GYROSCOPE

On The Dementia/Alzheimer's Path, A Life Documented, and A Love Story, I think, will be the title of the book I am working on. It used to be called GYROSCOPE: An Alzheimer's Love Story. The title came from the ability of a gyroscope's ability to email standing while wildly spinning.  Do you want to vote for your favorite title? Use the "Comments."

I wrote a memoire about the first seven or so years of Gregory's and my life with Dementia, had an editor fine tune it, and began trying to get it published. At that point I began my BLOG, which I thought could be "Volume 2" of the book. When Gregory moved into the Lieberman Center Special Memory Care Unit, I thought "Volume 3" could over that period of our life (notice I use LIFE singular not our LIVES!) through to his death.

Well Gregory surprised me, as he usually likes to do (liked) to do. So I am in the process, in fact have decided to devote the winter to writing it, of pulling together the memoire, the BLOG, and Lieberman, and Gregory's death into one terribly (wonderfully) large volume of memoirs.

Writing

Writing Your Story

This DailyOM post shares so much of my experience with writing this blog.

October 2, 2015 Writing Your Story Personal Talesby Madisyn Taylor We all have a story to tell whether we publish it or keep it for just ourselves or family; allow yourself to be heard. Everyone, at one time or another, has wanted to express his or her story. Writing a memoir to read privately, share with family or friends, or publish is an emotionally satisfying way to gain perspective on your experiences while sharing your unique voice. We’ve all experienced feelings and events in our lives that we are longing to write down. Giving in to that urge can give you an outlet for purging any frustration, anxiety, or long-dormant feelings. No one else has to read it. You may even want to write your story without reading it right away. Satisfying the need to tell your story is not predicated upon your writing ability. It does, however take effort to write down the truth in detail. Your memories, captured on paper as descriptive scenes, sights, sounds, and scents, may at first seem disconnected or incomplete. But rest assured that you possess the ability to shape your recollections into stories. Everyone wants to be heard. Reading your story to others can meet that need. Writing your story can also help you understand your life experiences. And when you finish writing, you may be surprised at what you have accomplished. Your story can encompass as much or as little of your life as you prefer. You may surprise yourself with new insights, or you may find yourself exploring your roots, your identity, and your future through your words. Allow your writing to guide you and write as truthfully as possible. Don’t worry about what others will think of your personal journey, your style of writing, or your words. Research has shown that writing a personal narrative filled with feelings and perceptions can create long-term health benefits. As you write, remember to have compassion for yourself, particularly when writing about traumatic events. If you are a young person, you can add to your life story as you grow older. Your writing may help family members know you better, or they may understand themselves more through reading about your experiences. More importantly, you are expressing yourself in a permanent way, giving a gift to yourself, and letting your voice be heard.

On Writing, On Life

Interesting that it more difficult to write about interesting, fun, timely things here than it is to write about emotional, difficult, worrisome things on my Alzheimer's BLOG. Guilt plays a role in making me come here when the last post date gets too far for comfort.

"Write everyday if you want to consider yourself a writer." Sit down and write about whatever comes into your head. Use writing motivations to help you get started. Write non-stop for ten minutes about whatever you are thinking about. But that doesn't always work.

For me, writing is a way of processing my life. Understanding it. Sitting with the difficult emotions that arise and seeing what they are telling me. Laughing over the amusing funny things that happen. Wondering about what I see and perceive around me. Thinking about and planing creative ventures and projects.

I was worried about getting through the holiday season this year since it was going to be the first Christmas and New Year's that Gregory and I did not celebrate together in forty years. But then I got to thinking about what a good (relatively) place we are in today compared to the hell our life was last year BL (Before-Lieberman.)

Also, I was able to celebrate with Gregory, just in a different way. I had my meals with him in the Lieberman dining room, we opened gifts, we had a Christmas tree in his room, we watched our usual holiday videos.

So now we are in a new year, a time of resolutions, a time of plans, a time to move forward. But can I do that when in many ways I feel like I am still "on hold" with Gregory as he continues to change and decline.

I visit almost every day for an hour or two and that cheers me up. I am in the process of signing up for Hospice for him which feels empowering to be able to control that part of the future which I am able.

But when I am home I am lonely, miss him so much, and feel lethargic finding  it is easier to not face my creativity, my projects, my day to day life maintenance. Gregory is still a very large part of my life and my focus. I am happy that he is still with me and that he is content, happy, safe, well taken care of.

So you can imagine that most of my writing is directed towards my Alzheimer's BLOG.
http://mhorvichcares.blogspot.com .

But what about me? Maybe another year will help me feel more my new self and help me get on with life. Maybe another year will help me realize those many projects I have created for myself. Maybe I'll get back into being a Supernumerary for the opera, Ringmaster for Michael's Flea Circus, Curator of a second museum The Small, Writer, Poet, Public Speaker? Maybe I will slowly get used to my life without the old Gregory, the old relationship, the old times together.

Or maybe I'll just continue to post more often on the Alzheimer's BLOG for now and see how life unfolds for me without too much pressure, too much fear, too much regret, too much frustration, too much anger. Maybe LIFE will sneak up and before I notice, I will be the new me?

michael a. horvich writes

Just a reminder. You might want to follow Michael's writing that is not Alzheimer's based: http://mhorvich.blogspot.com

A Letter to a Friend

Hi Susan. I am doing well. Still numb and very sad but at this point Gregory is being well taken care of. He is no longer the man you knew just a short while ago. I am grateful for his current home, one of the best Memory Care Facilities in Chicago, and am grateful to begin learning a new role as Secondary Care Giver. I do not have to go it alone but have a team of nurses, social workers, dietitians, doctors, therapists, etc to help Gregory as his needs continue to change.

Eventually I'll get on with my life. I never martyred myself to Gregory's disease and continued to have an identity of my own but did devote a lot of time, and energy, and love on an increasing basis as Gregory's needs increased. My identity, however, did include having a life partner with which to share my days. With him in his new home and me in the old one, I have to figure out who I am as a single person and what the angle of my days will look like.

Now, while I see him a couple of hours every day, I have lots of time on my hands and not yet the motivation to do anything with that time. I think the first thing I'll involve myself in is tailoring the condo to my needs and removing those things that met Gregory's needs. I will continue my writing and begin again to pursue a publisher for my memoirs which were organized at Ragdale during my residency in 2010. I hope to begin traveling again.

What I do not seem to have, and being good to myself since it has only been two weeks since this major upheaval, is any idea of what the future will hold. No goals. No ambitions. No hopes and desires. Except that Gregory be well taken care of and that I continue to be healthy and alive.

In some way, it is as though this moment has always been arriving and always leaving at the same instant yet doesn't exist in reality. Gregory is very visibly living in the moment, no past and no future and not really much of a present as we know it, and perhaps for now, I am living in the moment as well.

Love you, miss you, keep your guest room ready as one day I will arrive at your doorstep (with notice :-)

Fondly,
Michael

An E-Mail to C and M, Our Niece and Nephew

C & M

How about a visit Wed August 7 through Sunday August 11? We have theater tickets the next weekend.Want to spend longer so G and I could enjoy the area, spend more time with R & L, and more being with M & D. Of course we can never get enough time with you guys but understand that you'll be working during the week. No expectations for your being available during the week.

Interesting comment on thinking about what is still to come. Do you have any idea of what you might be looking for? You certainly are a success in your personhood, your real estate career, your love relationship, etc But I guess that you are still young enough to aspire to more, bigger, better, different, etc. 

For me, I feel that I can relax on that account because I have achieved much and have what I want (given G's Alzheimer's.) I do not find the need to prove myself or to "earn my keep" in society. Been there done that. While Michael's Museum was great and continues to be a wonderful legacy I am happy it is over. I also recently quit Ragdale because my efforts and volunteerism there began to feel like a job. Feels good to say goodbye to them while I hold on to the fond memories of my residency in 2010.

One continuing desire is to be a published author. Not self-publicaiton but bigger. So I guess I think about that but not obsessively and many not strongly enough to really get it done. 

I have begun my first attempt at writing fiction. Based on my real psychic past life regression experience which I think we have talked about. I am researching the time period of each "life" and trying to flesh out a chapter for each person I have been based on the regressions: Carny, Nun, Farm Wife, Rural Child, and Renaissance Baker. 

Travel might be a possibility but only will happen if I can do it by myself, with G being taken care of, and while OK it is a little lonely to do so without him. P has said it would be fun to travel together. She spent a long weekend with G and I in Mexico and I think we would get along as travel partners. 

But for the most part I am content to be at home with Gregory. I can fantasize about big trips to Europe or Japan etc but don't really believe that I have it in me, even with help. Maybe when the ship comes in and we can take R or P along all expenses paid it would make it easier, or with you and M. Fun to think about.

I would like to have more avenues to express my creativity but that seems back door to getting through each day. Sometimes I think that I can NEVER be creative ENOUGH! 

I find that Gregory and my world continues to narrow and we pull in but that is probably a combination of old age and his illness. We keep busy, see friends, entertain, are entertained, enjoy the movies on DVD and our theater and opera adventures. I do not feel the need to accomplish anything great or volunteer and give give give anymore.

G's birthday party was best attended ever with close to 50 people attending. All had a good time. But I find myself saying I need to cut back, after all planning, executing, and cleaning up after a party like that for a man who is almost 70 years old takes its toll. I am not crying "old man" but am getting older, aren't I? Next year fully catered or just having people in for fireworks, cake, and birthday wishes.

Agreed good and bad are one and both part of being alive. One must take the one with the other.

Regarding your question, we are doing fine. I am feeling a little constricted since we have no companion and I had gotten used to have some freedom and alone time. I expect more students will respond to our notice when they begin returning to campus.

Meanwhile I have enlisted R and J to be with Greg for three times so I can investigate Memory Care Facilities in the area. We are far from that need with many options available but I want to know what is available and get a sense for how it might make me feel to think about having to place Gregory if and when it comes to that.

As far as sad, I am sad but that is part of the "life of good and bad" we spoke of. Some days seem slow and dull and others are more fun. But sadness seems to ride on my shoulders as part of who we are today. If I can get through a day evenly without not to many "confusions" with Gregory, I am content.

As far as Gregory's sad, I think he is just getting more and more tired, a little more withdrawn, and more settled into being "less." But he is happy, appreciative, enjoys his food and TV etc.

All for now.

Love you both lots.

m

Scatology Part 2

Just when I have gotten over the previous dilemma, disappointment, impasse, lack of communication, misunderstanding, inability to discuss therefore solve or explain ... the SHIT hits the fan again.

Every hour on the hour I have been sending Gregory to sit on the toilet just in case he might need to move his bowels. I have tried to let him be more independent by not supervising. I go in after while, ask him to stand up, so I can check his progress. So far two small liquid movements. Several times nothing and that is good. NO accidents and that is even better.

I have stopped supervising his "wiping" having decided that if he is not as clean as he should be, so be it. We'll shower again tonight.

He just finished his 3:00 attempt in the bathroom. I came in several minutes later to see how he had done. Luckily he had not done anything because he forgot to pull down his underpants. There he was sitting on the toilet, folded toilet paper in hand at the ready, with his underpants full up.

I began to point out the problem but from the look on his face I could tell I was WASTING my breath talking about the situation. So I am writing this instead.

Again, not for your sympathy or your feeling like you want to help but can't.  I am writing this because my BLOG is SOMEONE I can talk to and get some closure and do the theoretical count to ten to calm myself down.

1 ... 2 ... 3 ... 4 ... 5 ... 6 ... 7 ... ... ... ... ...

Poetry

In the next few posts, I will be quoting from and/or discussing a few of the ten poems in Roger Housden's Ten Poems to Change Your Life Again and Again 2007.

I have found great delight as well as comfort in poetry as a way of understanding and dealing with my emotional and intellectual reactions to the daily interactions with Gregory's diagnosis of Alzheimer's Disease.

Very often, when I sit down to write about them, my words express themselves poetically. I read somewhere, wish I could acknowledge where, that poetry is as close to truth as one can get. The poet works painstakingly hard to select just the correct words and just the correct number of words to paint, yes paint, a picture of what he wants to express.

As a writer, I too lovingly struggle with this. If you have been following this blog and my writer's blog, you have seem some of my poetry and you might have found also some of my 6, 10, or 25 word stories. Telling a story in so few words, while called "Hint Fiction," is so close to writing poetry.

As a writer, I have become so obviously aware that other writers have written words in ways with which I could do no better. So I find that "quotations" from others are important to me. I mark them with a Post-it while reading then process them in writing (with citations.)

In the next few posts, it looks like I am combining all of this: quotations about poetry from others. Let me know what you think.

THINGS ARE EVEN

When things are "even," meaning going well, I neglect writing here. Then I feel guilty about not writing since April 11 (that's 6 days) so I have to be careful not to attach that guilt to when things are going well. Get my point? Meanwhile Gregory continues to "progress" and I continue to "cope." But life is good, love is good, and its beginning to look a lot like SUMMER!

Ragdale Revisited

Last year at about this time I was accepted for a two week residency in creative non-fiction writing at The Ragdale Foundation in Lake Forest. Acceptance was by competitive application and it was quite an honor to be accepted into their artist residency program. I have decided to republish my journal from that experience on my "michael a. horvich writes" BLOG. I can tell you, it was quite a respite from being an Alzheimer's Caregiver and I learned a lot about myself and who I am today. If you are interested in following my time at Ragdale follow this link. it will be posting between February 20, 2011 and the middle of March: RAGDALE REVISITED

I CARE!

I just noticed that I haven't written for five days. No excuses. But there are the Carmen performances, and the Michael's Museum at The Chicago Children's Museum meetings, and socializing with friends, and running errands, and preparing meals, and watching Netflix DVDs, and getting a few hours sleep. No excuses. With the change in the weather I find it difficult to acclimate to the changing number of hours of daylight and the "warm one day cold the next" and the weather change affecting how my back aches. No excuses. NO EXCUSES! It's not that I don't care. I do. But I am tired.

Difficult Decisons

Difficult decisions. I asked Gregory if he wanted to read my manuscript. This is the 140 page manuscript of my memoirs (if I can be so pompous to use that term) about Gregory and my experiences over the last seven years since his diagnosis of Early Onset Alzheimer's Disease. It has been sent to LaChance Publishing per their request to see my work.


There is nothing in the essays, observations, comments, dream descriptions, or poetry that Gregory does not know about but very often Alzheimer's "protects" the recipient with a buffer from remembering many of the difficulties and changes that take place over time. Also, I freely share my thoughts and feelings in my writings, many of which I do not share with Gregory not wanting him to needlessly feel sad because I feel sad.


Since the story is also his, how could I not at least ask him if he wanted to read it. And he chose to. In fact he is sitting at the kitchen counter, with a cup of coffee, reading it as I type this. I'll let you know how it goes. Meanwhile, please take a minute to leave a comment. It doesn't have to be anything special, just let me know that you have been here. Comment information is at the top of the blog and colored lavender. Thanks.

Manuscript

Today, after close to a month of working with my editor Karen Schindler, I sent my manuscript off to the publisher who requested a look at it. The title of the work, at least in my head, is GYROSCOPE: An Alzheimer's Love Story. The title is based on the scientific instrument, a gyroscope, which can spin in circles while maintaining its balance. That is what my live has been like since Gregory's diagnosis of Early Onset Alzheimer's Disease in 2003

Through essays, observations, dreams, poetry, and selected quotations I tell the story of Gregory and my situation. Hopefully this upbeat positive work, when published, will help others involved with loving someone with Alzheimer's feel confirmed, supported, and a little less lonely.

I must say that I am a little down right now at having gone through my recent life at least three times. Once experiencing it, twice writing about it over the last seven years, thrice with the process of editing and proofreading it quite a number of times before considering it ready to send. Not an easy task.

My hopes are up but not my expectations. The manuscript is created and delivered, the rest is up to the publisher. At least for now...

GYROSCOPE: An Alzheimer's Love Story

Continuing to plug away at the final edits of the book with Karen Schindler, my editor. Then off to the publisher, who requested a copy of the manuscript, to see what they think. Keep your fingers crossed!