Caregiver’s Tipsl By Robin Schlinger When my beloved husband was diagnosed with ALS, we did not know what to expect. We were so frightened, but my brave husband told me that we live in New York and we would find the best doctors. This was true, and yet, even the best cannot cure this horrible disease. People told me not to cry in front of Peter, but how could I not! My mother gave me good advice. She said that if I did not cry, then it would not be me. It was then that I decided to live our lives as if we had forever. Peter would tell me that we had forever and a day, and I believed him. My goal was to let my courageous husband be as independent as possible. To do this, I had to be creative. Peter began wearing braces on his legs, and he was able to walk much better. Since his hands were affected by the disease, he had trouble pulling the pants down over the braces. I took all his pants to the dressmaker and had her make 4-inch slits in the inside of the pants. This was not noticeable, and yet, it made it so much easier for Pete. Peter never complained, so it became my job to notice when he was having trouble with a task. Buttoning his dress shirts was very difficult. He was not ready for the buttoning tool, so I snipped the extra stitches on each of the button holes. This little trick gave Peter many months of independence, when he was getting dressed. To watch my husband pull up his socks would just break my heart. He was not willing to let me help him just yet. When we were on a trip to Florida, visiting my parents, my mother and I went to the flea markets and asked sock vendors for easy pull up socks. As it turns out diabetic socks do the trick. Another trick was a stretch band for his watch. We purchased a portable hydraulic lift which sits on a chair and amazingly helps you lift yourself up. This made it possible to visit our family. We also purchased a Lazy Boy electric lift chair and a regular chair with the matching fabric for me. I wanted our home to be as normal as possible, and whenever feasible, I made every effort to put medical equipment in closets and take it out only when necessary. Peter wanted to be independent for as long as possible and I wanted him to have his dignity. I was always a creative person, and now I channeled my creativity to make my husband’s life a little easier. I had a lot of help. My sister said that people really want to help, and she was right. Peter’s friends at work were with us every step of the way. Our family and our friends never left our sides, and we let them be with us. Giving my husband the sense of ongoing independence, which he so deserved, made our life together as normal as possible. People called me a caregiver, but I never felt like one because my husband always took care of me too. My wonderful husband was the love of my life. Additional helpful hints: • Blocks to lift the bed and make it easier to get in and out of bed. Bed Bath & Beyond had them for about $25 • Shoes – with Velcro so that he did not have to struggle to tie his shoes. Taking the innersoles out of the shoe gives a little more room for the braces. • Jacket that closed with velcro so he didn’t have to use the zipper. • OXO makes large handled utensils and a spoon that has a lip so that nothing falls off, which make eating much easier. • Pilot makes a gel pen called Dr. Grip which enabled Peter to write much more easily. • Sweat pants with Velcro pockets were the most comfortable. • Safety bars in the shower • Light switch enlargers that fit over the existing light switch for easy turning • First Alert Service – Peter wore the alarm around his neck in case he needed help when I was not home. This was for my peace of mind.