There is a continuum of Alzheimer's caregiving that runs from Burden to Joy.
By Bob DeMarco
Alzheimer's Reading Room
- Can how you think affect your Alzheimer's caregiving effort?
- Can how you act affect your caregiving effort?
- Can how you talk and the words you use affect your caregiving effort?
- Can how you speak to a person living with Alzheimer's affect how they feel and act?
You bet it can.
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Here is what I learned from the comments, emails, and interaction with caregivers from all over the world.
There is a continuum of Alzheimer's caregiving that runs from Burden to Joy.
Over the years, I watched a long list of caregivers move along the continuum from Burden to Joy. I watched, and I paid attention.
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As far as I can tell, almost all Alzheimer's caregivers start in the same place. A place that can best be described as enormous Burden. I started there even though I willingly chose to be an Alzheimer's caregiver.
If you have been here for a while you know, I
I ran the
I took the
hundreds of times. I am no different than any other caregiver in that respect.
Along the way however, after several moments of
I stepped off the path of burden and on to the path of Joy.
To be honest, when I actually took my first step to the left and entered into Alzheimer's World, I did not realize at the time I had also stepped on to the path of Joy.
In fact, it was several years before before I found the enormous Joy beginning to encompass me.
When I first stepped off the path of Burden and on to the path of Joy, I guess you could say I felt relieved.
For certain I had finally discovered, found I guess you could say, two things I had been desperately searching for:
how to cope, and how to communicate effectively with a person living with dementia.
That person being my mom, Dotty.
So I calmed down, accepted Alzheimer's, actually started thinking of my mom as a regular person who was deeply forgetful, and started paying attention to what worked and what didn't.
I used my eyes and ears, not all of the don't do this and don't do that mumbo jumbo that is out there for you to read.
I no longer worried about what wasn't, instead I focused in on the
Finally after many years it did happened. I started to feel this enormous welling up of Joy inside me. It might be as simple as smile from Dotty. It happened plenty of time when the readers of this blog sent prayers and support when Dotty wasn't doing well.
The enormous Joy is hard to describe. However, I now notice that when I talked about this, the people listening to me start to smile, they look happy.
If you have ever watched a cartoon you might have seen a giant heart pop out of a cartoon characters chest when they experience love. The giant heart might also palpitate, or throb.
That is what the Joy of effective Alzheimer's caregiving feels like.
The Joy just wells up inside you, and physically you feel like your heart is growing inside your chest.
I just wanted to let all of you that have been here with me for a while, and all of the new readers know,
this wonderful and enormous feeling of Joy does not go away after the death of your loved one.
My mother, Dotty, went to Heaven on May 25, 2012.
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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR).
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