The Dementia Care Warriors blog is a product of my original blog "Vee, Myself and I". I started the blog in 2015 as an outlet and resource during the early days of my caregiving journey. When I first started this journey, I only saw sad and depressing content online around the topic of Alzheimer's caregiving and I really didn't get it. As a positive person myself, I couldn't understand why everyone was so sad.
I decided I would create an online space with uplifting, positive and funny content to assist caregivers on this journey. Yay me!
Seven years later however, I get it. No, really. I understand why all of the personal stories and blogs I found were so sad and dark. To put it plainly, this job is not fun. While there are bright moments, much of this journey is dark.
I came across a blog post recently that was so moving and so well written and so well articulated the feelings that a lot of caregivers face that I felt compelled to share it with you.
As a caregiver who has been at this for SEVEN years. As a caregiver who completed this journey with my grandmother. As a caregiver who immediately jumped into caregiving for my mom without a break. And as a caregiver who knows first hand the beginning, middle and end of the Alzheimer's caregiver journey...this post really hit home.
I first read the post on Instagram and literally thought it was a poem. The words are so poetic...so flowing that they have an artistic tone to them. Bravo!
I don't know the author personally, but I so appreciate her vulnerability and her sharing of her story. You can follow her on Instagram @stumpedtowndementia. I've also included a link to her website below so you can read the complete post. I encourage you to explore some of her other posts as well. Her writing is excellent!
From the words of Stumped Town Dementia's author Lickety Glitz...
Courting Indifference ~ Sporting Impatience
While Stage 7 dementia has its benefits and its misfortunes, I am saddened by the recent downturn my caregiving proficiency has taken. A decline so gradual it took me awhile to perceive.
I suspect I've inched down the path of Indifference for emotional protection. And I've discovered that when I'm not wielding indifference, I'm unsheathing Impatience to rain down on Mom's head.
On the rare occasion when I can conjure good cheer towards my mother it is not often heartfelt; a song and dance lacking sincerity, dishonest in its cheapened grin.
My hands-on Mom days are now mostly hands-off. I begin by staying in bed listening to her shuffle here and there while I avoid committing to the day for as long as possible - if I don't get up I don't have to deal with her, with dementia.
I eventually rise knowing dementia will punish me mightily if toileting does not commence.
I get her tea and oatmeal, her pills for the day tucked in raspberries, buried in the pasty grains slathered with maple syrup. During feeding I coax first when she nods off, then snap when I have deemed the process is taking too long.
.
.
.
After four years of family caregiving I know I am drained. My cloak of compassion is ragged, thread-bare. I now view Mom more as a job I need to endure versus a heroine's adventure to walk her to death's door. Instead, I am villainess, looking for a tower to lock her up in so I may pursue my own pleasures unhampered.
I ask myself, "How much longer will I be chained to dementia?"
And that is the crux of the problem.
In a tale of kings and queens, scary forests and fiends the characters do not know their fate, do not foresee the happily-ever-after that's coming - instead they stumble and lurch through their plot lines with no end of conflict in sight.
But we, the readers of these tales, know the end is near as chapters dwindle to final pages. We know a resolution is on the horizon. We are not left writhing in years of suspense.
In dementia you are.
If I could check Mom's backside for a barcode and an expiration date I would be able to fortify my resolve, banish my indifference, shore up depleted repositories of empathy, compassion, patience for another 6-months, a year...
And if it were known that dementia is going to take Mom the maximum distance of another 5 - 10 years then I could soul-search to determine if bending that much of my life to my mother's death is really in everyone's best interest.