DIAGNOSIS – THE REALITY AND EFFECT ON OUR FAMILY

Excerpts from the Book...

“"Loving Kimmy, Year After Year" is the title of the book I am writing. The book shares our story, the journey we have been on, and how it affected Kimmy, me, and our kids.

"Before you have a child, you can't imagine yourself with one. After you have a child, you can't imagine yourself without one!"

A co-worker of Kim's shared that little perspective on motherhood. I would add, that once you experience the magic of having a child, your dreams and goals for that child and for the family you are building can be imaginatively visualized and seen on the big screen of your mind's eye as you dream. Their birthdays, their school events, their first date, the Prom, graduating high school, going off to college, getting married, having kids, making you a grandma or grandpa, well, as you can see, it's a long list of life defining events. For a parent with young kids, especially a mother, there is so much life to look forward to. Kim was able to experience and enjoy some birthdays, and some toddler through early grade school events. As her disease progressed however, she started losing the ability to capture those memories, as she was not able to grasp or comprehend what was actually happening in the moment. Kim will never experience many of the bonding and memory making moments mentioned above, and Collin and Shannon will be forever missing their mom at these events. For Shannon, she will never have memories of her mother "not" being ill.

A parent never thinks of or dreams of dying while their kids are young. It is heartbreaking to imagine the thoughts and feelings Kim must have had after her diagnosis as she looked at her two young children. She knew that they would soon feel agony and loss from watching their mother disappear, and the gut-wrenching pain of watching her die. I can imagine what those thoughts were like for Kim, and I can feel both cognitive and emotional empathy. The helplessness and sense of unfairness she was experiencing had to have led to the deepest feeling of sadness and emptiness a mother could ever experience. Kim's disease was going to cheat her out of all the experiences a mother dreams of sharing with her kids. My tears build just writing this. My heart aches thinking of this.

Collin and Shannon had 'house seats' to a horror show they never bought tickets to, a show they never asked to see or be a part of. As this dark cloud fell over our family, it quickly became apparent to me that the most important thing I needed to get really good at was mitigating potential psychological damage to the kids. My task was to keep the extraordinary, and ordinary. Kim would have her own challenges and I realized that managing her, or helping her through the vast issues she would have on this journey would also be a difficult, yet top priority. For me, as an adult, well, I should be expected to handle and process all of this. There would be a time down the road for me to "feel" how this horrible nightmare was affecting me.

"I am not afraid of dying", Kim said to me one night as we laid in bed. "I just don't want the kids to see me when they don't know who I am!"

"Kim," I replied, "the kids will always know who you are. You kind of got that backwards." "Wait, what?" she questioned.

"I said, the kids will always know you...it's you who won't know them!" "They will always see you as their mom."

Her reaction to my honesty could have been tears or laughter. We all know that the emotions of sadness and joy are very close to each other. Thus, the expression, "tears of joy". I expected Kim to laugh, and laugh she did! We both had a good laugh. Keeping a sense of humor in the depths of despair and sorrow is very important. "Laughter is the best medicine," they say, right? Well, it's so true. Even in the darkest of times, we should welcome laughter and search for moments of joy, if only for some level of balance to the tragedy. Some Ying to the Yang.

This disease chose Kim as its victim. In doing so, it also chose me, husband and father, to be the rock for both Kim and the kids on a journey wrought with heartbreak, despair, and challenges. You could also say that in choosing Kim as the "host body" for its destruction, the disease also chose me, Collin, and Shannon, as targets for collateral damage. When something this devastating hits one member of a family, it hits all members of the family.

Collin was eight years old and Shannon was four when their mom started a seven-month journey of tests and more tests, leading to her diagnosis of Early Onset Alzheimer's disease. The shock, confusion, anxiety, and uncertainty I was experiencing during the testing were normal and expected. An adult is supposed to be able to process and understand these life-changing moments. It certainly is not easy, and each person engaged in this process will absorb it and react differently. A child, however, is a young and innocent child, well, they really don't have the education and life experience to comprehend what they see happening around them. We say that kids are "sponges". They absorb more than we think. They can feel emotions and changes in emotions within themselves and others. Telling Collin and Shannon that their mom was diagnosed with a terminal disease and was going to die was not an option. That would be "TMI" in today's lingo. There would be a better time for that down the road. Actually, there is never a better time for that. However, when that time arrives, Kim would be well down the path of her disease and the task of sharing this devastating news with our kids would be left to me.

How? When? What if I... Maybe there's a book, a video, or something that would help me. Facebook? Well, maybe today there is, but not ten years ago. Through the first three years of researching all the different forms and types of dementia and trying to learn everything I possibly could, I did not find a single story or article about a family dealing with the same dynamics that we were. There were plenty of families with parents who had Early Onset Alzheimer's while their kids were in their late teens or early 20s, like Alice in the Still Alice book and movie. But I could not find one family with a mom or dad experiencing Early Onset Alzheimer's disease with kids as young as ours. This gave me a feeling of being marooned or isolated. There were not going to be any support groups or counselors who had experience with my exact situation. This was going to be a long journey across a sea few people in the world could say they'd sailed. The person closest to our situation was probably Alice, in Still Alice. Unfortunately, the book and its characters were fiction and their problems or issues were a compilation of facts and experiences created by the author, Lisa Genova. Our family is real. Our story is real. We exist, we live.