Ask any new caregiver and they’ll likely tell you that nothing is more overwhelming than learning a loved one has dementia and now needs their help in ways they’d never expected and certainly hadn’t anticipated.Dementia has this uncanny knack of choosing the unsuspecting and ill-prepared.
And until you’ve walked in the shoes of a dementia caregiver, you’ll never fully grasp the all-encompassing disruption to life as you knew it–the indecision, the conflict between what you know is real and what your loved one perceives, and even the resentment for this new life you’ve been handed.
There’ll betimes when you’ll want to leap off this new path you’re on, charging in the opposite direction to escape the torturous daily changes you’ve been (or soon will be)witnessing from your loved one.How many times did I?
And how many times do I wish now that I could go back? What would I give to change that one regretful interaction (or three) I had with my mother?Those times when I was so busy being task master and savior-from-small-catastrophes that I forgot to laugh? Or when I acted loving but felt anything but that?
Those times when she was the most unlovable, firing accusations and behaving in ways the mother who raised me never would have–were also the times she was the most frightened and confused. In her mind, every bit of power she had in her life was now taken from her by her daughter, and she lashed out. And what did I do? I rationalized. I denied. And I defended myself to her. All mistakes common to the newly indoctrinated caregiver. It was only when I truly saw my mother for the person she was,by practicing empathy and compassion,that I was able to feel my genuine love return, and it’s those memories I cling to now.
I’ve come to realize that there are so many small ways to give love and even more ways to show it. And dementia or not, they know. They hear it in your voice. They see it in your expressions.It takes practice when they’re firing tennis balls at your head, but you’ll get plenty of practice –sometimes in one sitting.
It was the “after” that was hardest on me–after she’d gone. No more chances for another do-over. The time to make those changes is now, while you’re still walking on this path with your loved one, and so worth it.
Carolyn Birrell retired to Bonners Ferry, ID, after having spent 20 years in Atlanta, GA, where she worked for the American Cancer Society National Headquarters and then as a real estate agent. Soon after her move, she relocated her aging mother to be near her and spent the next eight years caring for her while learning “all things dementia.”
She began writing initially to help her make sense of her mother’s early-stage dementia and the terrifying behaviors that came with it. It didn’t take her long to realize she’d been writing the very book she’d been searching for – the one that not only tells one woman’s story of traveling down her mother’s path into dementia from its beginning to its inevitable end, but also helps others who are struggling to keep pace with their own loved one and desperately needing help. These days you can usually find her pulling weeds, plucking strings on her ukulele, or on her paddleboard. “Walking with Fay” can be found at www.carolynbirrell.com, on Amazon, or anywhere you buy books.