‘Independence’ Takes Support
Noticing I’m wearing an old MS Walk shirt that exclaims “Every hour SOMEONE LEARNS they have MS!”… OK so how often does someone learn they are a MS caregiver?
We are never really diagnosed … to paraphrase Shakespeare from ‘Twelfth Night’ … “Some are born MS Caregivers, some achieve MS Caregiver and others have MS Caregiving thrust upon them”.
In our story Patti was diagnosed with ‘probable MS’ in 1985 yet with no symptoms ever recurring for 4 years except numbness in fingers that triggered diagnosis … she no more had MS than I was a MS Caregiver. … We were a normal double income couple.
Reading through MultipleSclerosis.Net I am amazed at the amount of "mild" MS … then again we began before the Internet much less smart phones and such, maybe there always was the same amount just unable to find each other.
If the percentage of mild MS extended by disease modifying drugs is higher does that mean MS Caregivers are fading away?
Excuse me I digress … this is about becoming (diagnosed) as a MS Caregiver. To me that happened Thanksgiving morning 1989 when Patti was hospitalized with her first major MS exacerbation.
Or did it happen the first time I was awakened by a pre-school age overnight accident “Daddy please don’t let Mommy see me like this!” … Patti, my wife, since her first exacerbation on Thanksgiving morning 1989 had never safely held our daughter, nor changed a diaper again.
When a childhood effort at independence becomes an "accident" am I a MS caregiver or just parenting … why the worry over Mommy seeing her “like this”?
When I awake to find Patti fallen on the bathroom floor smeared in urine, feces, and menstrual blood and begging “Patrick please don’t let Megan see me like this! … My heart and back goes into action.
This was before the days of our roll-in shower sooo I had to choreograph a hug that got Patti up off the floor and into a shower … supporting both of us while simultaneously cleaning us … so not an easy task.
Our roll-in shower remodel would be months down the road so this hug would sadly have many encore performances.
It was no one’s fault, it’s just my job as MS caregiver to help every family member remain as independent as possible … and oh yeah, kind of like Santa please don’t let anyone see you do it.
Actually menstrual blood and MS caregiving would become intertwined in that Patti’s symptom progression would prevent her from successfully using menstrual products and you can guess who had to have a crash course on buying and applying. ….. This was not taught in any school I ever attended … nor was personal care easily given up by Patti.
Plus looming ahead was our daughter’s menstrual cycle and Mom could not be of much help … this became a Daddy task never mentioned in any parenting book I found.
Fortunately I was blessed by a friend and neighbor who was a nurse practitioner specializing in women’s health. We began to concoct an idea of tricking Patti’s menstrual cycle through lo-estrogen into one menstrual cycle every three months.
Our experiment with Patti’s cycle was showing positive results by reducing her menstrual cycles over the year … Certainly not eliminating the problem but seriously reducing my role and by then we had the roll-in shower and cleaning up was significantly safer and easier.
Living with MS as a family and dependence can be a contradiction in care. With MS symptom progression, my role as caregiver became increasingly necessary because the bottom line is… "Independence" takes support.
Editor's note: We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the MultipleSclerosis.net community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. His heartful writing continues to reach many. He is deeply missed.
How well do people around you understand MS?