FOR GREGORY

Periodically I will add posts here if the sources provide additioanl informaiton on how to think about and deal with Dementia/ Alzheimer's Disease.

PLEASE NOTE:


SCROLL DOWN FOR TEXT and BIBLIOGRAPHY from DAI WEBINAR 2/22-23/2017. You can also find this information on my website: www.horvich.com


Even though this blog is now dormant (see info below) there are many useful, insightful posts. Scroll back from the end or forward from the beginning. My guess is that you could spend a lot of time here and maybe learn or experience a thing or two about living with and loving someone with Dementia/Alzheimer's or maybe come away with the feeling that "you are not alone" in YOUR work with the same!


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THIS WAS THE FINAL POST TO THIS SITE BEFORE IT WENT DORMANT.


Happy New Year 2016. With a new year comes new beginnings and sometimes endings. If I am personally progressing and if I am doing a good job in my grieving Gregory's death; if I have been able to learn my lessons in living and loving someone diagnosed with Dementia/ Alzheimer's; if I am to get on with my life ... I need to bring this Alzheimer's blog to an end since my writing has been dealing less with Dementia/ Alzheimer's and more with life after Dementia/ Alzheimer's.


Of course, I will always continue to work for and support fair treatment on behalf of people with Dementia/ Alzheimer's and may post here from time to time. Also, there are many wonderful posts here through which you may browse.


With this change, I will continue and reinvigorate my "michael a. horvich writes" blog which deals with grieving Gregory's death, life lessons, personal experiences, observations, memoirs, dreams, and humor in essay and poetry, as well as an attempt now and then at sharing a piece of fiction.


Please follow me there by clicking http://mhorvich.blogspot.com or click the link located on the right side of this page.


Finally, COMMENTS are always important to me and you can still comment on the posts on this blog! CLICK "Comments" and sign in or use "Anonymous." Leave your name or initials if you wish so I'll know it's you? Check the "Notify Me" box to see my reply to you.



Sunday, March 1, 2015

Our Story

In anticipation of the upcoming documentary film being made about Gregory and me and our Journey with Alzheimer's, I decided to try to capture the salient features of our past 40 years together. No easy task but I think it turned out OK. I like to say that if you would like to know what our love of 40 years has been like, it would take me 40 years to tell you our story. This is somewhat briefer!


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FLASH BACK TO BEGINNING: Gregory and I met some 40 years ago when I was 30 and he was 26. It was during the 70’s. The time of  President Nixon, the Vietnam War,  a decade of pivotal change in world history focusing especially on economic upheavals. In the United States, social progressive values took front stage with increasing political awareness in general and political and economic liberty of women in particular. 

It was the time of the ERA, Equal Rights Amendment which was first introduced in 1923. It passed both houses in 1972, but never succeeded in passing enough state legislatures to become an amendment. Although there has been some progress, we are dealing with equal rights for women issues to this day.

In Chicago there a number of groups of men under the umbrella name of “The Men’s Gathering,” whose purpose was to support and facilitate awareness for its members we were seeking to be better people especially in relation to women and their fight for equal rights. The group of 20 or so men to which Gregory and I belonged included young, old, gay, straight, multi-racial men and met on Monday’s.

Gregory was a bi-sexual man, recently moved to Chicago with his wife of seven years, he had a lover in Boston, he was a stay at home husband trying to become a writer, and he was thirsting for contact with other people, men, who had similar interests.

I was s homosexual man, life long resident of Chicago, living with my same-sex partner, having the 13 year relationship break up as we grew apart, and teaching elementary school in a Chicago suburb.

Gregory had attended several Gathering meetings before the first one I attended. I was there a little before the meeting and I can close my eyes and picture exactly what Gregory looked like when he walked into the room. Kaki slacks, a navy blue Lacoste shirt, a wide brown leather belt, Docksiders without sox. It was “lust at first sight.”

Gregory reports that he experienced the same lust at first sight when he saw me across the room in my tight blue jeans, flannel shirt, tennis shoes.

FLASH FORWARD FOR A MOMENT: As I am telling you this story I reflect on my being a story teller and being told I am pretty good at it. I tell not only my stories but now I also tell Gregory’s stories as well. After 40 years of being together I know his stories as well as I know my own. 

I have always loved writing but I began being able to call myself a writer with Gregory’s Alzheimer’s diagnosis which we received in 2004. Gregory and I built our love, our relationship, on communication, trust, respect, and negotiation. When I could no longer discuss things with Gregory because he didn’t understand, I turned to my computer. Writing helped me process our life and come to some kind of closure when we ran into a bump, to help me deal with my frustration, confusion, anger. My perceptions of what was happening to us were not the same  as his perceptions and it served no purpose in trying to convince him so I turned to writing. I have self-published several books of poetry, maintain three blogs (one of which is about Alzheimer’s Disease,) am trying to get a manuscript published with the working title: GYROSCOPE: An Alzheimer’s Love Story. 

FLASH BACK TO OUR FIRST meeting at The Men’s Gathering. During the 70’s, besides woman’s rights, we were also witnessing Gay rights. The Stonewall Riots took place in 1969, Gays chanted we will never go back into the closet, and the rainbow flag ikon was adopted by the gay and lesbian community.

It was a time of sexual freedom, not only for gay men and woman but for everyone who was at all sexual. People would go to the bars for the main purpose of hooking up for a one night stand. It was pre-AIDS and a lot of younger people were pretty promiscuous. I am not using that term in a derogatory way but rather descriptive. Also, monogamy was not important to many of us.

Over a year of attending The Men’s Gathering, Gregory and I were already in other relationships, but we were getting to know each other. While everyone seemed to be hopping in and out of bed, and even though our first sighting of each other was one of lust, we courted for a year before consummating our relationship. Over time, Gregory and his wife parted, my lover and I parted, and Gregory and I dated for another year before moving in with each other and making a commitment of our love. 

For 30 years our life and our love continued to develop and grow. We both continued to grow on our individual paths as well as on parallel paths. We had our own interests and joint interests. We had our own friends and joint friends. We got to know and love each other’s families.

Our relationship had roles but not based on “who was the wife and who was the husband” In those days the male/female, husband/wife roles were very clearly defined and followed. Same sex couples tried to fit those roles. Gregory and I did not define the roles but rather the tasks. He liked to cook I didn’t mind doing the shopping. I liked to clean he liked to rearrange the furniture. He did the bills I did the taxes.

During the thirty years we often re-negotiated and changed roles. At one point as Gregory was changing jobs and trying to find a career I supported us. At another point when I was “trying to find myself” I explored Mexico for two months while he supported me. At one point Gregory decided to finish his internship and license tests to become an architect and at another I left teaching to work on my doctorate. 

Our love continued to grow, we were each others best friends, and at times worst critics. We always supported each other with love, respect, and emotional understanding.

We traveled, loved each other, loved our families and friends, lived our lives to the fullest.

FLASH AHEAD 30 YEARS: Slowly I noticed that things were not quite right. Gregory started making poor decisions which was not at all like him. His moods became different. While driving, he would stop at a stop light and treat it like a stop sign, moving again while the light was still red but after checking for no traffic. 

He made excuses, was forgetful in ways that he never had been. At the architecture firm he was not on top of his game, was not handling the clients as well as he always had easily done, missed meetings, got  confused with details. Little things at first but adding up to alert me that something was not right. Gregory also began to notice his inabilities but didn’t understand what was happening.

One day, I arrived home at 8pm from rehearsal for an opera that I was in as an extra and he was sleeping. Just a nap but when I woke him up he didn’t remember where he was, how long he had been down, if he had eaten or not. He was acting so strangely that I went into my previous training as a hospital orderly: “What day is today? Who is the president? What is your name?” He didn’t remember that his parents were dead. He struggled.

After talking with our doctor, I took him to the emergency room with a suspected stroke. Turns out it was not a stroke but “Global Amnesia.” A stroke is an absence of oxygen to the brain, Global Amnesia is an extra pulse or two of  blood and oxygen to the brain which scrambles its functioning for 24 hours. Usually the person returns to normal within a day. Gregory’s got better but never returned to normal. 

That experience with the other changes I had been seeing, prompted me to seek medical advice. We were given the diagnosis of some kind of dementia, of which there are many, most likely Alzheimer’s.

In some ways we were both relieved at the diagnosis if only because it confirmed what we had been seeing and at least we knew what we were dealing with and how to proceed. What we didn’t know was what a bumpy ride we were about to take for the next ten years.

During the beginning years I slowly became responsible for the maintenance of most of our life. I set up  a living trust to insure that in the event of my death, Gregory would be taken care of for the rest of his life. We updated wills, Power of Attorney for Health and Finances, applied for Social Security Disability Insurance for Gregory. Neither of these were easy tasks because of our being same sex partners with no legal rights or guarantees.

We finished up the open jobs with the Gregory’s  architecture firm, helped our employees land on their feet in new employment, sold our property which included rental units, the firm’s studio, and our loft apartment. We purchased a condo in the heart of downtown Evanston, moved, furnished, and began a new life living with Alzheimer’s … NOT dying with Alzheimer’s. We would say, “We had a choice lie down and die or hunker down and keep going! We chose to hunker down.”


Alzheimer’s is a disease that does not hold up to definition or description. Suffice it to say that this insidious disease slowly disappears the person affected including their ability to relate, think, act, live in any way that reflects the normalcy that we all try to establish for ourselves. I had to live in Gregory’s rapidly changing world which was anything other than normal and in mine as well.

Not meaning to be pejorative but many of Gregory’s behaviors and our interactions came to look more like CRAZY than within any range of normal.

For my part, I used to say that on a “Saint Scale,” in caring for Gregory, I never fell below an 8 but that wasn’t good enough for me. When I became frustrated or angry or lost my temper I was quick to apologize. Often I cried at my own lack and Gregory comforted me, saying, “Michael I don’t expect you to change or to be perfect, I just want you to be here with me.” Sometimes our life was spinning so out of control that I didn’t even know how to behave or react to Gregory’s needs.

Gregory became more and more dependent on me, we spent more and more time together, I had to monitor his behavior 24/7, eventually he began to get lost when on his own, and couldn’t be by himself in the condo. At that point I began having Northwestern Students come in twice a week as a companion to Gregory and to allow me to get out to run errands or just have some time to myself.

Ten years living with Alzheimer’s was difficult for both of us but our love and commitment and trust in each other helped get us through. As Gregory’s abilities continued to diminish, he differed to me. For example, in the beginning he ordered his own meals when we went out to dinner, then I told him what was on the menu, then I offered him a few suggestions, “meat or chicken?” and finally I just ordered for him. He would smile and comment, “You always know what I like to eat, this is delicious!”

Gregory was always the chef and I was the sous chef. I did the grocery shopping and he was creative with what I bought. Slowly I cooked more and he became the sous chef. Slowly he wasn’t able to help at all so he set the table. Next, the table setting became confusing so I did that also and he cleaned up after dinner. Slowly he forgot how to wash dishes, use the dishwasher, put dishes back in the cabinet. So he would keep me company at the island counter while I did it all. I didn’t mind. I only loved him and still do.

Keeping expectations for Gregory was difficult. His abilities would slowly disappear, return, disappear again, return but not fully, disappear yet again eventually never to return expect once in a great while. I always held high expectations as the risk of insulting or diminishing him but I also keep a pulse on the slowly disappearing abilities and altered my expectations accordingly.

I kept a busy social life for us even though it was becoming more and more difficult for me to do. We subscribed to the opera, several theater companies, went to concerts. We entertained, had 40 people in for his Fourth of July Birthday, had weekend sleepover guests, went to parties.

In some ways Gregory’s Alzheimer’s was all about me. It was me that could still change and accommodate, Gregory could no longer do that. Sometimes he would become frustrated at not being able to formulate a sentence, remember a word, or communicate an idea. I would know what he wanted to say based on our time together and could finish his thoughts for him. For the most past he was content, calm, and accepting of his situation.

Over time, I was able to provide an environment for him in which he had no worries, no responsibilities, no expectations, only a narrow enjoyable routine that I helped him follow each day. He was happy and enjoyed life. We would “butt heads” now and then as the Alzheimer’s got in the way but we were both quick to apologize, to laugh at the absurdity of things, to cry together.

Although I usually kept things in perspective and was together emotionally, for me the biggest difficulty was the 24 hour monitoring, the loneliness of being in charge of every thing, and at times the fear of the unknown and dread of the future.

FLASH FORWARD TEN YEARS TO 2014: Towards Christmas of the tenth year he became less trusting and differed less to my suggestions and actions. He would become angry with me and resist my help. He would strike out but never hurt me. He forgot how to go to the bathroom but did not become incontinent because I sent him to “try” every two hours or so. Slowly he forgot how to clean his butt or whether he had already cleaned himself. Slowly he forgot how to bend his body to sit down on the toilet. He was more often angry and frustrated. 

I became more and more of a nurse maid. I did it with love. He needed my help which I gave freely. When you love someone, it is amazing what you will do and how you will change and accommodate your partner.  I became less frustrated and less often angry as he got worse and worse because it was obvious that he could no longer function and I was able to reduce my expectations more quickly. I always tried to treat him with respect, understanding, and compassion and usually was successful.

Finally, one day in the beginning of January 2014, he became very angry with me and pushed me. I tried to calm him down but to no avail. He seemed terribly frightened of me and untrusting. He had me by both wrists and was hurting me and shouting at me. I pried myself loose of his grip, forced him down onto the sofa, and called 911 for help.

911, hearings shouting in the background as I explained the situation sent two police, an ambulance, and paramedics. They were at the condo within 5-10 minutes and when I opened the door there were 7 men in blue waiting. I was afraid that Gregory would get more upset but he calmed at their sight, realizing I guess, that they were there to help him and save him from the evil me.

I did not take it personally, acted rationally and decisively and followed him to the nearby hospital. They sedated him, kept him in a room with an observer (because of the violence threat,) and by the next day he was calm, happy to see me, acting as if the psychotic episode had never happened.

But I knew that he had given me a sign that after ten years of living with Alzheimer’s Disease, he needed more help than I could provide at home. Within his three day stay at the hospital I had found a bed for him, in a private room, at the Lieberman Center Memory Care Facility. It is one of the best facilities in Chicago and while it was a difficult decision, it was right one. It is 3 miles or ten minutes drive away from the condo which makes it convenient to visit him every day.

During his first month at Lieberman he fell, cracked open his head, bruised his forehead, and was rushed to the hospital. Two weeks later he had a major Grand Mal Epileptic seizure, rushed to the hospital again, was put on dilantin, and caught the flu. After another week of disorientation in the hospital he lost more of his abilities. When he returned to Lieberman he could no longer walk, toilet himself, feed himself, and much more. 

All this happen so rapidly that I felt like I was spinning, like a top. This was the new Gregory who had settled into his new, much narrower but more comfortable and tolerable for him life. He was alert, aware, and engaged with me when I visited and never once asked, “What am I doing here?” or said, “I want to go home.”

FLAST FORWARD TO TODAY: That was year ago. We are blessed by The Lieberman Center and the wonderful care they give Gregory. He is happy and calm in his new “home” with his new “family,” and enjoyes the daily activities of his greatly reduced life. I visit every day and he is always happy to see me. 

The lieberman staff provides great nursing care but the ratio of staff to resident  (best in Chicago) is still only enough to provide basic nursing care.  I hired a day man to provide social experiences for Gregory from 11:30-6:00 seven days a week. Manny keeps Gregory company, shaves him, washes his face, combs his hair, looks through picture books with him, chats with him, sets up and plays the TV, offers drinks and snacks, runs music on the headphones and iPad, takes Gregory outside, down to building events, they go “out for a walk” in the wheel chair.

I wouldn’t have ordered it this way, but I am so grateful and consider Gregory and myself so fortunate for what we have and for the care Gregory receives. I have piece of mind knowing that Gregory is well taken care of by the staff of Lieberman and Manny.

And now, I have been able to begin redefining my life, my activities, and my new home without Gregory’s being here with me. My current life sound-bite is, “I have great JOY even though it travels on the shoulders of great GRIEF and SORROW.


4 comments:

  1. wow just wow! what a beautiful loving real life story full of compassion and care. both of you are so brave and you michael in particular have shown and continue to demonstrate what it really means to love someone. my heart joins yours in your journey. you will be blessed and have good karma for many lifetimes to come <3

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    1. Thanks Amazingsusan! I could say the same to you.

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    2. Michael......I am so excited to hear about this documentary. I think the story of you and Gregory is a story that should be told and will be wonderful to hear and from which many people can learn. I have learned so much from your blog. My thoughts and prayers are always with the two of you. Much love to you. Cousin Linda

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    3. Linda, You have been and continue to be so supportive of Gregory and my "adventures" and it is much appreciated. I am looking forward to a spring get together and will be in touch beginning of April! Love you and yours.

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