8 AM and the phone is ringing. A voice said, “I don’t mean to follow my husband like a lost puppy, I need him like never before. I am not trying not to smother him, but I get scared when I can’t remember things. At first, we clung together like we were on vacation in Mexico and had just had a very romantic date. We were holding on for dear life. We went on long walks and held hands – walking so close to each other, we didn’t know were one of us ended and the other began. At night we laid together and fell asleep. I felt so safe. Over time I feel like I am different and he is different with me.” “Is it ok that I called?” asked my Monday morning caller, saying she felt compelled after she heard my Sunday, Dementia Resilience Radio Show and I told her I cared. She was surprised that she truly felt comfortable enough to call and tell me what she was feeling. She went on to say “from the day of the diagnosis, everything changed. Suddenly I am no longer trusted to do things right. Apparently I am the disease.” She asked, “Do you have the diagnosis; how did you know what it feels like when you lose your intellect? You absolutely nailed it!” She went on to tell me her life story about her family, her work, her life, her dreams of old and her new dreams. She also told me what bothers her.
My caller was disappointed her doctor never explained the disease to her. He handed her a prescription for Aricept and sent her on her way. “I am only 67” she told me. “How did this happen?” “Yesterday I learned all about mid stage on your radio show and I finally know why I am so emotional. I get angry and yell at my husband when he seems impatient with me. He actually started to cry when he heard you say that at this stage I really do need help with the microwave! He couldn’t believe it because for 35 years of marriage I cooked all the meals. Now I burn things and he doesn’t understand.” We talked about a few other things that were on her mind. Before she hung up she added, “I want to thank you for understanding. Thank you for guiding us and giving us hope. Thank you for educating us and believing with can get through this with Grace.” It is absolutely MY PLEASURE, I need to THANK YOU, I assured her. I was pleased that she is a regular listener and she feels understood. All I wanted from the radio show was to have a voice to talk openly and candidly about this disease. To my beautiful soul sister and listener of my show, I love you and I am here for you. Keep listening. Keep calling and tell me how you’re doing. I look forward to it! You are Ok! You are still present! You are still the love of his life; AND Mom and Grandma extraordinaire. You are NOT THE DISEASE!
I often discuss stages of Alzheimer’s and try to explain what is going on with the brain so my listeners can try new strategies and techniques and live with RESILIENCE. I want to bring forth new ideas and thought processes and share what I have learned from those with the diagnosis, so they have a voice! I have learned so much from my friends with the diagnosis in terms of how they feel, what they want their caregivers to know and how they want to live. I also know they need us to see them as PEOPLE! Not the disease. They still want those easy conversations, long walks, having fun playing with the dog or cat, even into late mid stage. They want us to talk with them, not around them and not to the person sitting next to them. I feel like it is a true privilege to host a radio show on their behalf and for them. I also speak for the caregiver’s; those who love my friends so much and so well. They need assistance. They need a helping hand. No one ever took a class in high school or college that was specific to the idea that someday, one day, you are going to love a person, like no one you have ever loved before, and a nasty disease was going to rip them right out of your hands. There were no early training guides for this.
For over 20 years I have dedicated my life to helping people with many types of dementia, I see numerous positive aspirations on Facebook and Instagram which are lovely, from well-meaning people. I don’t do that and I probably never will. I talk in truths. I help people communicate. I study these diseases and am trying to be part of the solution. I hope you will too. Our friends need us. We can do this. To the caregiver’s who think they can’t do it, you can, all you need is compassion and some instruction. I got you! I’ve got your back.
I look forward to your thoughts and comments. If you hit your knees or clasp your hands tonight, say a nice word for my caller. Peace.
Jill Lorentz is the President and Owner of Summit Resilience Training, Dementia Education for Caregivers. She is also the Host of KEZW Cruisin’1430am Dementia Resilience with Jill Lorentz, which airs Sunday’s 10:00-10:30 am MST. Jill teaches families and professionals strategies and techniques which help them to feel understood and allows them to relieve stress so they can enjoy their lives while caregiving.
