I felt I was falling short in a lot of places. You can’t have it all together.
In January 2019, after a year of doctor’s appointments, increased symptoms, referrals and second opinions, Jack Mercz was diagnosed with ALS at the age of 53. In a recent ALS Texas interview with his widow Jennifer Mercz, Jennifer shared “our whole relationship pretty much changed in a day.” Jennifer and Jack had a then two-year old son, and Jennifer added, “I had been with my husband for 10 years and suddenly found myself not only caring for my husband but also my young child.” She recalled moments that included putting her son in the bath and helping her husband in the shower at the same time, and at the end of the day being too tired to even take a shower herself.
Jack and his family battled ALS for more than a year- and amid the COVID pandemic as well, until Jack passed away in September 2020. “Walking on this journey was one of the most challenging things my family has ever endured,” shared Jennifer. Yet, she is ready to share her experience with others. “This community and support are lifechanging; to have support and know that you are not completely alone. Me sharing…if this helps one person that’s good enough for me.”
Jennifer shared that Jack was not very accepting of any kind of help; he wanted to be stronger in every way and help Jennifer at home when he was not traveling for work. Frustration over his declining physical abilities and strength led to anger and depression and Jennifer shared that she “became very standoffish emotionally-clinical with him.” While Jennifer did reach out to ALS Texas and the community as much as she could, she added that “things were moving so quickly that I didn’t seem to have time” to do more-such as accessing our ALS Texas equipment loan program sooner. “The ALS Association delivered a Hoyer lift to our home-it was great, and we needed it. Jack was able to get up (after weeks of being in bed) and sit on the couch with our son.” He told me that he wished we would have had that [Hoyer lift} earlier. In retrospect, she added that she would do things differently in making some “executive decisions” about Jack’s needs; equipment and care that would have also benefitted her. She urges all family caregivers to seek help with caregiving if at all possible-from anyone who is able to help, including friends and family members, and when someone says, “Hey, do you need help?” the answer is “YES! Here’s how you can help me.”
You put yourself on the back burner. Get help, even if just for an hour, so you can eat, shower, and take a deep breath. Support, from my husband’s perspective, was not a priority, but I needed it… 20-30 minutes for yourself is the most important.
ALS Texas offers programming and support for caregivers of all ages. You know when you receive safety instructions before traveling by air, and the flight attendant tells you that in the event of an emergency, you should put the oxygen mask on yourself before helping those around you? They say this because you will not be any good to those who depend on you if you cannot breathe yourself. This applies in caregiving too, and it is very important to remember.
Not only do we have Brewed Awakenings, our caregiver group just for women, or one of our many Connection (Support) Groups throughout the state for both those living with ALS and their caregivers, but we also host workshops such as Running on Empty: Burnout and Compassion Fatigue, The Cost of Caregiving. Often, caregivers like Jennifer share that they just do not have time to attend any of these. In reality, you cannot afford NOT to.
Jennifer was dealing with so many different emotions, and candidly shares that she was “in such a dark place. Added to all of this was an unneeded dose of Mom Guilt. Mom guilt is the feeling of guilt, doubt, anxiety, or uncertainty experienced by mothers when they worry that they are failing or falling short of expectations in some way. Being a parent is one of the most difficult jobs in the world and does not come with a handbook, and surely not a handbook for when ALS enters your life. No book, pamphlet, workshop, or conversation can truly prepare you for what you are about to experience. Jennifer recalled once giving her son a bag of chips and then going to care for Jack. “When I returned the bag was laying there empty, and I thought to myself, I hope my son ate those and not the dog. At times that was all that I had time for.”
Pay more attention to what is real and less attention to what you feel. Feelings can trick you in to thinking you are the worst mom out there. Being level- headed and rational with your thinking will help you to see what is really going on.
When asked how she and their now almost four-year old son are doing today, Jennifer replied, “Grief is a tricky thing. Overall, he is good, and I’m touch and go. Today, I’m good.” ALS Texas walks alongside our families throughout every phase of the disease and we also have many bereavement resources for adults, youth, and children, and hosts a quarterly Bereavement Group.