Good morning. 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. Together, we were on the Dementia Journey for 12 years.
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 hold a Bachelor’s Degree in Liberal Arts, an Master’s Degree in Education, and an Advanced Certificate in Education Administration and Supervision.
I am an educator, have worked with children in regular education as well as children with special needs.
I was an administrator for a Talented and Gifted Education Program, taught Junior High Spanish.
I have 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 Bachelor’s Degree from Wesleyan University in Connecticut & received his Master’s Degree from Harvard University in Architecture, with Phi Beta Kappa recognition.
He ran his own high end architecture and interior design firm and served as 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 was NOT a VICTIM of Alzheimer’s ... but rather a HERO.
Gregory did not SUFFER with DEMENTIA/ ALZHEIMER’S, but rather LIVED as WELL as possible, refusing to accept the diagnosis as a “DEATH SENTENCE.”
I NEVER referred to the diagnosis as HIS but always OUR diagnosis.
Actually, we were relieved on receiving the diagnosis because now we had an idea of what we had been experiencing & and we 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.
The DOCTORS were able to RULE OUT what was NOT going on for example Vitamin B deficiency, small strokes, Parkinson’s, etc.
But being a PROGRESSIVE, INCURABLE disease, what were they REALLY able to do during those EARLY and MIDDLE stages except confirm my existing observations?
They prescribed 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 MEDICALIZING our experience, I worked very hard creating a NEW SENSE OF FAMILY, HOME, and RELATIONSHIP to fit Gregory’s changing needs.
For the most part he dealt with the disease in his usual CALM manner. At a certain point later, the Alzheimer’s created a BUFFER which kept him from being fully aware of the changes through which he was going.
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 NORMALCY continued …sometimes on a daily basis…sometimes hourly.
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.
My ROLE in providing for our life experiences continued to INCREASE over time.
My MAIN JOB became making sure Gregory knew WHO he was and WHERE he was. That he was in the RIGHT PLACE doing the RIGHT THING at the RIGHT TIME.
And if LOST; physically or emotionally, that I / we would ALWAYS FIND each other.
He always KNEW who I was, his LOVE for me and my PLACE in his life. He knew he could TRUST me, that he was SAFE, LOVED, VALUED, and RESPECTED.
NOT A DEATH SENTENCE
The times were not easy, but we persevered and did a good job! I was able to support him by helping him to be free of daily worries, responsibilities, and fears.
I was able to help him COMPENSATE for his changing abilities while always trying to make sure that the RESPECT & COMMUNICATION which defined our relationship never faltered.
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 YANG was true for me!
Gratefully, I was retired and had all the time in the world for him … and for us.
We had all of our LEGAL ARRANGEMENTS and END of LIFE WISHES in order. 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. We were fortunate that our financial situation was good.
Each day our love continued to grow and our tag line became, “I love you more than ever!”
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. We enjoyed our condo and living in a very active Downtown Evanston, Illinois.
We entertained, enjoyed family and friends in our home, 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.
We continued to be COMPASSIONATE with each-other, ourselves, and those around us. 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.
As the Dementia progressed and we were no longer able to discuss TOGETHER 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 I created.
Essays and poetry just seemed to leap forward onto the page. Over five years I posted 1,500 entries with over 150,000 people tuning into the BLOG .
Gregory was at home for 10+ of his years living with dementia.
His 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 and I could easily visit every day and sometimes twice.
I felt some GUILT at having to move Gregory to a memory care facility.
However, 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 played an active role in determining Gregory’s health care, the care facility always respected my wishes as well as helping me to understand best practices.
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 ME to 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 times 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 LOVE means GREAT GRIEF. I will always grieve at some level the loss of the love of my life, but that LOVE carries me forward as I continue to live a meaningful, useful life, and as I support others facing similar experiences.
Towards the end of Gregory’s life, he and I were the subjects of a documentary, ALZHEIMER’S: A Love Story, which has been accepted to over 90 film festivals worldwide.
It has won over 35 awards, the most prestigious of which were two from the American Pavilion at the Cannes Film Festival.
There is a link to the documentary on my Keynote handout, on my web site, and also you can see the documentary later this morning at my 11:45 break-out session,
“Exploring the Dimensions Love, Grief, and Alzheimer’s.”
Today I talked about MY REALITY … which like DEMENTIA … expresses itself DIFFERENTLY for each person.
I talked about LOSS and LOVE. I talked about SORROW and JOY.
I talked about being HUMAN … with HEAVY dashes of optimism, fortitude, faith, strength, creativity, sense of journey, humility, inspiration, leadership, advocacy, and courage … among others; as well as confusion, frustration, fear, and anger … among others.
When we share our STORIES, especially the tough ones, it opens up our hearts … and makes it easier for other people to share THEIR stories.
And it gives us the feeling that we are not alone, because … IN THIS … WE … ARE … NOT …ALONE.