A Mother‘s Perspective
Dealing with a Child With a Terminal Illness
“Mom, I have been diagnosed with ALS.”
Those are the dreaded words no parent wants to hear especially from their 35-year-old son, Jay Smith, who is married with two young daughters, ages 4 and 6.
“They are giving me 3-5 years to live and there is no cure or effective treatment.”
It was March of 2014 when Jay Smith, a Doylestown native was diagnosed with ALS. I remember that I was out walking and stopped dead in my tracks as the tears flowed. Anything but ALS.
In 2013, my husband, former CEO of the Y, and I, a former CB teacher and realtor, suspected something was terribly wrong. Jay had been slurring his words and having twitching in his arms. He was sleeping a lot -- so unlike him. Jay had always had a tremendous amount of energy, always waterskiing, cooking, building a golf cart, snowboarding. He knew something was seriously wrong. So did we. We sent him to the Mayo Clinic for an evaluation.
A parent never pictures their child having a terminal illness, especially one like ALS, that takes away your body, one motor neuron at a time, eventually leaving you helpless, totally dependent on those around you. “If I could switch places with Jay, I would in a flash,” I told my husband, Gene. But I could not.
Before Jay’s diagnosis, I admit that I did not know much about ALS, Lou Gehrig’s Disease, scientifically called “Amyotrophic Lateral Sclerosis”. It takes away your ability to move your muscles, one motor neuron at a time, your ability to swallow, and eventually ability to breathe. Your mind stays intact, so you know exactly what is happening to you. A cruel and unforgiving disease.
I remember going out to lunch with Jay for my birthday in May of 2014 and he said, “I don’t’ want to be a burden, Mom”. My reply, “This disease is not your fault. Let’s give this disease a good fight.” And we sprung to action.
ALS research is grossly underfunded. It is considered a “rare” disease, not profitable for pharmaceutical companies to pursue research, so they simply do not invest the necessary resources. We immediately opened a Foundation and began raising money for research to the tune of $400,000 which we donated to ALS/TDI, the largest ALS research center in the country as well as Houston Methodist Hospital. They are not out to make a profit, but to find a cure.
And then reality set in. We discovered that NONE of Jay’s caregiving and much of his medication was not covered under his health insurance. Our good friend Nancy Frates (her son Pete started the Ice Bucket Challenge and passed from ALS in December of 2019) said, “Start Raising Money, you’re going to need it.” Great advice which I give to other ALS families who contact me. As I further researched the “Cost of Staying Alive” as we call it, I was shocked to see that it would eventually cost $200,000 a year OUT OF POCKET. Shocking news. It is coined “The Bankruptcy Disease.”
So we planned our first fundraiser. Family, friends and strangers asked, “How can we help?” They could not do enough. A few distanced themselves. Some could not deal with illness.. We needed the help. There was a lot to do.
Jay continued to progress. In 2015, we were forced to close his tech company, Livid Instruments, that he had worked so hard to build. He needed a handicapped van, a $50,000 out of pocket expense, so we braced ourselves. I clearly remember the day that we had to sell his tent camper and golf cart which he rebuilt with his daughter Loghan. Our granddaughter sat on the front lawn as the buyers of the golf cart and camper drove them away crying “Mimi, please tell me we won’t have to sell anything else.” My heart was broken.
Then Jay began falling and choking on his food. At dinner if he put his thumb up it meant it was ok, but if he put his thumb down, it meant he needed help. At times as he choked his younger daughter, Peyton, then 5 years old, would run up and hide in her room or in the garage. It was hard to watch.
At first when we would go to help them, we stayed at a hotel or an Airbnb to give them privacy. One thing I learned is that they needed to do things in their time, not yours, great advice from our friend Marcia whose husband had ALS. And I had to be careful as I tend to be a “can do” and ‘take charge person.” Taking over can make others feel less independent.
As the choking continued, Jay went on a feeding tube. Jay has always had a great sense of humor and since day one, created unbelievable posts that make us both laugh and cry. The day he went on a feeding tube, he said, “Eating is so 80’s!”
Jay began falling a lot and needed a wheelchair. Another lesson I learned is to just listen. One day while driving my granddaughter she asked, “Mimi, mom thinks dad needs a wheelchair. What do you think? I think he’s just fine.” I replied, “I guess your parents will do what is best.” Be careful of expressing your own opinions, I reminded myself. And that’s not always easy.
Fast forward to 2022, Jay is still with us, I remind myself. We have conducted nine very successful events for his out of pocket care thanks to the generosity of family and friends. My husband and I spend about 7 months out of the year working full time on the events. There are days when I feel very sorry for myself, this is not what I pictured in retirement. But then I think about how difficult life is for Jay, his amazing wife Missy and his daughters. And then I kick myself in the pants and tell myself, “Keep on going. Thank God you have the skills to raise the money.” For how long, I am not honestly sure…we are both headed in our late 70’s, but it is keeping us young!
Today Jay is on a feeding tube, suction machine, ventilator and the only mobility he has is his eyes. With his eyes, he communicates with us via his “Tobi” program, continues to inspire and entertain all of us with his incredible posts. We are fortunate to have 5 dedicated caregivers that have become part of our family. And it is not easy having people in your house 24 hours a day. Not only are your dealing with your emotions, but theirs as well. The one person that I have become closer to is my daughter in law, Missy. She is so appreciative of our fundraising efforts and expresses her appreciation frequently. I am not sure how she has manages working full time, caring for Jay, and managing the household. And she does it so lovingly. We are blessed.
We just returned from a visit with them. Sometimes it is weeks or even months before Jay gets out of the house. Gathering all of his equipment, food, etc. is a monumental undertaking, at least 2 days of preparation. But we took him to the beach for two days where he just sat and watched the waves. Jay loves the beach more than anyone I know. Sometimes when I see a little blond toe-headed boy, my eyes tear up, remembering how excited Jay would get each year as we headed to our family camping vacation in Montauk. And we are grateful that we have had him with us this long. His mind is perfectly clear, but his body doesn’t work anymore. I can usually hold back my tears, but occasionally when speaking to others about ALS, just break down unexpectedly. It comes in waves. This is not the future we had pictured for him.
We have found ourselves as advisors to other ALS families and receive a lot of calls, always happy to help them with their fundraisers, find access to clinical trials, equipment, and other resources. Always happy to reach out.
This journey has made us more empathetic and able to sort out what is important, not sweating the small stuff. In planning our fundraising events, we want people to come, learn about ALS and also have fun.