The Matriarch of My Family – Living with a Progressive Disease

How my mom lived with Parkinson's Disease.

When faced with disease or serious illness, most people fight back by holding onto a list of needs; I need to live for my spouse and children, and there’s so much more I need to accomplish. But, what about people who are told they have a terminal or progressive disease? That, I recognize is a personal decision; one I hope the individual makes after receiving a reliable medical diagnosis, researching the choices, self-reflection, and a discussion with a support system of family and friends. The final decision, again, is unique for each individual; and, I am not questioning what is right or wrong. I simply want to write about my mother’s choice to live.

 

My mom was diagnosed with Parkinson ’s disease. The last few years of her life she was slowly robbed of the ability to tend to all of the daily activities we take for granted, such as dressing and feeding herself. She needed help to get up, walk, and sit down. Someone had to bathe her and help her in the bathroom. She needed someone to feed her. There were days she couldn’t talk. It’s upsetting to read about, even more so to watch a loved one experience.

 

The prognosis, alone, is enough to cause depression; the fact that the disease and medicines caused her to sleep most of the day was also upsetting. Yet, every day of her last, debilitating years, my mom would be dressed, fed, and seated on the couch. True, most of the time she was asleep, seated on the couch, but she never got into bed until nighttime. 

 

My mom met daily needs, but needs were merely a means to an end; her true calling was to fulfill her purpose, which she selflessly embraced �" she was our matriarch. No, you don’t have to be the Royal Family or the Kennedys to have a matriarch, just be blessed with a competent, strong woman. A woman who accomplished a great deal in her own right, while being a supportive partner, a nurturing parent, a beacon of strength, the glue that kept us together.

 

It started with the words, “I do,” followed by the addition of three kids, and a house she turned into a home. While the kids were young, mom worked as a bookkeeper to help dad pay the bills, treat us to family vacations, send us to summer camps, and expose us to a cornucopia of activities. When we were older, mom returned to school to get both her undergraduate and graduate degrees to begin her career as a teacher. And, while we were grown, we still had much to learn; mom was our sounding board when we had choices to make, a compass to point us in the right direction, a rock when we needed support, and front and center cheering when we succeeded.

 

Mom’s reach stretched way beyond the immediate family. She made weekly visits to those that were home-bound, visited the sick in the hospital, opened her home for those that needed temporary housing, and set a holiday table setting for every member needing a place to belong.

 

Along with her career and family commitments, she created a social, active, and memorable life with her husband; they were on the bowling team, co-chaired Temple clubs, traveled with family and friends,  and always set aside each Saturday night for date night. Mom also had her own hobbies; she was an avid reader, enjoyed crossword puzzles, knitted, and played weekly Mah- Jong.

 

When dad was ready to retire, mom was still going strong. She left her position as a full-time teacher, but continued to substitute every day. It was on one of those days that mom faced her first tremor, and her subsequent diagnosis of Parkinson ’s disease.

 

Her first loss of independence came when she could no longer drive. Each year it was something else. She stopped working, couldn’t grocery shop, found it impossible to focus on hobbies, couldn’t stand long enough to cook, and her social life was limited. Her body would no longer cooperate, yet she was sharp as a tack; this is what helped her to remain the matriarch of our family.

 

Mom didn’t give up, she simply adapted. Instead of cooking holiday meals, she supervised the catering. Visits were substituted with telephone calls. And mom and dad’s date night was the two of them seated on the couch every afternoon, holding hands, talking, and watching television. And, she checked in daily with her kids, and later her grandkids to make sure they were okay.

 

Her final days were spent in true matriarch style, surrounded by family. She has since passed, but is forever present. I can still see her smile, hear her belting out her favorite tunes, and bask in the strength, determination, and love that she showed her family by the way she lived each day of her life.