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 MyAlzheimersStory.com:
Susan,
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 MyAlzheimersStory.com. 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:
- Focus on what remains rather than what has been lost
- Look for potential rather than staying stuck in deficit
- See the person, not the disease
- Understand that people who live with dementia are still people, not “empty shells”
- Understand that people who live with dementia have the same needs we all have
- Create opportunities to experience joy and happiness
- Find things to laugh at instead of things to cry over
I did it. FK did it. You can do it too.
3 excerpts from the best article on dementia i have ever read (and a link to the full meal deal)
Karen Hirst is a former Registered Nurse, who worked primarily in the field of geriatric nursing. She began her career as a Health Care Aide Instructor and held positions of increasing responsibility over several decades. She spent her final 16 years as a charge nurse at Fairview Manor, Almonte, Ontario. Now retired, Hirst writes on topics that interest her, and is actively involved in her community. This piece is from a collection entitled “A Tapestry of Shared Moments In Long Term Care.”
black. “Maybe she can’t figure out where the seat is because the colour,” I thought to myself. Then I had an “Aha!” moment.
My Alzheimer's Story 