By: Elayne Forgie
Did you know one of the most difficult skills an Alzheimer's caregiver has to learn is how to become a juggler?
Although you and I can't see the various balls they're constantly trying to keep in the air, make no mistake about it -- Alzheimer's caregivers spend their days, their weeks, their months and their years doing their very best to master this complicated new skill, determined not to drop the balls, and all the things those balls so often represent.
In the minds of so many family caregivers, the dropping of the ball represents a failure. It could be the failure of a particular task, or the failure to manage a new emotion. If the ball hits the ground, the caregiver might believe they've let their loved one down. If they drop the ball, they might feel they're not good enough, they don't know enough, they don't do enough -- or sadly, that they will never be enough.
Alzheimer's caregivers are amazingly successful at juggling all of the things necessary to meet the needs of their loved one, but each day they're simultaneously learning how to juggle the many emotions they experience as caregivers. Anger, guilt, fear and frustration are just a few of the complex emotional balls these caregivers are trying so hard to keep in the air.
When it comes to learning how to manage the many emotions of caring for someone with Alzheimer's disease, what separates the caregiver who falls asleep feeling satisfied and emotionally content (despite having acknowledged they dropped a few of balls throughout the day) from the caregiver who instead, cries themselves to sleep because they're convinced they failed?
In both instances, the differences are both simple and complex. Caregivers who feel most successful say they learned, early on, new ways to cope and manage their emotions while at the same time, learning how to juggle their new role and manage their increasing responsibilities.
One of the frequently unknown roles a new caregiver must take on is the one in which they commit to becoming a lifelong learner. As an Alzheimer's caregiver, learning how to manage and cope with the many emotions they will experience on their caregiving will truly be a lifelong learning process, and certainly not an isolated event.
There isn't a website, workshop or book that can provide them with all of the education, knowledge, skills, tools and resources they'll need to survive this journey. To stay healthy -- physically, mentally, emotionally, financially, and spiritually -- they'll want to assume the role of a lifelong learner as soon as they can in their caregiving journey. Simply because at various points along the way, they'll have to learn new ways to manage their emotions, provide care and cope with things they've never dreamed of.
Things they never believed they'd actually have to learn. Like how to cope with feeling so angry, so often. Angry at him! Angry at her! Angry at the mailman, the doctor and the dog. Angry at everyone and everything because they didn't sign-up for this. Their life feels like it's spiralling out of control and they resent it.
And then they'll have to learn their feelings of anger and resentment are normal. They'll learn that if they don't allow themselves to feel them, they'll eat them up inside. But before they learn that lesson, someone first has to teach them how to manage the guilt. The guilt they've allowed themselves to feel for daring to be angry at him or her in the first place.
They have so many things to learn. Things like how to change their husband's diaper and how to cope with the conflicting emotions that whole mess brings. Things like learning to pay the bills, mow the lawn, think for two, and how to cope with feeling so sad, so often.
They might have to learn things like why it's somehow OK to tell "little white lies," even though throughout their marriage they've never, ever lied to their husband. Things like how to disguise medications, puree food and sleep with one eye open because they just discovered their husband might walk straight out the front door at 2 a.m.
They'll have to learn other things too. Like how to manage the feelings they get when they have to speak to their adult children. Particularly the one who lives 1,500 miles away and who was taught to use her words wisely and practice empathy. The same one who just found it necessary to share some of her own words of wisdom by calling and saying, "Mom, you obviously don't know what you're doing!"
They'll want to learn things like how to let go of toxic people -- and how to work through the emotions of letting go when the phone stops ringing, and the invitations stop coming from so many people they once thought were their friends.
As an Alzheimer's caregiver, being a lifelong learner begins with recognizing they'll need a teacher or a coach, a trusted ally and advocate. Someone they can count on to guide them throughout their journey. It means learning the most important lesson all of us as professional caregivers and Alzheimer's advocates, want them to remember:
We will help you to find the answers to the question, and the solutions to the problem, all of which will provide you with the ability to continue to move forward, as a stronger, healthier, and more empowered family caregiver.
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