What Love Looks Like – Family Caregivers Month

In the summer of 2022, several months after my husband’s legs didn’t seem to work anymore, we learned that they suspected he had ALS.  I recall one day, soon after I went out shopping, I suddenly felt lightheaded and had to sit down. It was likely low blood sugar, and after I had something to eat, my first instinct was to call him to come get me. Then it suddenly hit me; he would never again be able to help me, and I had a minor panic attack. But knowing that his body was failing him, that he was terrified, and that he needed me to be the strong one, helped banish all negative thoughts. That was the day I became his sole caregiver and protector for the next 22 months, helping him make the most of the time he had left.

The first thing I learned was what a fierce advocate I would become. I quickly identified a clinical trial in Manhattan that seemed to be a great fit. I reached out to them directly, and he was accepted to the year-long trial. Their team was so amazing and supportive. It gave my husband hope and something to look forward to. When a rehab facility he went to after a fall would not commit to following his clinical trial medication protocol, I threatened the director to take him home that day, so he relented. When his blood pressure was dangerously low, I told them to stop giving him the medication causing the problem, and they did. My husband was so grateful that I always had his back and fought for him. But when someone you love is sick, it just becomes second nature. In many ways, it’s like the protective instinct one feels for a small child who can’t protect themselves. 

ALS also required a steep learning curve, and I had to learn to quickly adapt. My first call after his diagnosis was to ALS United Greater NY, and they became my lifeline. Their Zoom seminars were so informative, covering various themes including travel (go sooner rather than later; call the airlines and hotels in advance for help), legal issues (how to protect yourself), ALS research (study findings), and so many other topics. We both found it helpful to be in contact with others who had the same challenges and learn how they were coping. We didn’t feel so alone, which was a huge help, particularly as many friends and family disappeared. With a relatively rapid progression, I spent many hours online ordering products for the next “phase” of the disease. I arranged voice banking while he could still speak clearly, borrowed several items from the ALS United closet, and got a Hoyer lift. I learned that while I’m a very strong woman who can do a great deal on my own, I couldn’t do it all, and reaching out for help was what helped me get through it. And for those who did help me, I will be forever grateful.

I learned that in order to take care of someone else, you first have to take care of yourself. Sleep became elusive, and I was always up until 3 am, and then woke hourly until 6 am to check on him. But you have to make time to sleep to remain clearheaded, so my son gave me a calming meditation app to help me sleep. I had to be sure to eat well to maintain my strength, and I made it a priority. And because the physical demands were increasing, I went to physical therapy at the same time he did, so they could teach me how to lift or move him so I didn’t hurt myself, and I practiced strengthening exercises. In many ways, it reminded me of becoming a new mother after having a C-section when I was physically and mentally exhausted and in pain, but I got through it.

My husband passed away two and a half years after his first symptoms appeared, and 22 months after diagnosis. The disease progressed quickly, and not only included physical challenges, but cognitive decline as well. He didn’t know who I was in the end, nor our son. When my husband died, my doctor called to convey his condolences. He knew what I had gone through and told me that, as a caregiver for someone with ALS, I had to learn how to work in an emergency room setting, overnight, and without training. It certainly did feel that way, but I did get help along the way. I learned that while it was a heartbreaking journey, I was able to bring some hope and joy to his life, managing several trips to California to see our son and be uplifted by nature’s grandeur, and a 70th birthday family trip to Key Largo so he could bask in the warm sunshine, sit under swaying palm trees and smell the ocean air one last time. My biggest takeaway from being a caregiver was that when I learned of his diagnosis, it gave me profound clarity, and I was able to focus on what was most important. I was given the privilege of helping someone I had loved for 44 years face their final days with grace and dignity. I was grateful for the chance to be the one to care for him and show him how much he meant to me. It gave me a sense of purpose, and after he was gone, it helped with the grieving process and taught me how to live on my own. I had kept my promise to be by his side throughout his journey. That’s what love looks like.

Patrice S.