Multiple Sclerosis (MS) is a real bitch. I mean, that is what I perceive it to be, although I am not the one with the diagnosis; my mom deals with the daily unpredictability of this chronic disease, and we, her family, work to support her the best we can.
However, caregiving is a topic that often discussed in hushed tones. The responsibility is a mash-up of seemingly conflicting emotions; guilt and resentment, love and frustration and fear and hope are just a few of the feelings that are constantly taken into account as I manage my mother’s affairs.
Diagnosed with MS in 1988 at the age of 26, she has fought long and hard against this nasty beast. Secondary or not, she also suffers from psychiatric issues that exacerbate her physical status and impede her ability to make cogent decisions.
Cue collective groan.
I took over managing her care, from doctor’s visits and billing to past due accounts and medication management in 2005. Between her constant calls, hours spent on the phone with Medicare, managing doctors’ appointments, bills, prescriptions, pharmacies and every facet of one’s life, I sometimes feel torn between resentment and love, which inevitably leads to immense guilt. Productive, I know.
As a caregiver, every decision, both professional and personal, is driven in large part by my mothers’ medical, financial and psychological needs. It has affected our family’s finances. It has affected our decision to not give my son a brother or sister. I cannot tell you the number of times I have had to frantically search for daycare for our son because my husband was traveling for work and my mom was going through yet another crisis.
Screw you, MS.
And the money. Caregiver or not, most people suffering from or supporting a loved one with an illness know about the money. In our case, SSDI and a pension help subsidize her general costs of living. That said, we now spend thousands of dollars out of our pockets annually to support her living and medical needs.
Though it causes financial strain, I can’t help but think of all the other families who can’t afford adequate care and oversight. Those who can’t cover medication and therapy expenses. The ones who don’t have the hours free to search for supportive programs. Most caregivers (us included) are not trained case managers, and yet we are expected to identify and apply for resources that aren’t always obvious.
But there are always silver linings. In my case, I find humor in the absurd. Whether it be a broken system, or my mom’s unbelievable make-up habit (the woman LOVES eye-shadow), I try to find the funny in these otherwise banal or increasingly aggravating situations. Caregivers also seek out a community – a tribe of empathetic ears who “get it” and help each other focus on solutions. We remind each other that as guilt-ridden or frustrating as any one day might be, we are working so hard not out of obligation but love.
So if you see me slamming resting my head on the steering wheel while my mom wags her finger me, or frantically rushing about town with a preschooler and woman with a walker in tow, please know that I am trying. And if I am short with them, they probably deserved it.
Annie Swingen is a communications professional, freelance writer, and blogger living the dream in Chicago, IL. She keeps herself occupied penning humorous posts about her strong-willed preschooler, nerdy husband, and high-maintenance (and often unreasonable) mother. She also enjoys writing about anything that strikes her as odd or total BS. Find Annie on Facebook and Twitter, in the parenting section of the Chicago Tribune and humorous parenting anthology Motherhood May Cause Drowsiness, and on her ChicagoNow blog, Swirleytime.