The photo of Gregory and me was on the screen to my stage right as I made the 13-minute presentation. You may have read a similar version previously but this is the first time I have been able to get "the story" down to 13 minutes.
My notes on the presentation were printed on card stock in 24 point font to prompt me as I delivered it. I knew most of it by heart so was able to be face to face engaged with the audience. The BOLDFACE was to help make sure my emphasis was clear.
I prepared a bibliography hand out as well.
My fellow presenters. We each had 12 minutes.
In the printed conference program book
Photo of Gregory and me was on screen during my presentation
AN ALZHEIMER’S LOVE STORY
By Michael Horvich
Telling our stories is important. Whether the story is told by a person diagnosed with dementia or by a person who loves the person with the diagnosis, our stories will change the world.
My name is Michael and the story I am about to share with you is a very personal one. I’m comfortable with crying in front of you, however it is very difficult to cry … and talk at the same time.
So, if I get choked up, I will pause, take a few deep breaths, and be right back, probably before you even notice I have gone.
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.
NOT AN EXPERT
Let me say that I am NOT here today as an EXPERT in the field of Dementia and Alzheimer’s …but rather as someone who has EXPERIENCED it … DIRECTLY, INTENSELY.
Let me tell you a little about me …I am an educator, have worked with children in regular education as well as children with special needs, was an administrator for a Talented and Gifted Education Program, taught Junior High Spanish, and taught a number of university-level education courses and seminars.
I have been retired for 20+ years but have been more than active as an educator, speaker, writer, poet, blogger, actor, opera supernumerary, children’s museum curator, flea circus ringmaster, and dementia /Alzheimer’s caregiver partner.
Gregory earned a BA at Wesleyan University in Connecticut and received his Master’s Degree from Harvard University where he studied Architecture, with Phi Beta Kappa recognition.
He ran his own high-end architecture and interior design firm and served as the architect of record for renovations at the Baha’i National Shrine in a suburb of Chicago, Wilmette, Il.
Gregory was a writer, an artist, was well versed in music and art history, was a concert level pianist, spoke French, and won many awards for his architecture and interior design skills.
Gregory and I walked the Dementia / Alzheimer’spath together for 12 years.
He was NOTa VICTIMof 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.”
I never referred to the diagnosis as HISbut always OURdiagnosis.
We were relieved on receiving the diagnosis because now we had an idea of what we had been experiencing & and could prepare for the future
... although at the time we did not really understand the nature of the roller coaster ride we would be on until his death.
As you know, Dementia /Alzheimer’s is not just a memory problem! It includes cognitive issues as well as physical, mental, physiological, psychological, social, emotional, medical, etc ... and is complicated by the many ways in which it expresses itself, usually different for each person affected!
NOT A DEATH SENTENCE
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 to be free of daily worries, responsibilities, and fears.
I was able to help him compensate for his disappearing abilities while always trying to make sure that the respect and communication which had defined our relationship never faltered.
The DOCTORS were able to RULE OUTwhat was NOTgoing on, but being a PROGRESSIVE, INCURABLEdisease, what were they REALLY able to do during those EARLYstages except confirm my existing observations?
They WERE able to prescribe drugs like ARICEPT and NAMENDA, which are purported to slow down the disease, but how does one measure … “SLOW DOWN” and against what baseline?
NEW SENSE: FAMILY & HOME
Instead of spending time MEDICALIZINGour experience, I worked very hard at CREATING A NEW SENSE OF FAMILYandHOMEand RELATIONSHIPto fit Gregory’s changing needs.
For the most part he dealt with the disease in his usual CALM manner and at a certain point, the Alzheimer’s created a BUFFERwhich kept him from being fully aware of the changes through which he was going.
YES, there were times when he became depressed, sad, frustrated, and fearful but most of the time he was content and happy. The same YING AND YANGwas true for me!
Fortunately, I was retired and had all the time in the world for him … and for us.
In the beginning, I REFUSED to refer to myself as Gregory’s CAREGIVER… out of RESPECT for not wanting to diminish him to the role of being my “PATIENT.”
I remember thinking “If the disease would only stop progressing at this point I would be content.”
But PROGRESS it did … and the RESTING, level periods were shorter and the need to re-think and re-establish NORMALCYcontinued … sometimes on a daily basis … sometimes hourly.
Sometimes Gregory’s PERCEPTIONof … and INTERACTION with the world … was so confused and disoriented that I not only didn’t know how to SUPPORT him … but I didn’t know how to INTERPRET what he and/or I were experiencing.
Being able to monitor and provide for Gregory’s increasing needs, in a RESPECTFUL understanding way, yet not letting him become overly frustrated was more and more difficult.
But we did not give up!
Family and friends were available but they had lives of their own and even though they tried, they couldn’t REALLY understand what I was going through.
I made sure that our daily life was full and rich and meaningful. Our life was filled with much laughter as well as many tears; joy, as well as sorrow. Above all, it was filled with LOVE& TRUST.
I had all of our legal arrangements in order, and being a same-sex-couple, before marriage was legal in the United States, we also had to have all types of special “permissions” and “protections” in place.
We closed Gregory’s business and our time was now our own. Our love continued to grow.
We enjoyed our condo and living in a very active Downtown Evanston, Illinois.
We entertained, enjoyed family and friends, ate out, cooked at home, went to the opera and theater events, and we were buoyed up by our pets with their unconditional love.
We traveled in the U.S., Europe, and Mexico.
We were able to simplify our life, only keeping the most meaningful parts.
My ROLE in providing our life experiences INCREASEDmore and more over time.
We continued to be compassionate with each other, ourselves, and those around us.
As the Dementia progressed and we were no longer able to discuss our experiences or difficult exchanges, I turned to my computer to write.
This helped me process my understandings, and emotions, keep family and friends up to date on our journey and share with others who might tune into the blog.
Check out my website, HORVICH.COM, for links to my Alzheimer’s BLOG, my writer’s BLOG, as well as my other projects.
You will also find a link to a 15-minute documentary, ALZHEIMER’S: A Love Story, about Gregory and me which was made towards the end of his life.
It has been accepted to over 90film festivals worldwide and won over 35awards including two from the American Pavilion at the Cannes Film Festival. That’sHORVICH.COM.
Gregory was at home for 10+ of his years living with dementia. Then 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 his needs.
I found an excellent memory care facility 10 minutes from home. I could easily visit every day.
I felt some GUILT at having to move Gregory to a memory care facility … but his new sense of community and belonging, the safe clean environment, the delicious meals, the medical support, and the presence of many people around him were all positive attributes of my decision and contributed to his well-being.
I hired a daycare worker to support Gregory’s physical, as well as social/emotional needs since nurse assistants in most care facilities do not have enough time to meet all the needs of all the residents.
We were very fortunate to be able to afford the extra care for Gregory.
I played an active role in determining Gregory’s health care, the facility always respected my wishes as well as helping me to understand best practices.
Admittedly, it is easier to talk about our journey IN LOOKING BACK… when compared to the overwhelming, seemingly impossible ordeal, and sometimes HELLit was to be living with and supporting Gregory through the Dementia /Alzheimer’s while MAINTAINING MY OWN SANITY. Keeping a positive outlook was not easy but always helpful!
Hospice joined our team and worked hand in hand with the memory center for the last 9 months of Gregory’s life.
I am GRATEFUL to this day for the medical help Hospice provided for Gregory but also for helping MEto understand the nature of Dementia’s trajectory and in the end, the process of dying.
PREPARING TO DIE
One day in early October 2015, I received a call from Hospice informing me that it looked like Gregory was preparing himself to die.
He was non-responsive for three days.
The night before he died, I crawled onto the narrow bed next to him. I hugged him and whispered, “Leave when you are ready. Don’t worry about me. I will miss you, but I will be OK.”
If he needed it … I gave him PERMISSION to die. I had done this several before.
Now here is what I call the MIRACLE, and Gregory’s FINAL GIFT to me. I kissed him goodbye on his open mouth three times, on the third kiss, having been non-responsive for three days, in a COMA, Gregory opened his eyes briefly and kissed me back.
On the next day, October 4, 2015, Gregory died.
GREAT LOVEmeans GREAT GRIEF. I will always grieve at some level the loss of the love of my life, but that love also carries me forward
as I continue to live a meaningful, useful life, and as I support others facing similar experiences.
Gregory and my journey with Dementia was the most challenging, painful, frightening, confusing, and frustrating YETloving and liberating experience we have ever encountered.
We SUCCEDED in getting through it with DIGNITY. We were not always at our best ... but done with LOVE, KINDNESS, UNDERSTANDING, RESPECT and FORGIVENESS was a time of RENEWED LOVE, CREATIVITY, & many UNEXPECTED GIFTS.
My goal in sharing Gregory’s and my story with you is to let you know, “You are not alone. It will be difficult but you can do this!”
34thAlzheimer’s Disease International Conference – Chicago – July 2018
Session: “Engaging people living with dementia and care partners”
July 28, 2018 – 4:00-5:30 pm – Room 196b
ALZHEIMER’S: A Love Story References/Resources
ADVANCED LIFE PLANNING AND DIRECTIVES
A “Peace of Mind Life” begins with planning ahead.
The Five Wishes
Worksheets including advance directives and planning
Created by “Aging with Dignity.”
Good End of Life
Worksheets including 1) The Plan, 2) Advocates, 3) Hospital Readiness, 4) Caregiving guidelines, and 5) Last Words.
Advance Life Directives and Planning
Legal Guide for Lesbian and Gay Couples 2016(Updated often)
Excellent guidelines for Gay Couples and what needs to be in place at end of life.
Living a loving, centered life helps prepare for anything which may occur.
How to Love. Thich Nhat Hanh. 2014.
The Four Agreements. Don Miguel Ruiz. 1997.
Attitudes of Gratitude. M.J. Ryan. 1999.
There’s A Spiritual Solution to Every Problem. Wayne W. Dyer. 2003.
Living Beautifully: With Uncertainty and Change. Pema Chodron. 2013.
DEMENTIA / ALZHEIMER’S
Each person experiences Dementia/Alzheimer’s in their own way but none-the-less a universality of experience exists.
What the Hell Happened to My Brain? Living Beyond Dementia. Kate Swaffer. 2016.
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. Nancy L. Mace & Peter V. Rabins. 2012.
Living Your Best with Early-Stage Alzheimer’s. Lisa Snyder, MSW, LCSW. 2010
Please Take Me Home Before Dark: One Family’s Journey With Alzheimer’s Disease. Billie J. Pate & Mary Pate Yarnell. 2006.
Into the Mist. Deborah Uetz with Dr. Anne Lindsay. 2005.
Alzheimer’s Early Stage. Daniel Kuhn, MSW. 2003
Learning to Speak Alzheimer’s. Robert N. Butler MD. 2003.
What If It’s Not Alzheimer’s? Lisa and Gary Radin. 2003.
While living with Dementia/Alzheimer’s there is a day to day loss grief, anticipatory grief, and end of life grief.
It’s OK that you’re NOT OK. Megan Devine. 2017.
Yoga for Grief and Loss: Poses, Meditation, Devotion, Self-Reflection, Selfless Acts, Ritual. Karla Helbert. 2015
Healing After Loss: Daily Meditations for Working Through Grief. Martha W. Hickman.1994.
Two pamphlets: Navigating GRIEF: A Beginners Guide. ANDAnticipatory Grief: A Guide to Dealing with Impending Loss. Other information also available at: www.whatsyourgrief.com.
MORE ABOUT MICHAEL – CHECK OUT HIS WEBSITE
Michael has been called a “Renaissance Man.” He shares many of his interests with links at his online site.
BLOG: michael a. horvich cares about alzheimer’s
Informed by Michael and his life partner Gregory’s journey with Dementia/Alzheimer’s including anecdotes, observations, practical how to, life lessons, poetry, and more. Now inactive but archives over 1,250 posts which received 110,000+ hits from 2010 to 2015.
BLOG: michael a. horvich writes
Memoirs with observations, life lessons, anecdotes, fiction, creative non-fiction, at times fiction, poetry, dealing with grief, & more.
Many of Michael’s poems have been informed by his and Gregory’s journey with Alzheimer’s but they also include much more including humor, insights, life observations, dreams, stories, etc!
Sit with Me a While: The Collected Poetry 2000-2010
Sit with Me A While Longer: The Collected Poetry 2011-2013
MICHAEL’S DOCUMENTARY — ALZHEIMER’S: A Love Story
This 35+ award-winning documentary has played to over 90 film festivals worldwide including the Cannes Film Festival.