FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Saturday, July 31, 2010
Gregory has begun painting with oils with Nancy Rosen as his teacher. More on this later but wanted to share an e-mail reply I helped him with to some questions asked by another painter friend Susan Wiseman.
I appreciate your comments. When I paint, I sit quietly for a few minutes then start to try any shapes or movements that come to mind. I don't really have a "plan." Nancy, my teacher, sometimes puts out a tray of colors for me to consider.
I just "play" with the shapes and colors as they arrive in my mind and on the canvas. Sometimes I make large gestures and other times I concentrate on small areas with small movements. The nice thing about using Oil Sticks, is that you just pick one up, refresh the tip, and draw. It is as if the stick is an extension of your hand.
You can put thin or thick or in between lines on the canvas and then you use a rag or paper towel dipped in Turpenoid to blend, thin, spread ... or even erase what you have done. Oil Sticks are the same as oil paint only in stick form not in a tube and not applied necessarily with a brush (although you can use one if you want.)
The "Sun" was my first on a larger paper (25x25.) Basically I "just did it." As it grew, one element led to the next. Just spontaneous progress based on what went before. One guide line is "NO WHITE SPACE TO BE LEFT BEHIND." I had this big empty space in the bottom right and after looking at it for a while, decided that based on the rest of what I had done, I wanted a big splash of "something" and decided on yellow. Then I "played" with adding the orange in a scribbled fashion. Funny having to think this through after having done it. Hope this helps.
Gregory (with Michael's help)
"The Sun" Oil on gessoed Stonehenge paper. 25"x25" July 2010
YOU MIGHT WANT TO VISIT THESE SITES:
Nancy Rosen's Studio
Susan Wiseman's Paintings
Friday, July 30, 2010
In the dream, Gregory was trying to make a group of friends understand an architectural concept and was having great difficulties constructing his thoughts. The friends were asking questions, seeking clarification, and challenging some of what he was saying. Gregory continued to struggle to get his words together and out in a coherent stream and became more and more frustrated. He looked to me to help him tell the group what he was talking about but I couldn't understand what he was trying to say either.
I tried to get the group of friends to slow down and be more patient. I tried to get Gregory to slow down and be more calm. I tried to understand what he was trying to share. To no avail. I continued to feel the pressure mount, probably somewhat surreally, as dreams like to do.
Perhaps an added pressure on my dream is my current work on getting my manuscript together for review by a publisher that has requested to read it. In my panic I decided I couldn't do this. Gregory is going to get much worse then I can begin to imagine. How can I continue to remain supportive and optimistic and joyful when I am feeling angry, pessimistic, and fearful?
I decided that I was going to quit writing. Quit trying to share my experiences with Gregory and Alzheimer's. How can I think that I can really get a handle on this disease, on our difficult days, on his brain playing serious games with his thinking, continued language loss, more difficulties with day to day activities? How can I re-live everything three times: First the experience. Next dealing and thinking it through. Third, writing about it. Too much. Too much! I finally fell asleep and rested fairly well until my alarm went off.
Later that morning the lesson came to me. "You can only do what you can do." Release the pressure. You have been able to adjust and compensate so far, you will continue to do so. One memory loss at a time, I will figure out how to approach the next one when it happens. I will be more observant about what Gregory can tolerate and what he cannot and not put him in difficult situations.
Our life, my life, will change as his life changes. Our friends and family are supportive and aware, it was only the dream that made it feel ugly. My fear of the future kicked in. My fear of my inadequacies kicked in. But the future isn't here yet, so relax and enjoy today! And I continue to do a good job being supportive of his needs and mine, so relax and enjoy today. That was my message this morning. Not bad for a night's work!
Tuesday, July 27, 2010
YouTube - Bonnie Tyler - Total Eclipse of the Heart
YouTube - Total Eclipse of the Heart: Literal Video Version
So that's the happy and the sad of it!
Monday, July 26, 2010
With Alzheimer's each day is a surprise, each interaction can be a surprise, sometimes each moment can surprise you. Then for moments or hours or if you are lucky for a full day, the disease disappears and things seem so normal and balanced.
Sometimes the surprises can speak of joy and love and other times they can speak of sorrow and loss. While the smiles and laughter and kisses and magic remain, the joy remains. As they slowly disappear, and it becomes more difficult to "live out loud" as the lyrics tell, the sorrow looms larger.
But either way I hold on to the joy and love and as the lyrics say, "I will be with you, I will go with you." And we will be surprised together.
Take the long way, by the fountain in the park. Surprise me.
Skip the play-offs, learn a different party trick. Surprise me.
But never surprise me by losing your laugh,
Take us higher, climb a mountain, steal a cloud.
We have nothing to fear but peace and quiet.
Anyway you choose, surprise me.
Thursday, July 22, 2010
Wednesday, July 21, 2010
Sunday, July 18, 2010
After his mild reaction with an "Oh Shit!" Gregory unmade the bed and remade the bed correctly. He wasn't upset or angry and the curse word was more a realization than an emotional reaction. As usual, he faces each new day, each new confusion with grace and calm. This is my "I am so grateful for how well he deals with his Alzheimer's" part.
Every night after reading for a while, when it is time to turn off the lights and go to sleep, Gregory has to relearn the process. Each bedside table has two switches attached to the back corner of the table. The top one turns off the table lamps. The bottom one turns off one set of the room's side lights. I flick off the switches without thinking.
When it is Gregory's turn to turn off the lights, he first feels for the switches, isn't always sure what his fingers are telling him, so he leans up in bed to look behind the table to get a visual fix on the switches. He likes to turn off the lamp first and then enjoy the room's ambience with only the side lights on. Finally he uses the bottom switch and the room falls into darkness.
I can feel the energy of his thinking through the process. Sometimes I can see the process as he flicks the lights on and off, sometimes three or four times, until he understands how they work and until he can get the order of switching correct.
Again, I grieve and fear for the future that he has lost such a simple ability but I am grateful that so much of the wonderful man I have loved for 32 years is still there.
Friday, July 16, 2010
Wednesday, July 14, 2010
The New York Times
Rules Seek to Expand Diagnosis of Alzheimer’s
By GINA KOLATA
Sunday, July 11, 2010
Life has been your art.
You have set yourself to music.
Your days are your sonnets.
Saturday, July 10, 2010
A Play in Three Acts
Scene: Gregory is sitting on stool in kitchen while I am watering plants.
G: What day of the week is this, Sunday?
M: No, tomorrow is Sunday. And yesterday was Friday. So what is today?
G: WOW, I REALLY am ahead of myself!
M: No, only one day behind. So what is today?
G: You tell me.
M: Do you know how much I love you? Without you I'd have nothing to write about!"
Scene: Lunch time and G's preparing a cold plate of tuna salad and raw veggies.
G: (calling out) How do I warm this up?
M: (going into the kitchen to see what "this" is) How do you usually make toast in the morning?
G: (points to toaster oven and begins to open door)
M: Try again.
G: (looks around) Oh! (pulls out regular toaster and continues preparing lunch)
Scene: Kitchen after lunch. Gregory is cleaning his dishes.
G: (calling out again) What do I do with these pips? (Referring to the cherry pits and meaning where do they go: recycle, garbage can, garbage disposal.)
M: In the YUCK! (Affectionate nickname for "dirty garbage" vs "recycle")
Thursday, July 8, 2010
It's the OTHER TIMES that also matter and cause life to limp in fits and starts, for both of us. When he can't explain what he wants to say and language fails him, forgets which is the knife and which is the fork and how to use them, heads towards his pancakes with the salt instead of towards the hash browns, goes to take out the garbage and leaves it behind on his way out the door, sees 70 degrees on the outside thermometer as only a number isn't sure how to dress. These are the bad times, the times that make life seem a little crazy.
Tuesday, July 6, 2010
So after I answered G's question I probed a little further to see if I could figure out why he was asking. I couldn't tell if he didn't know the date, if he thought it was the 4th, if he just wanted to know what the "red" was, or what.
In my questioning he wondered out loud, "How did it get to be 6?" He gestured towards the closet in the bedroom where his "Day-At-A-Glance" calendar lives so I knew what he was talking about. "Maybe you didn't tear off yesterday's page?" I replied. Sure enough that calendar was still on the 5th. But I am not sure what this had to do with the computer, the anniversary, or the date.
If this writing seems convoluted to you, I have done that on purpose so you could experience the "flush" that comes over me in these situations where communication seems to have arrived from the Twilight Zone. It serves as a slap in the face to remind me that out situation is far from normal and of what the future holds in store for me as less a life partner and more a caregiver. Gregory IS NOT crazy but sometimes our interactions are.
Another purpose of this writing is to point out how difficult even the most easy, repetitious, everyday, since the beginning of time activity can become. Overwhelming, complex, and confusing for both the person with Alzheimer's and for those people who care.
Excuse me, I have to stop writing now as G is confused (again) over how to make the bed. The good thing is that I know what he needs and tomorrow he will probably remember how to do it by himself, or maybe not.