capacity – My Alzheimer's Story

No, it’s not a typo. The headline does indeed read Asperger Syndrome and not Alzheimer Disease. And no, the focus of this blog is not changing — this post is a bit of an anomaly.

Lilly*, one of the first and most loyal followers of MyAlzheimersStory.com is an “Aspie.” When I recently befriended someone who, like Lilly, was diagnosed with autism spectrum disorder (ASD or Asperger’s syndrome) later in life (i.e. in his forties), I wanted to know more about the condition so I could be as supportive of my new friend as possible. Understanding is key to communication, and, as we had been collaborating on a project, I felt the more I knew about being an Aspie, the better I would be able to engage him, and the more successful our work together would be. Sadly, the project will now never see the light of day.

Remarkably, as I dug into the information, I recognized the signs of high-functioning ASD in myself, and realized I might easily be considered on the edge of the high functioning end of the spectrum.

When I shared this with Lilly on Messenger, she quickly replied:

“I too believe you could be, you have many high-functioning characteristics, and you troubleshoot with different skill set than “non neurodiverse”, from my observation over the past few years.”

I began my research by revisiting Temple Grandin‘s TED201O talk The World Needs All Kind of Minds, which I had found fascinating when it was first released, and which delivered additional insights on second viewing. Grandin lives with autism, has a doctorate, and is one of the top scientists in the humane livestock handling industry; a highly rated 2010 movie about her life, starring Clare Danes, won a Golden Globe award. She is also the co-author of this groundbreaking book: The Autistic Brain: Thinking Across the Spectrum.

Here is her 2010 TED talk:

This short CNN piece combines live interview with clips from the movie:

I found one of the best “basics” articles on the Autism Speaks Canada website. The article points out that “Asperger syndrome often remains undiagnosed until a child or adult begins to have serious difficulties in school, the workplace or their personal lives. Diagnosis tends to center primarily on difficulties with social interactions.” Other information I found suggests marital issues are frequently among the diagnosis drivers. This excellent Psychology Today article outlines a number of specific, practical strategies that may help get and/or keep a marriage with an Aspie on track. This one in particular struck me:

“Understanding that [Asperger Syndrome] is a biologically-based, neurological difference vs. a psychological mental disorder is key. Learning about [Asperger Syndrome] is important to sort through what challenges are [Asperger Syndrome] based and what are just regular marriage issues. Books, movies, articles, and seminars can help the both partners better understand [Asperger]. Due to its complex nature, learning about [Asperger Syndrome] is lifelong.”

I also found this wonderful video:

There’s a great article on Asperger and creativity here, and another interesting TED talk called Asperger’s: Not Being Afraid Anymore here, and one on meds here. More on girls with autism spectrum disorder here.

People with Alzheimer Disease are often stigmatized and seen as “less than” or deficient in some way. I wrote a poem to help change that mindset. Aspies are similarly stigmatized, and often told there’s something “wrong” with them. There’s nothing wrong with people who are different. They are simply different. So I also wrote a poem about what it might be like for an Aspie to be labeled and stigmatized, from an Aspie perspective. Not surprisingly, I seem to have a pretty good grip on that.

Doing this research was helpful and enlightening for me. I hope it is for you too.

*Not her real name.

http://amazingsusan.com/2018/12/23/see-the-me-thats-me/

https://myalzheimersstory.com/2016/07/24/let-me-shine-a-dementia-rhyme-to-open-minds/

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Joy, Life & Living, Memories

7 strategies to create harmony in dementialand

June 4, 2018 amazingsusan

Dr. Elaine Eshbaugh writes a warm-hearted, funny and insightful blog Welcome to Dementialand, which I’ve quoted before.

The common sense advice above is taken from her post “Time Management in Dementialand;” it caused me to reflect on strategies and tools we may use as care partners to engage our care partners who live with dementia, stay connected and reduce our own stress.

1 ) Take a walk

There’s no downside and multiple upsides to exercise, particularly walking. It’s a great stress reliever for anyone, living with dementia or not; it helps maintain health, gets you out of the home and into a different space. More activities here.

2 ) Go with the flow

Those with severe memory loss live in the moment – they may not recall the recent past or be able to anticipate what comes next. The environment and people around them must draw them in and simplify their interactions with the world. More about going with the flow here.

3 ) Don’t argue or correct

I spent years arguing with my mother and exacerbating no-win situations before I became aware that debate only created more anger and angst. By arguing, I became the cause of her “bad behaviour.” It wasn’t the disease, it was me; it wasn’t her fault, it was mine. More on that here.

4 ) Listen fully

Listen with more than your ears. Use your eyes, your heart and your mind. Learn to look behind behaviour to discover what a person with dementia is trying to communicate by their actions. Listen to their behaviour–it may say a lot more than their words ever will. More on this here.

5 ) Be quiet

I spent countless hours with my mother holding hands, watching birds at a feeder, looking out at a field, simply being together in silence. Quiet times can be as engaging as activity, and silence provides space for possibility if you let it. Remember the “pregnant pause?” More on this here.

6) Put yourself in their shoes

There’s nothing like seeing things from the other person’s perspective to increase understanding and connection. There are tools to help with that here and here.

7) If something doesn’t work, try something else

It’s useful to have multiple strategies and tools at the ready to manage different sets of circumstances and events, any one of which might work or not at any given time. For example, music might help someone to feel calm today, but baking cookies might do the trick tomorrow. Music might be effective again the day after tomorrow and the following day, but not the day following that. Flexibility and creativity are important.

Read Dr. Eshbaugh’s post Time Management in Dementialand here.

https://myalzheimersstory.com/2017/11/13/30-tips-to-help-reduce-anxiety-in-dementia-care/

https://myalzheimersstory.com/2016/01/10/10-things-to-remember-when-you-interact-with-people-who-forget/

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Joy, Life & Living, Memories

5 thought-provoking quotes on memories in dementialand

February 5, 2018 amazingsusan

When I find a gem, I love to share it. So here’s an introduction to Dr Elaine Eshbaugh’s warm-hearted, funny and insightful blog Welcome to Dementialand.

I’ve extracted five thought-provoking quotes from her post of February 5, 2018, entitled “The Importance (or Lack of Importance of Memories in Dementialand,” which made me chuckle as well as tear up when I read it. One of the five quotes I lifted is pictured above; here are the other four:

“It didn’t matter that what she said made little sense. I will take an illogical and positive conversation over a logical and negative one anytime.”

“I don’t believe anything is ever lost–because it happened. And it shaped our life and the lives of those around us. Forgetting what happened doesn’t negate that.”

“When you don’t recall your past and you don’t have the foresight to think about the future, you reside in the present. And sometimes I am amazed at the joy to be found there.”

“I am in awe at how much people still have to give when their memories fade.”

It saddens me that so many people concentrate on the memory loss associated with Alzheimer disease and other forms of dementia, instead of on the joy that may be found in connecting with the person and the capacities that remain.

If we all just shifted focus slightly, dementialand would be a far better place for those who live with ADRD, as well as for those who accompany them.

Read the full text of Dr. Eshbaugh’s post here.

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Advocacy, Care Partnering, Life & Living

my mom still counts and she deserves better

August 13, 2015May 31, 2018 amazingsusan

August 13, 2015: About a year ago, on July 29, 2014, to be specific, I wrote a post about the fact that my Mom counts. I said this among other things:

“…she surprises me every day with what she can do, and how resourceful and resilient she still is even in the late stages of Alzheimer’s disease. She inspires me with her strength, courage and determination. The sheer power of her will and the force of her personality are something to behold. We have struggled through this life together and apart and I see her (and myself) more clearly each day. I appreciate the time we have together now, heart wrenching though it may be.”

A year later, Mom still inspires me despite her decline in the capacities most “normal” people think count most. But I’ve learned there are a whole slew of other things that also count – maybe even more than everything else. Things like deep connection. Things like looking death and dementia straight in the eye. Things like taking a single step then another and another, reaching out and touching a shaking hand, making tea for two and eating wafer-thin ginger snap cookies.

If Mom is awake, which she mostly is not during our restricted visits, she counts to a rhythmic three when I help her to stand up. Sometime she can take a few steps, each one of which is like swimming against the tide or climbing her own Kilimanjaro. Each step counts.

Today, I sat by Mom’s side for two hours as she slept. She and I are at the mercy of forces about which we can do nothing but bide our time. One thing I count on is that everyone’s time runs out sooner or later. So it will be with us and them. Maybe Mom was was counting sheep as she slept today. Maybe she was counting her blessings, as I was mine. I know one thing for sure: neither of us was counting our pennies because you can’t take ’em with you go and if you can’t use ’em to do good and create happiness here and now then what’s the point?

Another thing I know for sure is Mom still counts. We both do. So do the millions of people worldwide who have dementia. So do the millions more who will have it tomorrow and the next day and the one after that. So do the millions of other people who are care partners now and who will be care partners in the future alongside the millions of people living with dementia. It’s the hardest thing any one of us/them will ever do.

We all count. And we deserve better.

Mom died two years and four days after I wrote this post.