Gregory, my husband of over 41 years, was diagnosed with dementia, most likely Alzheimer's, in the 29th year of our relationship. He was 55 years old.
We walked the Dementia/Alzheimer's path together for 12 years. He was not a victim of Alzheimer's, but rather, a hero. I might add that we lived as well as possible with dementia, refusing to accept the diagnosis as a "death sentence." Also, I never referred to it as his diagnosis, but rather, our diagnosis.
In some ways, we were relieved when we received the diagnosis, because now we had an idea of what we were dealing with. At the time, though, we did not really understand the nature of the roller coaster ride we would be on for the next 12 years.
Dementia/Alzheimer's is not just a memory problem. It includes cognitive issues as well as physical, mental, physiological, psychological, social and emotional ones as well . The condition is further complicated by the many ways in which it expresses itself, usually differently for each person affected.
The times were not easy, but we persevered and did a good job. I was able to keep him safe, and to support him by helping him be free of worries, responsibilities and fears. I was able to help him compensate for his abilities while always trying to make sure that the respect and communication which had defined our relationship never faltered.
I made sure that our daily life was full, rich and meaningful. Our life was filled with much laughter as well as many tears; joy, as well as sorrow. And above all, it was filled with love.
I had all of our legal arrangements in order. I held power of attorney over Gregory's healthcare and financial matters. Our wills were in place. Being a same-sex-couple, before marriage was legal in the United States, we also had to have all types of special "permissions" in place.
There were many gifts which we recognized while also dealing with the symptoms of our diagnosis of Alzheimer's Disease. We were fortunate in that I was retired; we closed Gregory's business and our time was now our own. Our love continued to grow—we were able to travel the world, enjoy our condo and live in a very active Downtown Evanston, Illinois. We entertained, enjoyed our family and friends, and were buoyed up by our pets with their unconditional love. We were able to simplify our life, only keep the most meaningful parts, and continue to be compassionate with each other, ourselves, and those around us.
I was able to write about our experiences and, in doing so, process my understandings and feelings and share them with others. I took care of Gregory at home for more than 10 of his years with dementia. It was not easy, but it was a joy supporting him and the only thing I could rightfully do.
Gregory's medical and physical needs became so great during his last year and a half, that short of turning our home into a fully staffed 24/7 hospital ward, I was not able to provide for them. I was able to find an excellent memory care facility just ten minutes from home, so I could visit him every day.
Gregory's new sense of community and belonging, the safe clean environment, the delicious meals, the medical support, and just the presence of many people around him were all positive attributes of my decision and contributed to his well-being. I hired a day care worker to support his physical, as well as social/emotional, needs since by now Gregory could not do much for himself.
For the most part, he was happy, content and peaceful in his new life. When problems rarely surfaced at the care center, they were cooperatively and easily taken care of. Now and then Gregory would become frustrated or angry. Once in a great while, he would strike out, but that was more out of his frustration than it was due to violence. He did not complain much and was usually kind and compassionate with me, himself and others.
Alzheimer's: A Love Story, a documentary made shortly before Gregory's passing, has been accepted by more than 90 film festivals both in the United States and around the world. We have won over 35 awards, including two from the American Pavilion at the Cannes Film Festival.
The story, which I believe is a beautiful one, gives you an up-close look at our 41-year love relationship and our 12 years living with Alzheimer's, and distills it into a moving 15-minute documentary. Check out my website for more information.
I think you will agree, as you experience the story that love is love and LGBTQ love is an important part of that. Every love relationship deserves the right to be treated with respect.
Gregory died on Oct. 4, 2015. Great love means great grief. I will always grieve the loss of the love of my life, but that love also carries me forward as I continue to live a meaningful life and support others facing similar experiences.
Whether you are the one who supports and/or loves the person diagnosed, or are the one yourself who has received the diagnosis, the way in which dementia progresses and expresses itself over time can be one of the most challenging, painful, frightening, confusing, and frustrating experiences you will ever encounter, but you can succeed in getting through it.
You will not always be at your best, but if done with love, understanding, kindness, and forgiveness, it can also be a time of renewed love, creativity and many other unexpected gifts.
My goal in sharing Gregory's and my story is to let others know, "You are not alone. You can do this. Take care of yourself as well as your loved one. Don't be afraid to ask for help from others."
To follow Michael Horvich, see horvich.com .
Michael holds his BA in Liberal Arts and Sciences from the University of Illinois at Urbana, additional degree work at the Hunter College in New York, his MA as an Education Generalist with a concentration in Gifted Education from the National Lewis University in Evanston, and an Advanced Certificate in Education Administration and Supervision, also from the U of I in Urbana.
