I have been dealing with my wife's Alzheimer's disease (AD) for more than eight years. During that time, as is true for all AD caregivers, I have had to make many transitions in my life. Three of these transitions have been life-changing.
My first major transition began in June of 2009 when Clare, who had just turned 63, was officially diagnosed with early/young onset AD. I had already been dealing with her "undiagnosed" AD symptoms for more than two years, but suspecting she had early stage AD and being told she has a terminal illness with no hope of effective treatment or cure are two different things. Within two more years, those worrisome behaviors seriously worsened and new symptoms appeared. Our lives were changing quickly and dramatically, and our wonderful early retirement years came to an end. My daily time was now consumed by my role as Clare's 24/7 caregiver.
My second major transition began in September of 2013 when Clare was placed in the dementia unit of an assisted living facility. Clare's placement basically ended our wonderful marriage, but I wasn't ready to accept that reality. I experienced a lot of sadness and loneliness, including some brief periods of depression, for nearly two years. I visited Clare every day because we missed being with each other. My life changed significantly as I learned to live as a "single man." My daily time was now consumed by my role as Clare's advocate at her assisted living facility.
My third major transition began about two months ago. Clare was still very happy to see me each time I arrived to visit. If not taking her out, we'd sit together cuddled on a couch in a lounge and Clare, comforted by my hugs and kisses, would tell me she loved me before falling asleep in my arms. There was no conversation anymore. If I asked Clare a question, she'd usually respond with words that made no sense. I had to stop taking her out to the beach, park, and even most restaurants because we now needed to be near a separate handicapped restroom so I could accompany Clare and change her Depends when necessary.
Clare still recognizes me, knows she loves me and knows I am someone who loves her, but she is not always sure of our relationship. She tells me that I am "such a good man..." or, lately, "such a nice lady..." sometimes repetitively asking, "Can you help me find my husband?" When I remind her that I am her husband, she says, "I know that..." but, seconds later, often asks me the same question. I'm told that only minutes after I've gone home, Clare starts asking if her husband is coming.
Last month, our son made me realize that whereas he had already lost his mother to AD, he was losing his father as well. In his words, I was "defining my life" through Clare's AD. Our daughter was echoing similar concerns about my life being totally consumed by what was happening to Clare. In my heart I knew they were right. So, despite marking 48 years of a wonderful marriage this past June, earlier this month I "said goodbye" to Clare in my heart. I was determined to place the incredible sadness and loneliness of these past two years behind me and move on with the rest of my life as a single man.
For the past two years, I ate almost all of my meals at home, by myself, except when taking Clare out to eat twice a week. I am now trying to go out to eat each week at least once by myself and once with others. I had been in one weekly bowling league these past two years, but now I am bowling in four weekly leagues. After refusing to travel anywhere these past two years because that would have meant not seeing Clare, I am now visiting our son and his family every few months. (Our daughter and her family live near me, but our son lives nearly 800 miles away.) I am now even open to female companionship should I be fortunate enough to find another special someone.
I will love Clare forever and will, whenever possible, continue to see her daily. I will continue to wear my wedding band, proudly, for as long as she lives. But I have accepted the reality that, although we are still married, for all practical purposes I am already widowed and must start living a fuller life without Clare. Despite the many tears shed while coming to this decision, I am feeling a lot less stress now. I have gained 80 pounds since dealing with Clare's first AD symptoms, 20 of those pounds gained just within the last two years. But since making my decision to move on a few weeks ago, I have stopped eating "comfort foods" late at night, and have lost 15 pounds. I have also been sleeping a lot better in recent days.
Moving on is often easier said than done, and caregivers cannot move on until they are ready to do so. I was not ready until this month. I also know that a fourth major transition still lies ahead... when Clare eventually succumbs to her AD. But I've already grieved and mourned enough these past two years. For me, now is the time to move on.
If you would like me to respond to questions or comments about this article, please email me directly at acvann@optonline.net. All of my columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann. You can learn more about my journey with Alzheimer's and read more than 40 of my previously published articles in caregiver magazines, medical journals, and in major newspapers at www.allansvann.blogspot.com.
My next blog post will be in 2 weeks. Tentative title... "Should Doctors Withhold an Alzheimer's Diagnosis?"