My mom, Jameszetta, loved attending church and being with her family and friends. She supported her kids and grandkids by attending graduations, dance recitals, basketball games, soccer matches, swim competitions, talent shows, etc. When the grandkids got sick and the parents needed to work, off to Grandma’s house they went. Like magic, they were better. Our parents’ home was the one place where everyone assembled after work, the weekends, holidays, guests coming from out of town, etc. My parents welcomed everyone with love.
Our dad, Celester, passed away unexpectedly in 2012. This was soon after my parents celebrated their 50th wedding anniversary. Mom was not the same after Dad died. To let her know how special she was, we hosted a Mardi Gras themed 80th birthday party in March 2013. She had a really good time and demonstrated her New Orleans roots by doing the 2nd line dance.
Shortly thereafter in the same year, we became really concerned about her because she was falling and her speech was starting to slur. We went to different specialists, including several neurologists. They concluded that our mom was depressed because of my dad's passing. We were thrilled that the doctors could not find anything medically wrong, but we were confident that she was suffering from more than just depression so we kept going to see different specialists.
Our mom complained about a thick mucus build up in her throat at night. We thought it was allergies. Later, she fell outside of her car and could not get up. A neighbor drove by and saw her sitting on the ground in the drizzling rain. She helped her to the house. We visited more doctors and they thought that the fall was attributed to her arthritis. My mom was tired of us taking her to different doctors so we took a break for about 1.5 months. The reality is that we didn't know what else to do because her doctors could not find anything medically wrong with her.
Mom began gagging on her food and having breathing difficulty. The mucus started getting thicker. Mom said that most of her food tasted bitter and she did not enjoy eating. She has lost 60lbs. Mom’s speech started to slur subtly in 2013.
It is now June 2014 and Mom was much weaker. She attempted to back out of the driveway and hit the lamp post because she couldn’t put her foot on the brake fast enough. Mom agreed not to drive until we found out what was wrong. After falling again in the house and unable to get up on her own, she agreed to be admitted to the hospital. We took her to the Georgetown University hospital emergency room so they could run several tests without the need of referrals. Some of the same tests were run previously. The results were different this time. The doctors at the hospital determined that mom was suffering from the Bulbar Onset of ALS.
ALS is an acronym for Amyotrophic Lateral Sclerosis. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It is hard to diagnose and there is no cure. Eventually, people with ALS lose the ability to initiate and control muscle movements, which often leads to total paralysis and death within two to five years of being diagnosed.
By 2015, Mom was unable to speak at all and needed to use a dry erase board to communicate. Her lower extremities became weaker as the disease progressed but they didn't hurt. Eventually, she struggled to write and resulted in pointing to things until we guessed what she needed or was teaching us. Mom could no longer eat and relied on a feeding tube for nutrition. Mom labored to breathe more each day and quickly became dependent on a CPAP machine to assist her.
I thank God every day for my four amazing brothers and our amazing spouses. In order to make my mom as comfortable as we could, we each committed to “an evening of love” with mom and rotated the weekends. We also employed 4 amazing comfort care specialists. They rotated 24 X 7 shifts to be with our mom at all times. We were also blessed with the love of family and friends that came to visit with mom. This allowed mom to remain in her home.
We installed chair lifts so mom could get upstairs. After a while, she could no longer get on the lift so we turned the living room into a suite for her. Once we moved her downstairs, she never went back upstairs. This silently crushed her spirits.
Our mom passed away in 2015, two days after her 82nd birthday. Mom remained mentally sharp as a tack through to the end. Her faith in God was strong and she coped with the disease with dignity and grace. ALS is usually diagnosed at a younger age. We praise God for my mom's 82 years and mom never complained of being in any pain.
Prior to my mom’s illness, I knew very little about the disease. We joined an ALS support group. That group helped us to cope and get access to resources needed to manage mom’s care. Unfortunately, all of the patients that we met in that group have passed away but the support for new patients and their care givers is still available as a result of the ALS Association and charitable donations.
There is an ALS walk-a-thon in Washington DC on October 14th. I will participate virtually. My brother, Ricardo, and sister-in-love, Alita will be walking. I started a team called 'Team Jameszetta'. If you'd like to participate and/or donate, please click on the link and search for ‘Team Jameszetta’. Thank you for allowing me to share my mom’s story. It is therapeutic for me and enables me to transfer my pain to a purpose.
May God Bless everyone suffering from ALS and the care givers called upon to help them. I pray for an understanding of what causes ALS, a means to prevent people from getting it, and a cure for people that have it.
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