Care Partnering, Challenges & Solutions, Toward better care

7 ways to transform dementia care grief and suffering into joy and healing

Are you a dementia care partner who lives in a world full of grief, loss and suffering? What if you didn’t have to be in that dark, depressing place? What if you could transform your suffering into healing? What if you could release your feelings of grief and loss?

Moreover, what if changing your world was simply a matter of changing your perspective? Would you choose to do it?

When I chose to reframe the way I saw dementia and the people who live with it, I completely changed my experience as a care partner. Others have done the same. Here’s an excerpt from an email I received from FK, a long-time follower of


I really need to thank you so so much for changing my perspective on what was happening to my parents as they both lived with dementia. I have responded to your blog from time to time, mentioned that I was caring for my parents, both of whom had Alzheimer disease, and shared my experience about being with my sister when she died when your mom was approaching that point.

I had moved to [Some Little Town] from [A Big City] in 2011 when my parents began to lose their abilities to live independently, and I eventually became a full-time care partner.  For the first few years after I noticed the first signs of memory loss, I was stuck in that  intense grieving phase and could only see the losses and mourn what felt like my parents disappearing before my eyes.

But after discovering your site/blog and following it, I gradually learned to see that they were still there, still my parents, still loving and able to share many things with me.  My focus changed from mourning each new loss and grieving what lay ahead in the future, to living with them in the moment and trying to share as many moments of joy as possible.  That made a world of difference.  I was able to love them and keep sharing laughter and love until they died (my dad on April 02nd, 2017 after a long, slow decline and many false alarms; my mother very unexpectedly the very next day, April 03rd, 2017.  Thanks to you, I look back on those years as, in many ways, a happy time despite all the difficulties, frustrations, fears and tears.

I lost a legal bid to get control of my mother’s care in February 2014. Shortly thereafter, I launched I wanted to share my journey and learnings as a care partner, and help others avert some of the challenges and pitfalls I had faced.

As I learned more about Alzheimer disease and other illnesses that cause dementia, I also came to realize we can radically change our experience of dementia and the people who live with it by reframing the way we see it and them. Helping people transform their experience from suffering to healing has become an integral part of my advocacy–one that’s working as FK’s email demonstrates!

Here are seven ways you can reframe and change your dementia care experience:

  1. Focus on what remains rather than what has been lost
  2. Look for potential rather than staying stuck in deficit
  3. See the person, not the disease
  4. Understand that people who live with dementia are still people, not “empty shells”
  5. Understand that people who live with dementia have the same needs we all have
  6. Create opportunities to experience joy and happiness
  7. Find things to laugh at instead of things to cry over

I did it. FK did it. You can do it too.

17 links to the “other side” of dementia

do you see what i see?

3 excerpts from the best article on dementia i have ever read (and a link to the full meal deal)

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Care Partnering, Family, Inspiration, Videos

this is what tragic brilliance looks like

In 2011, UK pub owner Alex Lewis somehow contracted Strep A, an incredibly rare bacterial infection from which a person’s flesh starts to eat itself.  The infection attacks the limbs, then works its way inwards, through the joints, past the vital organs before finally – fatally – destroying the heart.

“I shouldn’t have survived it,” he says. “I think 10,000 people a year contract Strep in some form, and of those about 9,600 die. Then of the 400 left, only about 10 have quadruple amputations. I’m one of the lucky ones, definitely,” Lewis says in this 2016 Telegraph article.

I watched the documentary below, spellbound for an hour, as Lewis’s story unfolded starting with how the disease left him severely disfigured and disabled. Both he and his life partner Lucy demonstrate unbelievable courage, determination and loyalty throughout the several years covered in the video that focuses on hope and possibility.

While Lewis’s story isn’t about Alzheimer disease or another form of dementia, it is about love, care, caring, challenge, courage, compassion, determination, life, living, reframing and transformation, all of which are integral to the lives lived by people with dementia and their care partners.

I hope you find it as inspirational as I do.

Lewis’s closing words reminded me of what Mom told me in 2014, and what caregivers from around the world said they had learned when I asked (also inspirational):

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