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?

Just Not Fair

Periodically, I find myself uttering "Just Not Fair" and while not fully sure what I mean, it makes sense to me and perhaps lets me move on from the reason why I said it.

This weekend, knowing that Gregory was fully covered by helpers Manny and Alaksh, and while knowing that he is always very happy to see me, he would probably not realize my absence; I decided to go to Battle Creek to visit his family over the Easter weekend.

Besides getting to see the family, I looked forward to my first getaway in over a year! Just knowing I could get into the car and take off, with relatively no worries, stop when I wanted to for lunch, antique shop along the way, and get to spend time with people I love was wonderful. The food was good (Colleen is a great cook) and I slept well. Shared a lot of conversation with everyone and laughed a lot.

But driving the four hours and passing so many places that Gregory and I used to comment on or stop at found me muttering, "This is just not fair!" Visiting without him at my side, even when in the past it was getting more and more difficult, is something I would love to be able to do again. Just not fair that Gregory will never again be able to go to Michigan to visit his family. Just not fair that we will not be able to stop in Michigan City at the Antique Market Mall. Just not fair that we will not be able to visit "Chocolate World."

I find that when I am able to separate now and then, I do well. When I do not think about Gregory when I am without him, I do OK. When I do not think about the rest of my life and the life we had together while I am with him, I do OK. But when the two cross over, the tears rise and at times overflow.

When I am at Lieberman giving him a manicure, or watching South Pacific again (and again,) or helping him with dinner, or just holding hands; I can hold my own if I do not think of home, my current life, or the past.

When I am at home I enjoy the solitude of the condo; the ability to easily take care of myself without having to do much planning; choosing when, what, and where I want to have a meal; I can hold my own if I do not think of Gregory and Lieberman.

When I am truly able to live in the "here and now," much like Gregory is able to do, I can hold my own.

But over the Easter weekend, I found myself saying "This just isn't fair" a number of times as I helped bring family up to date on Gregory's situation, at the Easter dinner so lovingly and beautifully prepared and served, when I rolled over in bed in "our room" at Mark and Colleen's realizing that Gregory was not there with me.

There are so many "This just isn't fair's" that I could make along list. But I choose not to do so here or to do so now because I would not be able to hold my own and I need to!

Further Adventures in the Life

For several years, Gregory has had a book, really a perpetual calendar, of photographs of architecture of the world. Each day he would turn the page to reveal a new famous building from around the world. Often he would call me over to enjoy the photograph with him.

Many of the buildings he knows or we have visited. Considering that his language skills continue to disappear (almost all gone?) it has always been an easy way to "share" an experience by "looking" without the need for "talking."

Just in case you are uncertain about what a perpetual calendar is, imagine a 365 page book, with each page having the name of the month and number of the day but no day names and no years. So you can look at the building for January 25th no matter what the day of the week or the year.

For Christmas I found another book by the same publisher only with famous paintings. I thought this would be a great addition to his library and to his daily routine, especially because he continues to loose skills and therefore has fewer things to do.

Turns out that the arrival of the second book coincided with the beginning of his being unable to remember the routine for using a perpetual calendar. Even when reminded of the day's number, "Today is 25," he has been unable to follow through with finding the page that has January 25 on it.

Every morning he calls me into the living room to go through the steps. Every morning he does not remember what we talked about the day before.

I cannot, first thing in the morning, sleep still in my eyes and on my mind, teach him how to do something that he will never learn how to do. I cannot explain to him what I am feeling without hurting his feelings and I cannot continue to explain the explanation every morning.

So at the risk of making him "feel less" but with the benefit of helping me not be angry or frustrated every morning, I told him, "Every night before we go to bed, I will take over turning the pages so the books will be ready for you in the morning."

He was OK with that (at least on the surface but who knows what he really feels below the surface as he is unable to explain or describe his feelings.)

I wish that I could make these transitions (which I really don't mind making) more smoothly and not after anger, frustration, and unkind words to Gregory. I work at bringing my emoitonal reactions and my intellectual understanding closer but FUCK, I am so tired ... and lonely ... and sad.

Today

Today I feel:
     sad
     frightened
     lonely
     angry
     empty
     unhappy
     tired
     frustrated
     overwhelmed
   
Then I ran a very hot tub, turned off the lights, and meditated. I realized that it could be (and will be) worse, but for now OK. I realized that nothing MAJOR or DANGEROUS or INCURABLE or UNREPAIRABLE is happening or changing. I realized that the SUM TOTAL of it, almost ten years now, is what gets to me, PIECE by PIECE and at times PEACE by PEACE.

So now I am dried off and dressed. Writing. Feeling better. Thank you for asking!

Shut Down

Do you have any idea how lonely it is
To suffer silently?

Dinner time music is not joyful but
It covers the lack of conversation.

How many hours have I stared
At the kitchen cabinets?

As I sit in silence
Unable to look at him.

Shut down. Lonely. In pain.