A moment of feeling lost

As I mentioned recently, I just finished the excellent novel, “Still Alice” which is told from the perspective of a woman with early-onset Alzheimer’s. One facet of the book that seemed very realistic and frightening to me is how the character gets lost on her travels through her neighborhood. I love to walk around my neighborhood (the character in the book loves to run or ride her bicycle). I have lived in my neighborhood since 1997, and like to think I know it like the back of my hand.

blank street sign

But an experience last week gave me just the tiniest insight into how disconcerting feeling lost amidst the familiar can be.

I was going to a dentist appointment, and my dentist had moved his office to a condo building just off the park that is in the center of my neighborhood. I made a note of the new address, and then made an assumption of where I thought it was located. Ironically, I was actually reflecting on “Still Alice” as I was walking to my appointment!

So I reached the corner where I thought the office would be, and no condo building. Then I realized that I was probably a couple of blocks off. But in my mind, I could not picture where this condo building would be along the street that matched the address. I started walking hurriedly, not wanting to be late. A car honked, and a co-worker of mine shouted out my name and waved to me, distracting me further. I was about halfway down the street and thought for sure that there was no condo building at the end of the street. But there had to be! It was hard to see the house numbers so I couldn’t use that as my gauge. I finally broke out Google Maps on my phone but the sun was shining bright and it was hard to follow the arrow to see if I was walking in the right direction.

I was reaching a mild panic at this point, and also felt embarrassed. How could I be lost in my own neighborhood?

Suddenly, like magic, the condo building appeared. It is newish, and I don’t walk down this street very often, but as it turned out, I went out of my way to get to it because of my careless planning. My heart was pounding a bit as I stepped into the dentist’s office, with a few minutes to spare.

The experience gave me a better understanding of disorientation, a common symptom of Alzheimer’s. It also reminded me how often we put ourselves on auto-pilot as we go about running errands and performing daily tasks. We take so much for granted. Alzheimer’s shows us how much we have to lose when our brain function falters.

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What about dementia in the workplace?

This week, there has been much talk about the Donald Sterling interview on CNN. The Clippers owner continues to make outrageous statements and accusations. It is easy to dismiss him as a crazy, racist old man who has not embraced modern civilization.

office blurry

But then his wife, in another interview, stated that she thinks Sterling has dementia. Now, the wife is desperately trying to retain her stake in the team, so she may just be doing damage control and trying to drum up sympathy. Still, it raised an interesting question for me.

What do we do about dementia in the workplace?

I wrote an article asking the same question on LinkedIn. I am curious to know what laws or regulations exist in the area you live in, or if the company you work for addresses the topic of dementia in any way. Dementia isn’t a new disease, obviously, but my guess is that in past generations, older people who started having difficulties on the job were just encouraged to retire sooner. Most probably did. But in today’s economy, retirement isn’t an option for many older people, or at best, they delay their retirement by several years. There is also the growing number of early-onset Alzheimer’s cases to contend with, so those in their career prime, in their late 30’s and 40s, could also have to tackle this issue.

I’d also like to know what policies you think should be put in place to deal with this sensitive issue. I’m trying to gather perspective from both sides, from the more business-focused people on LinkedIn, to the dementia awareness advocates that I follow here on WordPress.

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To my mother, a wonderful caregiver

My mom and I don’t always see eye-to-eye, and sometimes she drives me crazy. But while these last several years have been difficult for our family, they have also highlighted my mom’s wonderful qualities.

mom-sketch

So on Mother’s Day, I want to honor my mom, who was such a tireless and loving caregiver for my dad. I took for granted all of the things she did for Dad. It was not until I became my mom’s caregiver that I appreciated all of the sacrifices she made.

This is a sketch of my mom done while she was in the Navy, in the early 1960’s. It was then burned/engraved into a wood canvas. It is really a unique work, and captures my mom’s cheerful spirit.

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Alzheimer’s from the inside out

I finally read “Still Alice” by Lisa Genova. The book came out over five years ago and has been sitting on my must-read list for almost that long. After recently hearing about the upcoming movie adaptation starring Julianne Moore, one of my favorite actresses, I put aside my other reading selections and immediately dived in to the novel.

still-alice-2

“Still Alice” is unique because it attempts to capture the Alzheimer’s experience from a character with early-onset Alzheimer’s as she experiences the early to middle stages of the disease. This is Genova’s first novel, but as a neuroscientist, she has another important angle to add to the book.

While the main character, Alice Howland, is a respected Harvard professor, I still connected with her and could imagine my reactions being very similar to hers if I should ever be cursed with this dreaded disease. Genova does a great job of showing how those in the earlier stages of Alzheimer’s work so hard to cover up their symptoms and appear “normal.” Then one day, even their best efforts are not enough. Genova also illustrates how much fear and dread those with Alzheimer’s experience, most of it retained in an internal dialogue that their loved ones may be completely unaware exists. Some readers may be turned off by how the husband is presented in the book, but I think his response to his wife’s disease is pretty realistic, if unfortunate.

The story immediately draws you in and the main character is well-developed. She is a witty, sensitive intellectual which makes her mental decline all the more heartbreaking.

I highly recommend the book if you haven’t read it yet. If you have, let me know what you thought about the story.

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Communication Strategies

Effective communication skills can be difficult for us to learn as dementia caregivers. We really have to rethink our approach. The tips offered here are an excellent reference to keep handy.

trusso599's avatarCaregiver 2.0

communication

As the disease progresses, the communication skills of a person with dementia will gradually decline. Eventually, he or she will have more difficulty expressing thoughts and emotions. Ultimately, the person will be unable to understand what is being communicated and lose the ability for verbal expression.

The challenges associated with communication can lead to frustration. It can be helpful for you to understand what changes may occur over time so you can prepare and make adjustments. Anticipating these changes and knowing how to respond can help everyone communicate more effectively.

Tips for successful communication:

  • Allow time for response so the person can think about what he or she wants to say.
  • Engage the person in one-on-one conversation in a quiet space with minimal distractions.
  • Be patient and supportive. Offering comfort and reassurance can encourage the person to explain his or her thoughts.
  • Maintain good eye contact. It shows you care…

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5 required skills for the toughest job in the world | LinkedIn

I’ve been writing some articles on the LinkedIn platform. When I was brainstorming content ideas, it struck me how many common workplace skills are needed when serving as a family caregiver. Of course, there are many more new skills that you will be required to learn on the fly! In my LinkedIn piece, I highlight five skills I found invaluable while serving as a family caregiver and patient advocate.

holding hands

You can check out my piece here:

5 required skills for the toughest job in the world | LinkedIn.

What skills do you find most helpful as you carry out your caregiving duties? What new skills were the most difficult to learn in order to be a successful caregiver?

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Finding Rays of Joy in the Dark Clouds of Alzheimer’s

Top 100 Amazon best seller! Please support this project to help raise funds and awareness for Alzheimer’s.

alzga's avatar Georgia Chapter Blog

Joy & her father, 2011 Joy & her father, 2011

As an admitted pessimist, I watched with a heavy heart as Alzheimer’s crippled my dad’s mind and body. On one visit home, my dad restlessly paced the living room floor, then suddenly stopped in front of the couch where my mom and I were sitting. He asked, with complete sincerity, “Where’s Jane?” My mom’s name is Jane, and my parents were married for 40 years. I felt like someone had punched me in the gut. My mom remained calm, obviously used to this line of questioning. She simply responded, “I’m right here.” Mom’s strength as my dad’s primary caregiver continued to amaze me throughout my dad’s battle with Alzheimer’s. After breaking her shoulder due to a fall no doubt caused by exhaustion, she still boarded a bus for the hour-and-a-half trip each way to visit my dad in the memory care center he was residing…

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“Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias” goes on sale today

Today is the big day! As I wrote previously, I am so honored to have a story about my father included in the latest “Chicken Soup for the Soul” book. This special edition is dedicated to those with Alzheimer’s or other dementias and their families. The collection includes stories of love, compassion, inspiration and yes, even humor. The best part is that the book is a collaboration with the Alzheimer’s Association, and all royalties will go to the Alzheimer’s Association to help spread awareness about this terrible disease. The book, “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias” goes on sale today, at Amazon and all major book retailers and online outlets.

CSS Living with Alzheimer's & Other Dementias

As many of you reading this find yourself the family caregiver of someone with Alzheimer’s, I know you will appreciate the book. It would make a thoughtful gift for anyone coping with Alzheimer’s in their family. If you cannot afford to buy the book, request it at your local library. You will laugh, you will cry and you will gain a greater appreciation of the strength of family caregivers.

If you are curious, my story is titled, “French Toast,” and appears in “The Lighter Side” section. Some of my favorite stories were the funny ones, surprisingly. I loved the one about the mother-in-law who hated cats but had a surprising reaction to a feline when she is in the mid-stage of Alzheimer’s. I also loved the story about the mother with Alzheimer’s who wakes up her daughter in the middle of the night to tell her there is a bird in the house. You’ll have to read the book to find out the wild ending of that story!

I know that wherever Dad’s spirit is now, he would be proud of me for being a part of this project.

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All dressed up for Easter

Easter makes me reflect on pleasant childhood memories. I wasn’t big on dressing up, but I guess Mom managed to finagle a dress on me for some Easter photos. I’m glad that she did, because I do love this photo.

dad-easter

Easter makes me think of lovely springtime weather, and plastic eggs filled with jelly beans. I can still remember the scent they had. I remember racing through grass looking for hidden eggs at hunts at the local park.

Happy Easter for those who celebrate, both religious and secular versions of the holiday. I know that this is a holiday of hope and renewal for many. Those are two concepts we don’t often associate with Alzheimer’s and dementia. But as caregivers and family members of those with dementia, we need all of the hope we can muster.

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A memory on a postcard

Today I want to highlight a nonprofit organization that I just stumbled upon. They’ve been around since 2009, so many of you may be familiar with them, but I wasn’t. The group is called The Spaces Between Your Fingers Project and the group writes memory snapshots for people with Alzheimer’s that are recorded on postcards and sent to families. The service is free, and a copy of the memory postcard is kept in the Free Library of Philadelphia for archiving purposes. The organization has collaborated with the Alzheimer’s Association in the past. The group also has set up an online tool that allows anyone to record a memory postcard, whether they have dementia or not.

postcard

I love this concept, it is so unique and is a great way to encourage people to record family memories. If you are wondering what “the space between your fingers” means, there is a lovely storybook on their site that takes you through the very touching tale inspired by the founder’s grandfather. You may look at Alzheimer’s in a whole new light.

I plan on giving the service a try soon and will share what I create.

What is the first memory from your life that you would want to preserve?

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