodes where his anxiety or digestive problems rear their ugly heads.

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Scott shares a particularly embarrassing bathroom episode that occurred at the Kennedy compound. (The author was writing a book about one of the Kennedy family members and was spending some time there along with a mix of celebrities and dignitaries.) Scott feels his bowels betray him at the worst moment, when he is not near a public restroom. He runs back to the mansion, trying to avoid other guests and secret service members. He makes it to the restroom but then the worst case scenario happens: the toilet backs up and overflows. He is covered in sewage. Talk about bad timing: just across the hallway from the bathroom, guests are gathering for cocktail hour. Scott cleans up as best he can, then has to wrap a dirty towel around his waist (his pants were ruined) and sprint to his second-floor suite. He makes it, but not before encountering JFK Jr. That experience could make anyone with anxiety want to crawl under a rock and never come out.

He also writes about how he went to therapy for his vomiting phobia and his therapist wanted to use exposure therapy to “cure” him. Meaning, she wanted him to take ipecac and deliberately make himself throw up. After at first refusing and putting it off for several sessions, he finally agrees to do it. But after taking the dose, he doesn’t actually throw up, he just retches. It was an agonizing experience that only strengthened his vomiting phobia. (Ironically, after cheering on her client during the exposure therapy, the therapist herself had to go home because she got sick from watching him try to vomit!)

These memories are written in excruciating detail, with every anxious thought and feeling captured. They struck a chord with me and rolled around in my mind for the rest of the day. My takeaways: you never know what is really going on in someone’s head. (Obviously, as editor of a well-known magazine, Scott has been able to manage his anxiety to a certain extent and still be a successful person.) Also, all of these anxious thoughts and feelings and phobias sound crazy if you haven’t experienced them, but from the response the article has received, there are plenty of anxious people out there who completely understand. I am one of them.

What memories from other people have had a meaningful impact on your life?

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