Living With Alzheimer’s: A Spark of Self & Humanity

May 12, 2009 at 2:51 pm 7 comments

This past weekend, HBO launched their latest documentary series, “The  Alzheimer’s Project.” With the help of executive producer Maria Shriver, it promises to be touching, sobering, and hopeful.

imageFor me, it’s always the personal stories that speak loudest, and this 4 part film series promises plenty of those.  Mental challenges of all sorts just fascinate me, in part, because of how they shine a spotlight on the beauty of our individual characters – and the challenges of Alzheimer’s and dementia are no exception.

My Great-Grandmother, Mimi,  was a perfect example: after suffering a stroke,  she lived at home under my Great Uncle’s care, until her progressively failing memory and developing dementia became too much for him,  and the family reluctantly found her a place in a well-tended retirement home.

But even through the advancing mental fog, sparks of who she was would break through, usually echoing her ever-independent  and contrary spirit (which made her quite a challenge for her caretakers, I understand!). Cantankerousness was nothing new for Mimi – she’d always gone her own headstrong way, and seen herself as a cut above others.

So it  surprised no one when, after a week at the retirement home, she declared her intent to go home.

What did surprise everyone was her major complaint:

“This place is full of OLD people!”

For me, that summarizes my great grandmother’s essence: a refusal to surrender to convention or her circumstances.

When she was young, you could always spot  her in  family photos.  Her sisters would all be dressed in the proper, demure browns and blacks of the period, but there she would be in her red dress and hat, clearly different, even in B&W photos.  She’d immigrated from Denmark as a teen, then lived through the worst of the depression as a single working parent with a houseful of children, and for a while, even lived with them in a converted railroad boxcar for a time.

Mimi did not know how to surrender, and she was aghast at this building full of “old people,” so many of whom had evidently given up.  Even in her worst moments, that spark was there, fighting her circumstances, refusing to surrender, always making her views and intentions known,  even though it made the jobs of her caretakers infinitely more difficult. (I’m positive she didn’t think their difficulties were any of *her* business)

That was Mimi.

Which brings me back to the HBO series:

One of the patients profiled in “The Alzheimer’s Project” shows a very different sort of spark of self expression:  careful arrangements of household objects that can best be described as spontaneous art installations.

Documented on her daughter Annie’s blog, Josephine Mickow’s arrangements reveal something about her creative vision, and maybe more importantly, just how present she still is, inspite of Alzheimer’s.

According to Annie’s writings, her mother had always been creative, finding an outlet in painting, needle work, and a sort of early “found art” — she would discover an image in a rock or piece of wood, see a pattern or object in it, and paint it to bring her vision into focus.

And even as her Alzheimer’s advances, she’s found new ways for that expression, gathering found objects wherever she is, and carefully arranging them in patterns that are aesthetically pleasing and sometimes laugh out loud witty.  There’s something honest and forthright about them, simple but complex art without pretense.

Looking at the photos of her “art projects”…

I feel like I know Josephine in a way I never would, otherwise, even if I lived with her.

Maybe it’s because I’m an artist myself; maybe I’m projecting. Maybe  I only  imagine that I understand the language of line, pattern and color Josephine speaks in, with her arrangements, and maybe her lack of pretence is more than made up for by my own vanity in imagining deeper meaning there.

But to me, her arrangements speak volumes about  the unique human drive for self expression, and to me,  her art projects are another version of  Mimi’s  “This place is full of old people!” – a different sort of refusal to surrender to the circumstances of her life, an insistence that she is, and will continue to be herself, and continue to express the unique marvels not just of the human mind and spirit, but of HER human mind and spirit.

I hope that Josephine’s  family can take some comfort in that.

I hope we all can.

Because there’s something very reassuring to me in knowing that despite all of the challenges to her mind and memory, and the harsh reality that Alzheimer’s and dementia can steal our very sense of self…. Josephine is still there, inside… just as Mimi was, just as many others who are living with Alzheimer’s and dementia are still inside.  And by allowing and encouraging their self expression, in whatever means they find it, we stimulate their minds, encourage more vibrant living not only for the victims of the diseases, but for the human spirit as a whole.

_________________

You can view the photos of Josephine’s arrangements on her daughter Annie’s blog, here: http://maplecorners.blogspot.com/search/label/Art

And an example of Josephine’s pre-Alzheimer’s art is here: http://maplecorners.blogspot.com/search/label/Pre-Alzheimer%27s%20Art

If you’d like to watch the HBO series that brought me to Josephine’s art, the cable network has generously made the films and supporting materials freely available on their website, with clips available on YouTube and iTunes, as well additional exposure for the topic on MySpace and Facebook.  This is a major undertaking from HBO, and holds a lot of promise for raising awareness of the disease among the public.

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7 Comments Add your own

  • 1. Christine Sotmary  |  May 14, 2009 at 4:08 am

    I was amazed at the guy who got up and sang that really LONG song. He reminded me of my husband who could still play his guitar well into his disease and then switched to scat singing in its later stages. I wrote a memoir with similar themes to your post. Now I am thinking it is a journey that we are invited into where there is a land of Alzheimer’s complete with language, perspective and intense emotions. Caregivers are invited, sometimes gently and sometimes harshly to come visit and enjoy the new world that is being offered.

    Reply
    • 2. Tori Deaux  |  May 14, 2009 at 1:07 pm

      Hi Christine – I love this remark from you!

      … it is a journey that we are invited into where there is a land of Alzheimer’s complete with language, perspective and intense emotions. Caregivers are invited, sometimes gently and sometimes harshly to come visit and enjoy the new world that is being offered.

      A dear friend of mine used very similar words, once, when speaking of working with the mentally ill. Her father had been a psychiatrist in those now-shuttered institutions, and she’d grown up wandering the halls, talking to the patients. With her father’s help, she discovered how to talk to them in their own worlds, to to speak their language, and even how to translate what they were telling her to their families and doctors. Her father helped lead the charge towards treating institutionalized patients with dignity and humanity – I’d love to see a similar revolution happen now, in nursing and retirement homes.

      Reply
      • 3. Edward Jones  |  May 14, 2009 at 7:24 pm

        Yes! You guys nailed it on the head! It is the land of Alzheimer’s! It’s a transition into a different state of being with different perceptions and different ways of interacting. Indeed, we should do whatever we can to avoid it (and thanks for starting up this blog, Tori and whoever Dakim is) and fight it once we have it, but we should not fear it and shut down. We should continue to explore our world with those changing perspectives and continue to create and give back.

        Have you guys heard of the story of Gloria Jean? http://www.gloriajean.org/main/004_Gloria%27s_Art.cfm#Gloa She got into art as a result of therapy for Alzheimer’s and really blossomed — her work got some critical acclaim. Sadly she passed away from Alzheimer’s a while ago.

        Let’s inspire all those inflicted with Alzheimer’s to continue to live and not give up. Let’s change everyone’s perspective of the disease so that a diagnosis is not totally devastating to their continued lives.

        Wonderful observations, ladies. My commendations to you both.

      • 4. Tori Deaux  |  May 18, 2009 at 4:28 pm

        Edward, I hadn’t heard of Gloria Jean… thank you for sharing the link. Somewhere around here I have the link to a whole website featuring the art of Alzheimers and Dementia patients…. wonder if I can turn it up? And as far as I’m concerned, you’re absolutely on the mark, with your well chosen remarks about inspiration and changing perspective.

        BTW, I’ve also heard from Annie, the daughter mentioned above, and I’m looking forward to seeing more about Josephine’s work : )

        And Dakim? They’re a really top-of-the-line brain fitness company, and the top provider to senior living providers – so they have a vested interest in improving the lives of patients. There are some pretty cool samples of their brain-training games on the website, too.

  • 5. Charles Roberson  |  May 19, 2009 at 8:14 am

    Hi Edward,

    As Tori mentioned, Dakim is a developer of brain fitness products. Our mission is to help senior’s preserve brain health and fight the threat of Alzheimer’s….We believe strongly in the notion of building a cognitive reserve to combat the onset of dementia. We partner with senior living providers and also offer a home unit version of our technology to consumers.

    Another blog we sponsor that you might be interested in….http://brainfitnesscaregiver.wordpress.com/

    Great Blog Tori!

    Reply
  • 6. Edward Jones  |  May 20, 2009 at 6:53 pm

    Sadly, the time when I could have benefitted from the gift of Dakim’s product or caregiving info has passed.

    Thanks all the same. I checked out Dakim’s website and it seems they are doing something important. What I find pitiful, though, is that our elders don’t receive stimulation they need from society and loved ones. Are they all just stuck in rooms watching TV brains atrophying away? That’s why I like what Tori is saying because it is basically telling people to get up and live and take this into their own hands.

    The Dakim concept is still a good one and MUCH needed by our society with misplaced values. Our elders are still useful and wouldn’t mind hearing what Tori might have to say about that as she evolves this blog.

    I wish Dakim luck as there are many who desperately need what they offer.

    Reply
  • […] why I find stories like Josephine’s so compelling; her art installations are a means of communicating and interacting with the world, a […]

    Reply

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A healthy mind and brain is key to a healthy, active life. Come along for the ride as we explore the basics of brain health, with topics including:
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