Writing

Painting Class II

Today Gregory painted. For the second time at Lieberman. When I approached him early morning while he was watching TV in one of the wings, he was exited to see me. I asked, "Do you want to paint today?" He perked up even more and started babbling somewhere between "Yes indeed!" and "Wonderful!" If you were standing there you may not have heard what I did but Gregory's enthusiasm definitely came through.

We went down to the art room on the second floor and were greeted by Katharine who asked, "Do you want to paint today." Again Gregory definitely indicated that he did!

We got a paint shirt onto him (not easy) and laid out the glossy paper in the tray with the tubes of paint in a row above. Then the slow, tedious, wondering part began. Will this work? Will Gregory get involved again? Will he remember how to do this? Will he be successful at pushing the paint around? Will he have a second in a row success?

A glob of paint was squeezed onto the center of the paper but Gregory did nothing. We placed a hand onto the paper with the instruction, "OK, paint!" Nothing. Katharine moved his hand around as a way of stimulating Gregory's thinking/processing. Nothing. I took his hand and used his fingers to tap, tap, tap through the paint. Nothing.

At one point Gregory leaned forward, head down, eyes closed and sat still. Katharine and I waited. After a short while we began our encouraging again. We put his hand onto the paint and moved the hand in circles, up and down, tap tap tap. Gregory joined in a little but one could not say Gregory was painting.

It was difficult to keep Gregory's posture correct, to have him focus on the paint and paper, to help him keep his eyes open, to move his fingers and/or hands.

Katharine though that some peppy music might help so she put some Latin sounding, rhythmic music on the CD player. It did seem to help and Gregory was a little more alert and a little bit more focused.

We were aware that once Gregory's hand was in or over the glob of paint, the paint disappeared from view and most likely from awareness. We played with moving the tray closer, and further, and changed the angle. It all helped: music, tray movement, placing his hand and/or fingers in a way that he could see the paint beside it rather than covering it.

Gravity helped a little but you could tell that Gregory was getting more involved. Several times during his stopped inertia, we asked, "Do you want to paint?" and he answered either "Yes" or "I am painting."

It was interesting to see Katharine process her moves with Gregory. It was interesting to see how much effort Gregory was putting into getting his arms and hands to move and processing what he was supposed to be doing with this colorful blob of paint on this piece of white paper (Description is mine. Gregory was most likely blank but now and then something would click in.)

One move that was fun and seemed to help Gregory was Katherine taking one hand and me taking Gregory's other and in grand strokes moving his through the paint using large gross motor skills in time to the Latin rhythms. Gregory seemed to enjoy this and it facilitated his processing so he could continue briefly when we let go of his hands.

It took longer to get him started this time but we spent more time in the art room and he definitely had a good time. All three of us were pleased.

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?

The Good, The Bad, and The Ugly

Dear Family & Friends, 

Often you ask, "How are you two doing?" That is always a difficult question to answer if only because the answer is sporadic, erratic, changing, and cumulative as well as formative and summative. Not to mention joyful and devastating.

As for how we are doing, at the risk of being rude, check this ALZ BLOG. The highlights of our life live here. Maybe what the blog doesn't show as often as it should is that we are coping and getting through our days successfully even though Gregory continues to decline. 

I keep reminding myself to post some of the good stuff but usually the blog is a place for me to turn to to find a sympathetic ear if only it is my computer and to process my thoughts and experiences. 

Hope all is well with you and as always, Gregory and I look forward to seeing you.

m&g

A List of the Good

Have watched several great movies on NETFLIX like "Little Ashes" and "Departures."

Saw "Man of la Mancha" at Light Opera Works in Evanston.

Met with a friend for a 4 hour interview and looking towards the possibility of being included in her book on Gay Issues. More on this later.

Next week we are "light walking" as part of tech rehearsal at the Lyric Opera of Chicago in which we receive free dress rehearsal tickets to all of this season's operas.

Planning on having some of the condo painted after five years of gentle and loving use.

Tonight are going to the Carillon Concert at the Chicago Botanic Garden.

Continue to create interesting (if not photogenic) dinners and baked goods.

Got good reports on our recent whirlwind of yearly medical check up, eye examination, and dental cleaning.

Continue to feel blessed about so many parts of our life. 

Beep Beep Beep

Very often Gregory backs himself cognitively into a corner and once there cannot get out my help.

Very often I back Gregory into a corner and once there he cannot get out by himself or with my help.

I must be more careful to "signal when backing," BEEP BEEP BEEP.

A New Observation

THE SITUATION:
In dealing with the "day-to-day" of dealing with Gregory as he deals with his "good and bad days," I have made a new observation or maybe rediscovered a previous observation or some combination there-of. (This sentence, by the way, is an example of the dense direction my writing sometimes takes which is complex in a way that forces the reader to slow down and really focus on its meaning. Maybe this is what Gregory has to go through with all things now-a-days?)

THE BACKGROUND: Previously I have talked about how sometimes helping Gregory is a question of more or less. My intervening, or suggesting, or helping, or taking over is a question of making the situation more painful or less painful. More insulting or less insulting. More difficult or less difficult. But none-the-less painful, insulting, and/or difficult. Follow that?

THE SETTING:
Here we are now at the beginning of Fall, 2011. You and I are making subtle changes easily to adjust for the change in weather, not so for Gregory. What he might wear on any day takes finding or asking for the weather forecast, deciding how that might apply to what type of clothing to wear, selecting that clothing, getting into the clothing, and then deciding what type of jacket, if any, to put on before going for his walk. He is not always successful at doing all this himself so sometimes he will ask for help, other times I will offer help, and still other times he returns to the apartment three times until he gets it right. On the rare day, he is totally on target but a day or a week later, the season continues on its way and needs change and Gregory is unable.

THE OBSERVATION:
I realize that sometimes (notice SOMETIMES is used a lot if only because it is not NEVER and not USUALLY) when I try to help, I actually cause more problems for both of us. I distract him, inadvertently cause more confusion, or he doesn't understand the words I am using, or whatever. (I think WHATEVER might be my new mantra!) I find myself "jumping in" too soon to try to help Gregory avoid frustration but then I cause both of us to become frustrated. It is very difficult for me to watch him struggle through an activity or decision so I "jump in." Is giving him "space" and "time" to work through a situation "more difficult" or "less difficult" for me? I am beginning to think that I will be and we both will be better off by my slowing down before helping. Another approach would be to announce, "I'll be here if you need me, just ask." I could also sit quietly after letting him know, "I'll wait quietly until you need me." If the situation does not allow me to give him time and space, I need to keep my voice even, my temper in check as I say something like, "Here, let me do that. I don't mind."

THE EXAMPLE:
Now that the days are cooler, Gregory needs to put on something warmer when he gets up for his morning breakfast preparation and sitting at his computer to do the daily e-mails and news. We switched to his heavier work out pants and shirt which we call his "grays." But he has been having problems assembling his outfit the night before so it will be ready in the morning in the warm bathroom. He has not been able to get past putting the "grays" in the bathroom to the need for underpants, undershirt, and sox. Often he does not recognize those words or is unable to say them. I designed a sign with a picture of each item. To me it made sense that this would make it easier for him to remember everything he needed. It didn't. I explained. He struggled. I explained again. I didn't get angry but I know Gregory senses my frustration. That was when the observation came that sometimes my trying to help causes more harm than help. Sure enough last night he got everything he needed together and into the bathroom without my help or the sign's.

THE LESSON LEARNED (for how long?):
Best to wait until he asks for help or if his struggling goes on for too long or if his frustration level gets too high. This is while the activity is at the "SOMETIMES" level. The need for my constant awareness and monitoring of the ongoing interactions and activities our life is the difficult part. At a certain point in time, when the "NEVER" or "USUALLY" level arrives, I will take over and do it for him every night, change expectations and routine. Down the road, I will let him try it by himself again and if he is unsuccessful permanently be in charge of that function.

FINALLY: I will try anyway to do everything I can (for example the sign) that might possibly help and if it doesn't work I will do something else, I will just try not to beat myself  up for trying.

What Goes On In There?

I feel that I have a really good understanding of WHAT happens (or doesn't happen) in Gregory's brain that causes his outward appearances of Alzheimer's/Dementia. I have learned a lot by reading and on the Alzheimer's Association website including several on-line workshops provided there. I also have learned a lot from our neurologist and from a close family friend whose husband was diagnosed with ALZ about ten years earlier than Gregory.

What I have no grasp on is HOW at times the behaviors, actions, communications manifest themselves. I have put together the following way of describing it to those who ask. 

"At times I have absolutely no framework what-so-ever on which to hang an understanding of what took place during an interaction between Gregory and myself. Therefore I have no way of figuring out how to react or reply. This causes my confusion to compound his confusion and at times causes my response to be less than graciously caring. The caring is always there, but sometimes it is not as gracious as I would like it to be." 

Putting my feelings into words helps me better deal with the reality of any particular situation/or interaction and helps improve the response to any particular situation/interaction. Sometimes blinking and shaking my head in amazement helps me get through one of those types of interactions.

Purpose

An interesting observation: When Gregory has a purpose behind what he wants to say, the words just don't come. Sometimes he is able to work out the details of his idea and other times able to hint or dance around the idea. On the other hand, when he just says what he wants to say, without any purpose, the words come easily.

He talks to the cat with no problem. Often he talks to me with no problem: "Do you want music with dinner?" No problem. ""Time for lunch." "I would like a frozen yogurt from Red Mango downstairs." "Bedtime already?" Spontaneous ... no advanced purpose ... no problem.

Formulating a thought ... problem! Yesterday we were on Navy Pier, in the beer garden, enjoying live music. Earlier, when we were having coffee and sharing a cookie, he was trying to tell me about something, some building on the Pier. He couldn't get any further so we let it drop.

Usually I sit and attend quietly with eye contact for as long as he needs while he works out his thoughts. This time he announced, "Oh I can't get there. We'll have to ask Roger." This didn't make much sense either at the time but I let it drop.

On our way to the Beer Garden, he even looked at a map of the Pier but to no avail. While in the Garden he was back on the topic of the "building on Navy Pier." I guessed a little: "Michael's Museum?" No. "The Ball Room?" No. "The Winter Garden?" No. Etc.

Finally he said, "You know ... the garden." "Winter Garden?" I repeated. No. "At our condo?" No. "The Shakespeare Garden at Northwestern?" Y  E  S!

I was then able to put the pieces together. There is a Shakespeare Theater on Navy Pier. We have been to a few shows and they are always great. He was thinking that he would like to see one this summer. Apparently Roger had mentioned that he saw the review of the current Shakespeare play in the newspaper. Puzzle solved ... this time.

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.