Easter weekend 2007, my Mom’s world – and all of ours – changed forever. She told me, “I think I have ALS. I hope I can handle it with the grace that my sister Jean did.”
Mom was the 4th sibling to get ALS. We lived 140 miles apart, Mom in rural northern Ohio, and me in Cincinnati. For her last 18 months, I drove up every Saturday morning and back every Sunday night so that I could be her weekend caregiver. As I am now the same age Mom was when she was diagnosed (62), it seems impossible that much time has gone by, and yet I can recall with clarity, so many amazing and difficult times we had together.
Mom and I talked every day by phone, and when her speech started to go, I got her a laptop and taught her how to use email. We emailed almost every day – I would share pictures and stories of my work travels to other countries. Mom loved sharing those experiences. When I began my caregiving journey, it was all about getting educated and getting answers. At our first ALS clinic appointment at the Cleveland Clinic, Mom and my stepDad had no questions. I had three pages (small print) of questions. I found myself answering the clinicians’ questions, as Mom was already having difficulty speaking and Charlie was too emotional to answer. That was a role that I would continue to have throughout.
When she went in for the peg tube surgery, they stopped me from going back with her. Two minutes went by and they came and got me. They even took me into the OR, as Mom couldn’t speak. And when I was leaving the OR, a different nurse gave me grief for being near the OR. I told her I was asked to come back to the OR. When I started my weekend visits, my goal was to “do” all I could for Mom and for my stepDad too. No matter how hard I tried to “do” things, I could never fix her ALS.
I would have conversations with God on the way home and I’d cry. At some point, I realized I was approaching these trips all wrong. My goal became to bring my Mom joy. Sure, I continued to do the laundry, fix meals, help Mom with her feeding tube feeds and medications, cut and fold paper towels (to help with excessive saliva), help Mom get a shower, care for her flowers (she was a master gardener). But, my change in outlook made all the difference in how I approached each visit.
Yes, I still cried on some of the trips home, but helping Mom find different ways to laugh and smile, that was what it was all about. We watched the Food Network (yes, Mom loved that even when she could no longer eat or cook/bake) and Hallmark movies. We watched concerts (I would bring up DVDs). I took her to California to see Ellen (her favorite show) before her ALS progressed too far. It was her first time on an airplane too. She LOVED the entire experience! I took her to her favorite gardens to see the seasons, and we took her on drives to see the countryside she loved. We went to the movies and saw “Marley and Me” – and we all laughed and then cried near the end.
One of my favorite winter Saturday night memories… Charlie was helping Mom with her feeding tube and I was sewing light Velcro down the back of Mom’s long-sleeved t-shirts (she had frozen shoulder and could no longer raise her arm). There was nothing on tv (they didn’t have cable), so we watched a 30-minute infomercial where they were selling 50s and 60s music CDs. Charlie and I sang the songs to Mom and she tapped her hand on her leg and we all laughed and smiled. I remember it today, with a tear in my eye, like it was yesterday. In the worst of situations, Mom was present and happy. She never complained, the whole way through her ALS journey.
As an ALS caregiver, I found myself in situations I never dreamed, doing things for my Mom that neither she nor I would have guessed would happen. And all along the way, for me it was all about letting Mom know she was in charge of decisions and it was about maintaining her dignity. When Mom could still hold a pencil and write, I shared with her that when she was ready to go, I was going to be ok. I would take care of my stepDad. And I asked her if there was anything she was concerned about that I could take off of her mind. She wrote one word, my sister’s name. Then we both cried, and I told her that the only way I could help my sister would be if she allowed it. Years later I would get that chance.
My Mom was my best friend and the pain I felt at her loss was the worst I’ve ever experienced. I tell people that I’d go through the caregiver journey again (with all the stress, pain, and weight loss that went with it) if it meant I could have my Mom back. Then I tell them that I wouldn’t ever actually wish for that because I wouldn’t want her to go through that ALS journey again. It gives me peace knowing she’s in heaven with my stepDad, who was such an angel to her.
