Employees Share Their Experiences Caring for Loved Ones With ALSBy Jenny Craig
ALS is a cause that is near and dear to the Jenny Craig Family. We are partnering with Augie’s Quest to ‘CURE ALS this October 2017’ by funding ALS research to bring us closer to effective treatments and eventually a cure. YOU can make a difference. We're sharing two employees' experiences in caring for a loved one with ALS. To donate to ALS, please visit here.
By: Heidi R., Jenny Craig Director of North America Sales Center
My mom was diagnosed with ALS on March 15th, 2016.
I knew so little about this disease, only that it was a death sentence. The best advice I received early on was “become an expert on this and stay one step ahead of it." And so I did. I learned that most of the medical community knows very little about this disease because only about 6,500 people a year are diagnosed.
I found that society knew nothing of this disease except for a celebrity-endorsed ice bucket challenge. So many people all over social media dumped freezing cold water on themselves and donated money, but still didn't really know what it was.
ALS destroys the body's muscles and leaves the brain perfectly intact, fully functional. As her body slowly died, my mom told me she felt her nerves ‘popping’, her muscles ‘burning’ and it was very painful. Her neurologist told her that unfortunately, this was ALS running its course. This pain continued and worsened every day.
Within 3 months of diagnosis, she lost her voice and we only talked through texting after that. By month 6, she lost her ability to swallow any food and had a feeding tube surgically implanted into her stomach. Her hands became so weak that every day, I would grind up her medications and food and then feed her through a tube. I did this before work, when I ran home for lunch and every night for dinner. I helped her go to the bathroom, take a shower, everything. She was so embarrassed. According to the state, she wasn’t ‘bad enough yet’ so she didn’t qualify for any type of home care. (How bad did it have to get?!?!) I did this every day, every weekend, I rarely left my house. Meanwhile, I still had a family of my own to care for and provide for financially and emotionally. I came to work every day, no one really knowing I was running on fumes. Doing all of this was the most difficult thing I had ever done.
My mom never let ALS get her down, I never talked to her like she was dying. Together, we fought through red tape and ignorance to get her the support she needed.
In April 2017 her diaphragm started to fail and on April 9th, my mother lost her battle with ALS. She passed at home with me by her side, from beginning to end. I was her voice, her strength, her daughter.
She survived 13 months from diagnosis.
In all, I have learned that ALS isn’t an untreatable or even an incurable disease, it’s just an unknown one and therefore, an underfunded one. I will forever be a warrior fighting the front lines for a cure on behalf of my sweet mother, Linda and the 1,000’s of others fighting this fight.
The money we raise as a company, will fund research for ALS that will eventually lead to a treatment and possibly save someone’s mom, dad, husband, wife or child and I am all in for that.
To donate to ALS, please visit here.
By Alan Blake, Jenny Craig JDE Consultant:
In October 2012, we were sitting in the exam room at our neurologist's office as he finished the EMG (Electromyogram) test that measures how well the nerves conduct electrical signals. He was kind, but very straightforward, there was little doubt that my wife Patty had ALS. The words were chilling. He left us alone for awhile. We had been on this journey for about 18 months already as Patty had gone through test after test to try and figure out why she was tripping and falling and why her legs were getting weaker. Other diagnoses had been made and other therapies had been tried, but to no avail. In that exam room, we hugged and we cried and I think I said that somehow we will get through this together. What we did not say, but it was in both of our minds, was that we knew this was a death sentence.
Our road ahead was difficult both from her aspect as the person with ALS and from my role as caregiver. Patty passed away in May of 2016 but in those four years, we both changed as individuals. After 38 years of marriage, we became closer than ever and we depended on each other more than ever. A very important part of Patty's coping ability was her gift of writing. She started writing a blog in early 2012 before diagnosis and continued up until about two weeks before she died. In August of 2014, the Ice Bucket Challenge took place and Patty wrote about her feelings in this blog entry: http://alsn.mda.org/blogs/buckets-hope
She finished the entry with this uplifting passage, “Today I feel drenched in buckets of hope. Hope that ALS will someday be just a chapter in history.”
Edited by Kari - Jenny Craig