In the summer of 2018, I was so pleased to see my husband Peter starting to lose his tummy, his clothes fit much better. I was proud of him. Shortly after his speech was slurred, has he had a stroke? After a visit with our family doctor who had commented that Peter did not have a stroke followed by comments one being he didn’t think it was ALS. I Googled ALS only to read that Peter had many of the symptoms. This was followed by visits to Specialists at the Kay Clinic and the diagnosis of ALS and my Peter would probably have two years to live. We were both in shock.
We were then referred to the ALS Society for support. We were overwhelmed with what was offered from personal counseling, equipment, support groups, referrals, and just about anything we needed. The scooter, hospital bed, bath chair, walker, etc were tangible items but the emotional support (and the many hugs) helped us tolerate this nightmare we were experiencing.
Our lifestyle had changed dramatically from the busy life of travel and leisure as retirees to one of the medical appointments, walks with Peter using a scooter (our grandkids loved this), and more staying at home. As the disease progressed it meant tube feeding, machines in our bedroom, a walker, Peter losing his ability to swallow, and speak, but he could always communicate via an app on his cell phone. The adjustment that I dreaded but became a reality was the hospital bed. Being married for 52 years we had to face the fact that we could no longer share a bed.
The positive was my good health so I could care for Peter and he could stay home until the end. I helped him shower, massaged his legs and feet with lotion, helped him dress, help with his feeding, and assisted in any outings. Each morning Peter could wash, brush his teeth, shave. We both experienced the continued intimacy with the personal care I was able to give him. This was big for both of us.
As I write this it is 4 months to the day that our children and I were with Peter at home as he passed away. Because he could not speak he shared with us 3 songs on his tablet, his way of saying, all is okay, I am ready, I love you and goodbye. It was so hard and continues to be, not to have this wonderful husband, father, and grandpa in our lives.