No Apologies Necessary

Kate Swaffer shares some of her thoughts, memories, and fears on being diagnosed with Dementia. The video she created is moving and will help put you in her shoes.
http://kateswaffer.com/2015/09/03/women-and-dementia-3-dam2015-day-3/

This is the reply I wrote to her:

Dear Kate,

I wish I could take all your pain, your fears, your guilt and smooth the edges. I wish I could help you focus only on the strength of your love for those around you and for all of us who have come to know you.

I wish I could help you focus only on your family's and our love for you. I want to say, "We love you as you are and as you will be. You have given us so much with your perspective and your love, let us give some measure of peace of mind back to you in exchange." 

I am barely able to type this for the tears from your video as they help me to begin to understand what Gregory must have gone through but was unable to share with me. His inability to share was due to his loss of language.

Also, I believe that the Dementia/Alzheimer’s blessedly put up a buffer to the reality of what he was going through. In addition, the safe zone in every day living which I was able to create for him gave him peace. 

So I love  him with all my heart, more each day, and say it was and  is my duty to be there for him as he always, even today, has been for me. He is not a failure, he owes no apologies, he is love. He is my life.

I have no control over the details so I will embrace him always as he is, as he will become. I love him More Than Ever (the name we together gave our trust and educational foundation.)

Gregory knows, and I often tell him, how much I love him and I hope he knows that there is nothing in our relationship, in our 40 years together, in the world that he needs to apologize or feel guilty about. 

I also know he has forgiven me my trespasses and I do not feel guilty. There are some things I would have done differently during our journey with Dementia/ Alzheimer's but I did the best I could, and everyday I learned anew, and I did it with love in my heart.

My “Intuitive" described the hole that has been torn out of my chest, around my heart; with its pain and loneliness and tears; as the sacred place where Gregory and I can still be, and always will be. together. I will not try to fill that hole, I welcome it. 

Kate, may you find peace and comfort in your great love of family and of life and may you be reminded that all things are impermanent and this can be the joy of life as you quietly sit with it today and then tomorrow. I don't "know" you Kate, but I continue to come to fall in love you!

Fondly,

Michael

Monday at Lieberman

I walked into Gregory's room around 2:00 today. He and Manny were watching the Food Channel. I loudly said, "Hello!" and gave Gregory a moment or two to focus. When he realized it was me his face lit up like a 100 watt light bulb, he opened his arms to me, and said, "Oh. It's my Michael."

I melted.

When I hugged him he actually hugged back. He was so alert and engaged for the entire visit.

Appreciate the Momentary Monumental Magical Miracles!

To Paint or Not To Paint

That is the question. Katharine, Gregory, and I have tried painting in art therapy for approximately five sessions. Some were a little more successful than others but for the most part Gregory's engagement rate has been minimal.

When he did go through the motions of finger painting he did not focus on the difference his hands and fingers were making in creating patterns of the color on the paper. There is a disconnect between what his hand do and what his eyes see.

We have tried the finger paint with different types of plastic gloves on a piece of paper taped to a tray. Today we tried an easel with crayons. We also tried Cray-Pas oil pastels and markers.

Gregory goes into a "I need to disappear now" shutdown, the nature of which I do not fully understand. When he cannot function, or possibly cannot piece together the necessary skills, he closes his eyes, bows his head, and sometimes leans forward.

When asked, "Are you sleeping?" he opens his eyes and said, "No." But when we try to re-engage him in painting he "shuts down" again. We tried moving his hands and arms through the motions. Not successful.

We sat quietly and waited for three for four or five minutes to see if he would respond to the Cray-Pas stick in his hand. Not successful. Katharine tried to position a marker in his hand like one would hold a pen and while he was able to do so, it lasted only for seconds.

Every now and then his fingers or hand would make a slight movement, or spasm. Perhaps the muscle memory cues that his brain was sending got through but only for a brief second.

Kathleen tried a drum filled with steel beads that makes a rattling noise. Gregory opened his eyes to study where the noise was coming from but then shut down.

Next I noticed that he placed his hands in a "playing piano" position with the drum so we got a xylophone off the shelf to see if Gregory could use the padded sticks to at least make some musical noise. Not successful.

So it looks like our nobel experiment was well worth the time but not the results and perhaps only served to frustrate Gregory. We will probably discontinue "painting" but I have to think about the possibility of putting him in front of a piano (or possibly an electronic keyboard which would be easier to play) and see if he would at least make some musical noise. I hesitate if only because I do not want to open unwanted doors to unnecessary emotions.

Painting

I arrived in the Art Studio at Lieberman a few minutes after Gregory and Manny arrived. According to Katharine, the Art Therapist, Gregory was in a good mood and in his way was joking with her. Then he was looking around the room and asked for me by name, "Michael?"

His response to my arrival was quite animated and made me feel warm all over.

The session got off to a difficult start as Katharine and Manny and I tried to get the table which Gregory would be using situated. We put it up on risers but it was too high and Gregory's chair still couldn't get under it.

Then we tried a hospital tray table on wheels but it was broken and couldn't be raised or lowered. The next tray table we tried worked perfectly but by then Gregory was a little frustrated, a little confused, a little angry, and mostly muscularly tense. Who would blame him.

First we worked at getting him to loosen up his arms and hands which seemed to take 5 or 10 minutes. When we began painting he responded well. There was a lot of down time thinking, and a lot of down time shut down because of to much stimulation. But when he got his hands moving it was with purpose.

Often we could not tell if he was looking at the paper while painting. Perhaps the feel of the slippery, sliding finger paint under his hands was enough. Also this time we tried loose thin plastic food handler gloves instead of the tightly fitting latex medical gloves. We couldn't tell if that helped or hindered. Next week we will go back to the medical gloves.

Also, for next time Katharine will try keeping the tubes of paint in the refrigerator to see if the tactile cold touch of the paint might help Gregory focus more closely on what his hands are doing.

During the session Gregory made appropriate comments or got the giggles. I call these moments of insight on his part, "Mini-Miracles!" I asked if he had a good time and I asked if he would like to paint again next week. He replied "Yes." to both.

In leaving I said, "Gregory, say 'Thank You' to Katharine."

"Yes," he replied.

I repeated this a couple times and each time he replied yes.

Finally, I said, "Thank You," several times. He said, "Thank You," back.

I said, "Katharine," several tines. He said, "Katharine," back.

Then he focused careful on Katharine's face and smiled and winked as if to say, "Katharine, you are in on my secret, aren't you!"

Always

Yesterday at Lieberman the Sunday afternoon entertainment was provided by Eraina on the piano. After playing several classical selections, she passed out a booklet of tattered, well used, but large print readable, clearly numbered lyric pages. The songs she selected were good for the "crowd" and I was surprised how many of the attendees were able to read and/or sing along.

One in particular moved me to tears as I sang it to Gregory. What made it poignent was that he looked at me, with intense eye contact through the entire song. Often he has trouble focusing, let along for a long period of time. This time he was mine, and I was his. He even knowingly shook his head "Yes" several times. We held hands throughout.

Here is the song:

https://soundcloud.com/mhorvich/always
as sung by Mandy Patinkin

Opens in new window. Click red arrow in upper left hand corner to hear song.

ALWAYS

Everything went wrong,
And the whole day long
I'd feel so blue.
For the longest while
I'd forget to smile,
Then I met you.
Now that my blue days have passed,
Now that I've found you at last - 

I'll be loving you always
With a love that's true always.
When the things you've planned
Need a helping hand,
I will understand always.

Always.

Days may not be fair always,
That's when I'll be there always.
Not for just an hour,
Not for just a day,
Not for just a year,
But always.

Dreams will all come true
Growing old with you
and time will fly
carrying each day more
than the day before
'til spring rolls by
then when the spring  time has gone
then will my love linger on 

I'll be loving you, oh always
With a love that's true always.
When the things you've planned
Need a helping hand,
I will understand always.

Always.

Days may not be fair always,
That's when I'll be there always.
Not for just an hour,
Not for just a day,
Not for just a year,

But always.

Not for just an hour,
Not for just a day,
Not for just a year,
But always.

Oh My Heart

Yesterday when I arrived to visit Gregory he was being changed by the aides. I didn't let him see me so as not to complicate the situation and waited in the hall until they were finished.

Changing Gregory's diaper (I hate using that word) is at most , when he cooperates, a difficult situation. He is tall, weights 180 lbs, and has to be moved to his bed using a hoyer lift. A sling is inserted behind his back and brought up around his legs. The ends of the sling are attached to the machine and he is lifted into the air, swung around parallel to the bed, and lowered into place.

Then the aides take off his pants (and often his shirt,) clean him up, and put on a new diaper. This is done by rolling him from one side to the other. The aides have to do all the work because he cannot roll himself. Then they put on new clothing, reattach the sling, lift and swing, lower him back into his wheel chair.

I would guess that this is not only a little embarrassing (although I think Gregory is used to it by now,) but uncomfortable and at times painful. Depending on Gregory's "state," it is also frightening for him to be dangling in the air and he becomes resistive, known to swear, kick, and/or struggle. The aides are kind and gentle and are able to "talk him down" but as I said, it is not an easy activity for Gregory or the aides.

That described, yesterday after he was back in his wheel chair, I came into the room. "Hi, its me!" But Gregory was still "recovering" from his ordeal and was unable to focus. I tried to put my face in his line of vision, continued announcing myself, but he was still unable to focus. I think that he was actually unaware that I had arrived.

Finally he did a double take, and I mean a double take like in the movies, and he was able to focus on me, realized who I was, and a large smile came over his face.

Here comes the title of this post: He looked into my eyes, with this oh so pleased look on his face, reached out towards me and said, "Oh, my heart!"

I melted.

Interesting

Tonight I thought about Gregory and my increased theater activity. During the 2012/13/14 seasons we will have subscribed to Lyric Opera of Chicago (8,) Goodman Theater (6,) Shakespeare Theatre (4,) and Light Opera Works (4.)

We have been to individual shows at Mercury Theater (1,) Writer's Theater (2,) Northwestern Interpretation Center (2,) and a few others. We have seen musicals, opera, serious drama, concerts, and master classes.

Why has there been this dramatic increase in our attendance in the theater world? So far we have seen "Sweet Charity" erroneously find and loose love, witnessed a strike for a 7.5 cents raise in "Pajama Game," saw "Cesar" killed on the Ides of March, followed a dysfunctional family as they worked out their problems in "Other Desert Cities," joined a fight for gay rights in "Teddy Farrara,"  spent "Sunday in the Park with George," learned to tell the truth at the "School for Lies," lived happily ever after in "Camelot," dreamt the impossible dream with the "Man from LaMancha," asked for more sir with "Oliver," followed the bread crumb path laid by "Hansel and Gretel," danced Musetta's waltz in "La Bohem," JUST TO NAME FEW.

Pretty quickly I realized why this increase. For both Gregory and me, it has been important to get out and enjoy ourselves. We usually go out to a nice place for dinner then the theater. More importantly I think it has helped our world continue to be larger as Gregory's abilities, language, communication skills, and experiences etc continue to grow smaller. The nature of dealing with Alzheimer's Disease is that the person afflicted can do less and less and the interaction with life becomes more narrowly focused.

Experiencing the magic of theater has, as the song goes in "Chorus Line," allowed things in our life to continue to be beautiful.

Everything was beautiful at the ballet.

Graceful men lift lovely girls in white.

Yes,  Everything was beautiful at ballet.

Hey! I was happy... at the ballet.

Everything was beautiful at the ballet.

Every prince has got to have his swan.

Yes,  Everyone is beautiful at the ballet.

Hey!... I was pretty... 

At the ballet.

Everything was beautiful at the ballet.

Raise your arms and someone's always there.

Yes, everything was beautiful at the ballet,

At the ballet,

At the ballet!!!