I Didn’t Sign Up for This . . .

CHAPTER 1

The Day Your Life Changes Forever

Perhaps you saw the early signs of dementia in your loved one but refused to acknowledge them or, you were sharply acute and noticed the definite cognitive changes in your loved one immediately – it doesn’t matter. What matters is that your life changed forever the day you realized that your spouse or loved one had dementia and your world would never be the same again.

For me, it was a time of mourning, a time of death – death of our future plans, death of our “golden years,” and death to our various relationships throughout 40 years – first as boyfriend and girlfriend, then lovers, and then as marriage partners. Without memories, how could these various relationships still exist? Without conversation, how could they be real?

“I didn’t sign up for this,” I lamented to myself. I had imagined Mike and I growing old together, enjoying the fruits of our labors of employment over decades, saving for and paying off our family home. I had imagined wonderful, shared moments spent with our grown children and grandchildren. It shocked my mind. What happened? It wasn’t supposed to turn out this way!

You might say, “Well, you did sign up for it when you married your husband on Oct. 22, 1977, and repeated those vows, in sickness and in health” And in my heart, I knew that was true. I would never desert my husband in his time of need, but it didn’t mean I would have to be happy about this horrible disease robbing us of our dreams. But in my usual manner of dealing with life’s inevitable ups and downs, I tackled this project with all the gusto I had. This book is my personal story of how I survived as a dementia caregiver, and I am writing it to provide some words of advice, tips, and lessons-learned to other people who find themselves in this exclusive “club” as dementia caregivers. It was a six-year journey that I wouldn’t wish on my worst enemy, but by the grace of God, I survived and even thrived to be where I am today You can, and will, too.

I remember one time when Mike (my husband, Mike Monroe of Westmont, IL and then Lake Worth, FL, now deceased as of 7/22/18) was in the early diagnosis of dementia and he was sitting in an easy chair in our living room, looking totally normal. But it was at this moment that I realized that our lives would be changed forever, and I was filled with a deep sense of loss. I’m not a big “crier,” but I could see everything that we had hoped for in our future simply slipping away, and I was filled with a deep sorrow and tears flooded my eyes. I said to him, “Honey, I’m so sorry we’re going to have to go through this. It’s not fair and we didn’t deserve it. I can’t say goodbye to everything we have built together. I don’t want to say goodbye to us,” and he just looked at me, blankly, as if he didn’t realize or understand the ramifications of what he was going to be going through. Either he was dealing with it privately, or this hideous disease gives the sufferer one blessing – to not understand fully what exactly the future holds for them, and how this disease will eventually reduce them to a hollow shell of their true inner person. How this disease will turn their life upside down, inside out, and take them on a rocky journey with little or no control over situations or outcomes. How this disease leaves a caregiver spent, empty, angry, sad, forlorn, and wondering when or how she can ever go back to living life fully again.

Let me take you back to the day I met Mike. It was the 4th of July weekend of the summer of 1976, and the entire country was celebrating the Bicentennial 200 Year Anniversary of our country. We had both graduated from college by then – Mike from Southern Illinois University and me from Northern Illinois University. The 70’s were the best years to be alive as a young adult — people believed in peace, love, and good times Raggedy cut offs, skimpy bikinis, and crop tops were the outfits of the day. I was living in Chicago at the time, working at an ad agency as a copywriter. Two of my close friends had graduated from SIU and were mutual friends of Mike, who was having a big 4th of July weekend-long party with his large group of friends. We piled into an old VW bug and headed the 7 hours south to SIU, making jokes about meeting our future husbands, playfully speaking in girlish voices with Southern accents. When I met Mike, I guess you could say it was love at first sight. Mike and I were sitting next to each other that night on the stairs of an old college rental home watching the fireworks. When he put his arm around me while fireworks were literally going off all around us at the same time, I felt so comfortable, like this is where I’m supposed to be, and this is who I’m supposed to be with.

On Oct. 22, 1977, Mike and I were married, and we moved to Lake Worth, Florida, in 1979 after one of Chicago’s worst winters, the Blizzard of ’79. As young newlyweds, we shared so many experiences, from temporarily living in the “Tip Top Hotel” in Florida for weeks until we purchased our first home, eating one of our first homemade dinners of a simple roasted chicken on makeshift chairs and a round wooden crate table, and driving to Louisville, Kentucky, in a pick-up truck while I was pregnant with our first child, Michelle, to see Mike’s favorite sport event of all time – The Kentucky Derby. As we became young parents, our bonds grew, from tackling the usual parenting dilemmas like night-time feedings, children with chicken pox, and never seeming to have enough time to do it all. We didn’t go out much – we were living on very modest salaries – so our family times were spent with home-cooked meals, church events and trips back home. As our family grew to include a boy, Mark, and two more daughters, Marcie and Melody, we moved to an acre of land in our same community and had our “Monroe family home” built to our specifications. We were known as the “M & M family” and we were living the “American Dream,” and our children were all involved with school and sports activities such as horseback riding, hockey, softball, baseball, basketball and volleyball. We had many, many wonderful friends and neighbors with whom we shared many celebrations and parties, including our signature, legacy event – our huge, annual New Year’s Eve parties.

Those moments of a long-term marriage are like the woven threads of a tapestry; they create a bond so strong that we felt nothing could come between us. Our marriage wasn’t perfect; it was filled with ups and downs of various trials and tribulations. Nothing tested the strength of our marriage more than when we lost our firstborn daughter in 2004 in a tragic car accident; she was just 22. Many marriages break up after a loss as deep as this; however, we vowed to each other and to our children to remain strong as a family as a legacy to Michelle, because that is what she would have wanted.