Guilt is the Price Tag of My Success

The guilt never leaves me. My life-long dream was achieved because of a devastating tragedy that befell my beloved husband.

It was in high school that I discovered I was good at writing. All my essays and writing assignments received “A’s” and praise from my English teachers. I intently absorbed and tried to utilize every lesson and strategy taught in my writing classes. But it was a surprise announcement from an English Department Committee that validated my assumption that I did indeed have some genuine writing talent. I had been chosen as one of a pair of seniors to write the weekly high school news column in our local paper, The Providence Journal. Each week, our pictures, byline, and cooperative reporting piece appeared in the High School News section of the newspaper, which was widely read throughout the State of Rhode Island.

Opportunities opened for me that I had never dreamed existed. Every year, the Rhode Island Legislature held a “mock” session for high school students. A small number of students from each school were selected to be “representatives” and “senators”. At the State House, they participated in the process of writing a bill, taking it through a committee, and every step along the way until it was voted upon and became law (or not). “Mock” reporters were needed to observe and write a newspaper article about this process. As the established high school reporter for the Providence Journal, I was chosen as one of the “mock” reporters. The experience thrilled, enthralled, educated, and fascinated me.

My course was set. I chose Journalism as my college major.

Life happens; things change. By the time I graduated college, I had fallen in love with the man who became my everything. The life we planned together seemed better suited to a career as a teacher than a roving reporter, so I changed my major to Education/English, and we began our journey in life.

We were married in 1970, and by the early 1980’s marriages were crumbling all around us. It seemed that every couple we knew was fighting, having affairs, and hating one another. While marriages were falling apart at an alarming rate, our bond only grew stronger. We were each other’s best friends. We supported each other emotionally, enjoyed each other’s company, and fell more in love and lust every year.

And then, after 36 loving years, the unthinkable happened. My husband developed Alzheimer’s Disease. For those of you who think Alzheimer’s is only a memory disease, I will dispel that notion immediately. It is a Brain Disease that slowly, insidiously, cruelly, destroys every part of the brain. Long before the memory goes, it changes the personality of the one afflicted. It robs them of their judgment and reasoning. It robs them of their “self”.

After 3 decades of living with a loving, kind, supportive husband, I found myself married to a stranger. A verbally abusive, angry, confused stranger who lost the ability to reason, to compromise, to understand. I was dazed, devastated, sick with grief, and had nowhere to turn to express my feelings. I returned to what I knew best. I wrote. And wrote. And wrote. I spent my sleepless nights pouring my emotions onto paper.

By this time, I had joined an Alzheimer Support Group, but no one was talking about the effect Alzheimer’s Disease had on marriages. Most were talking about caring for a parent or grandparent, which bore zero resemblance to the destruction Alzheimer’s Disease had on marriage. Those who were caring for spouses talked about the mechanics of caregiving - dressing, bathing, grooming. I was SCREAMING inside. I thought to myself – I cannot possibly be the only Alzheimer Spouse in the world who feels this way. I cannot possibly be the only Alzheimer Spouse who is dying from the loss of her loving relationship.

I scoured the Internet and there was virtually nothing for spouses of Alzheimer patients. I took the advice from the movie, Field of Dreams. Build it and they will come. I built it and they came.

I developed a website of support and information devoted EXCLUSIVELY to the issues faced by spouses of Alzheimer patients. The cornerstone of www.thealzheimerspouse.com was my nighttime writings, which I turned into daily blogs. They were deeply personal, emotionally vulnerable, and absolutely true. I set up a message board where spouses could discuss and relate to the emotions and incidents in my blogs, express their own feelings, and support each other.

When I launched the site in 2007, social media was in its infancy. Facebook, Twitter, and Instagram were not as pervasive and necessary for marketing as they are today. I didn’t need them. The desire for the support I was offering was so great that the website took off in a week. Word of mouth spread across the globe like wildfire. My members included spouses from the United States, Canada, Brazil, The Netherlands, and England.

The more my husband’s abilities declined, the more content I had for my blogs. My writings were so emotional and relatable to Alzheimer Spouses that my website became #1 of its kind in the world's search engines. Actually, it was #1 because it was the ONLY one of its kind in the world. I responded to the needs of my readers by expanding it to include valuable information on caregiving, finances, care facilities, research – whatever they asked for, I provided.

But it was my writing that was the highlight of the site. It was poignant, moving, and powerful. I exposed every devastating incident that occurred and how I felt about it. The gratitude of my readers was boundless. Spouse after spouse expressed how much help my writing was to them; that it validated their own emotions that they were unable to put into words, and if they did, no one they knew could understand or relate to them.

More opportunities for me flooded in. My husband (while he was still able) and I spoke at Alzheimer seminars about how the disease affects marriage. When he could no longer participate, I went alone. I attended lectures, conventions, and seminars, where I spoke about marriage and Alzheimer’s Disease. For 4 years, I was a Florida delegate to the Washington, DC Alzheimer Forum

where I met and talked with representatives and senators about the importance of Alzheimer funding. I met Maria Shriver, Sandra Day O’Connor, and Senator Bill Nelson of Florida. And my husband declined. The guilt started to creep in.

Accolades for my website and my writing poured in. In 2009 I was a guest on best-selling author (Elder Rage), Jacqueline Marcel’s radio show, “Coping With Caregiving”. In 2010, my blog was named #20 in the top 50 Alzheimer related blogs on the Internet. (https://www.newswire.com/the-alzheimer-spouse-blog-named/77342) In 2010, I was featured on NBC’s series, "Faces of Caregiving" about Alzheimer caregiving. (https://www.nbcnews.com/healthmain/faces-caregivers-disease-tore-through-our-lives-tornado-8c11033379. [Scroll down to the 2nd interview.]) And my husband declined. The creeping guilt was getting stronger.

Up until I met my husband, I had always felt as if my heart was a puzzle with a piece missing. On my first date with Sid, the missing piece fell into place. My heart melded together and was whole, so it was with inconsolable anguish that I listened to him one day, deep into Alzheimer’s Disease, ask me a series of questions. How did we meet? What was our first date like? Why do we have only one child? Where does he live? I felt the pieces of my heart shatter like shards of glass and fall to the ground around my feet. I had achieved my dream of becoming a successful writer, was supremely proud of what I had accomplished, but it came at the expense of his destroyed mind. The guilt settled in and has never left.

Sid’s fate was sealed the day of diagnosis. He was going to die of Alzheimer’s Disease whether I developed and wrote for my website or not. Looking at it in a positive light, I can say that I made the best of a terrible situation. I used his illness as a platform to help thousands of people.

Would I have achieved my dream of becoming a writer if he had not developed Alzheimer’s Disease? Would I have found another outlet for my writing, for my true self as a writer to shine through? I like to think so, but I will never know, will I?

As I learned through the years that I would never get over his death, that I would just have to learn how to live with it, I have also learned that I will never get over the guilt of achieving success on the back of his destruction. I just had to learn to live with it. It has become part of who I am. But through it all, I am proud that my writing helped so many who desperately needed it.