10 October 2016

Article for the Michael J. Fox Foundation and my business blog at Avasbutler.com

I’m an organizational development consultant who specializes in helping business leaders achieve transformational change; it’s my life’s calling.

But not all change is wanted. My dear husband, Richard, lives with Parkinson’s disease and Lewy body dementia. It’s costly, time consuming, and emotionally draining. No currently available drug will cure him, although there is hope for future generations.

There’s an irony to unwanted change happening to the change expert. Though my background provides helpful skills and experience, I’m in uncharted waters. I learn every day. And I’ve got a long ways to go.

Here’s some of what I’ve learned so far about dealing with a change you don’t want but can’t avoid.

Keep the beautiful moments in the forefront of your mind.

There are plenty of painful moments that threaten to take over your consciousness. I try to balance upsetting thoughts with those of the tender kiss that still takes my breath away, Richard placing his hand on top of mine, and his beautiful blue eyes when they still twinkle. Or the way that his face lights up when a caregiver’s daughter sings a song she learned that day.

Be grateful for the big and small acts of kindness that others show you.

Be vulnerable enough to let people you know— or complete strangers—help in ways you would never ask for or even think of.

As they say on airplanes, “Put your own oxygen mask on before helping others.”

You cannot help if you are burning yourself out. Take the time to go out with friends, take a walk, or do whatever makes you happy or gives you a break.

Be kind to yourself.

You will make silly mistakes due to stress and big mistakes because you didn’t know any better at the time. Try not to beat yourself up.

Don’t be afraid of medical terms or of not understanding the doctors.

It’s their job to explain things to you. Ask questions and paraphrase back to ensure understanding. Ask again and again until you feel comfortable with your understanding of the information you need to manage your situation.

Know that others are facing challenges or grieving too.

And they might say or do things that aren’t helpful. But they are trying to do what they think is best. In the event that someone’s attitude or advice is not helping you at all, don’t hesitate to ask for space.

Do your best to accept your new normal.

There is no point in expecting your life to be like it was before the disease or like those of your peers. Your life is different and special now. Do what you can to enjoy it.

For us, international travel was a big part of our lives. We can’t do that anymore. But we can take a trip to our local mountains for an hour.

Help others like you find their way.

Take the time to connect and share with others. I’ve been able to help others who are at different places in their journey. In turn, they support me too.

Pray for the best and plan for the worst.

You want the best for your loved ones and yourself. Miracles do happen. But I also focus on sobering things like financial planning and preparations for if and when Richard needs a wheelchair.

There are millions of people managing unwanted change, with every imaginable background and story. I hope my advice can help others, and I look forward to hearing others’ reactions and suggestions.


This is a chapter from my book Parkinson’s: A Love Story with Dementia for Dessert.  You may find it on Amazon.  https://www.amazon.com/Parkinsons-Love-Story-Dementia-Dessert-ebook/dp/B07K4RLC2D/ref=sr_1_1?ie=UTF8&qid=1542135434&sr=8-1&keywords=Parkinson%27s+A+Love+Story+with+Dementia+for+Dessert&dpID=41xS3edPH0L&preST=_SY445_QL70_&dpSrc=srch  Your feedback and reviews are most welcome.

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