Documentary Thank You and General Comments

The documentary screening in California was not about me. It was about the talented crew of students who put it together and about the experience itself for all five of us. But I decided that I wanted, by way of an "acceptance speech," process my thoughts and thank the kids, their instructor, and the university for their work and efforts and job well done.

Let me introduce myself: I am Michael Horvich. I am a man, I am 70 years old. I am a 40+ year life partner to Gregory Maire. I am gay. I am always a son although my parents passed five and ten years ago, I am a brother, I am a brother-in law. I am an Uncle and a Great Uncle. I am a family member, a friend, a colleague, an acquaintance, and a neighbor.

I am an educator, an acting extra with The Lyric Opera of Chicago, the curator emeritus of Michael's Museum: A Curious Collection of Tiny Treasures which has been a permanent exhibit at Chicago Children's Museum since 2011. 

I am a book binder, a photographer, a poet and a writer. I have been maintaining a blog about Alzheimer's which has received over 1070 posts with close to 50,000 hits.

As Gregory's abilities and communication skills slowly disappeared due to Alzheimer's Disease, the ability to talk about things, come to closure after an argument, make decisions together, and much much more slowly disappeared. Over time I found myself turning to my computer and my writing to help me be better able to organize and process my thinking, so I decided to sit down and write this speech of gratitude. Please allow me to read it to you.

First I want to give thanks, then I want to talk about dementia and how it affects a person, next I want to briefly look at Gregory and my being a same sex couple, and finally I will tell you my wishes for the future.

I am grateful to Chapman University, The Dodge College of Film & Media Arts, The Dhont Family Foundation, Professor Sally Rubin, the Documentary Crew Gabe Schimmel, Monica Petruzzelli, Amanda Le, and Riani Astuti for committing Gregory and my story to film, and for sharing it with you.

However, there are at least 5 million other stories out there about people living with Alzheimer’s that are just as moving, just as loving, and just as amazing. Each of those 5 million affected by Alzheimer's Disease are in their own unique way a hero and each person who loves and/or cares for the person with Alzheimer's is a hero as well.

Alzheimer's is not just a memory loss issue as many people think. If you look at who you are, what you think, what you are able to do ... you should understand that you are the sum total of every experience you have ever had, everything you have seen, everything you have been told, and everything you have learned.

You are the integration of all that. You are the connections your brain makes to guide your daily living activities, thoughts, goals, aspirations, and emotions. A person with Alzheimer's has begun the process of dis-integration regarding living, doing, thinking, feeling.

Let me give you an example. You realize that you are thirsty. To take a drink of water you are monitoring dozens of pieces of information. You reach for the glass without knocking over, you pick it up and hold it without crushing it or breaking it, you lift it towards your mouth without spilling, you place it on your lips without really being able to see your lips, you tilt the glass taking in some water without it dribbling down your chin, you know when to stop, you swallow and savor the cold chill of the water. You tilt again and take a second or third drink until your thirst is quenched.

The person with Alzheimer's may have no difficulties with taking a drink of water today but this might change tomorrow. It may change over time or it may change daily. One day it may be easy to drink, another day fairly easy, and another day difficult. Some days you cannot drink at all. The next day you may, or may not be able to drink easily or with difficulty. Eventually you will not be able to help yourself to that drink at all.

As the disease progresses, you not only cannot get a drink of water for yourself but slowly you forget how ask for that drink of water. You depend on others to keep you hydrated. Slowly you are unable to maintain the ability swallow, so you choke and need to drink thickened water. You might get some water into your lungs and you may be able to cough it up or you might not and you might develop pneumonia. All for a drink of water, you might die.

I share this story with you in the hopes that you will gain a better understanding of the disease and know it is much more than just memory loss. I hope you realize that each person who lives with Alzheimer's and each person who loves and/or cares for a person with Alzheimer's has a unique story to tell ... yet there is a universality in experiencing the disease. I can sum it up in one word: LOVE. That is what it takes to live with and love or care for someone with Alzheimer’s Disease.

While sometimes I am devastated by Gregory and my loss, most of the time I can re-live the beautiful past I have spent with him, I can tell my stories and tell his stories as well. I know that the disease has made our love stronger and that it has enabled me to be a better partner, a better caregiver, a better person.

It has enabled me to become a more compassionate person. I know that while Gregory cannot change his condition or what it brings, I can change and accommodate his needs and make his journey just a little bit easier. I can see and love Gregory as the person he was and is and not just see him as the disease he has.

Gregory is at times aware of his losses and was at times more and at times less aware of them through the various stages of his disease, but for the most part the disease itself creates a buffer for the person affected, protecting them from the reality of their losses. 

For some people, the losses are often frightening, frustrating, and confusing causing the person to strike out, argue, become resistive and/or violent. Using those words however is unkind as they imply intent and we must remember it is not a choice by the person with Alzheimer’s, it is the result of the disease and its effect on the brain. In addition to sensitive care and understanding, if necessary medicine and drugs can help make the journey a little easier but medications often cause more difficulties then they solve.

As Gregory continues to slowly disappear, I can make sure his life is happy, safe, and that he is well taken care of. That is what love is all about. I have learned how not to be selfish by seeing the world through my own eyes but rather through his eyes and basing all my decisions on what will be good for Gregory and on my love for him without thought of my comfort or distress.

One side note: We are a same sex couple, having been in a committed relationship for over 40 years. Although the tide is turning, many people still do not want to acknowledge our relationship, many states do not want to protect our rights, and few churches would choose to bless our relationship.

We have been able to take additional legal steps to make sure that our rights are not violated and that I can continue to take care of Gregory and make decisions on his behalf.

However, Alzheimer’s disease does not discriminate and does not take its direction from the law or from people’s sense of morality. Alzheimer’s accepts everyone no matter the circumstances. That said, in this story, the fact that we are a same sex couple should disappear when you realize that our story is simply about two people who love each other,  trying to deal with this insidious disease as best as they can.

While Gregory and my journey with Alzheimer's for the last eleven plus years might be moving, might bring on a few tears, might cause you to think differently about Alzheimer's Disease, or any dementia for that matter, remember that our journey is just one of many.

Do what you can to help: whether helping someone you know who has the disease, or being there for someone you know who is caring for the person with the disease. Be careful not to make others feel bad by careless remarks about forgetting, aging, memory, dementia, or Alzheimer’s. 

You can help by volunteering. You can help through your generous financial contributions to the Alzheimer's Association or your local Alzheimer's organizations and facilities.

Thank you. May the universe be with you and yours. May the cure for and prevention of Alzheimer’s and all dementias be discovered. May your journey through this life be one filled with joy and love.