Martha

I have posted a number of times about Martha. She has been at Gregory's table for breakfast, lunch, and dinner for the last 20 months. She is always friendly, and an interesting conversationalist even if the conversations are made up or at times do not make sense. Often she is very insightful into a situation or will make an amazing "pronouncement" about life.

On the day I went back to clean out Gregory's room, I stopped by her room to see if she would understand that he had died. I kneeled down next to her wheelchair and said, "Martha, you know Gregory?" She said she didn't.

"He sat next to you at the lunch and dinner table."

"Oh, that dear boy, yes."

"Well, I am sad to let you know that he died."

"Oh, come to my room to see the new book I am reading. It is another detective story!"

So I left it at that assuming that Gregory's passing did not hit home with her and there was no need to pursue the matter further.

Fast forward to the Memorial Celebration at Lieberman. Staff helped three of the more aware residents join the party and a number of family members brought their mothers.

They were told that it was a memorial for Gregory who had died. When Martha saw the photograph of Gregory it hit her and she began to cry. I held her and we rocked.

"Oh my," she said through her tears, "Oh my. He was such a dear boy. I saw him at the church this morning. All laid out so beautiful, and resting. He looked like an angle." She sobbed, crying some more. "I told him to put his coat on that it was cold out. Why did they ever let him go out into the cold?" (All in her imagination.)

I assured her that Gregory was with God now (I find I've been using expressions like this for expediency) and we should be happy for him. She agreed and settled down to a glass of lemonade, some cake, a few pieces of fruit, and a handful of chocolates.

Martha is one of the people I will have to go back to Lieberman to visit.

The Sewing Box and The Sponge Bath

Hi Barbara,

Picking up his ashes yesterday was not as hard as I thought. Gregory is gently resting in the sewing box of his Grandma Carrie, his father’s mother. 

Gregory tells the story of how sorry he was that he was not able to see her when she died and was not able to go to her funeral because he was across the country at school.

He tells of their time together on overnight visits when he was a young boy, when they would sit on the font porch of her house, across the street and a little way down from the Goshen, Indiana court house. 

Gregory loved to play by the court house, walking up and down the grand stairs, and balancing his way around the building on the first floor parapet. 

They would watch the sun go down, and the cars go by, and talk of things. They would always have popcorn for dinner and oatmeal for breakfast. 

She was either poor enough or stingy enough (and probably a little crazy enough) to not bother wanting to light the water heater. She would boil a pot of water, let it cool down, and instruct Gregory how to take a “Navy Bath,” also known as a sponge bath. 

She would instruct Gregory saying, “First you wash as far up as possible, then you wash as far down as possible, then you wash possible.” 

I had ordered a bio-degradable box covered in handmade paper with dried fall leaves affixed to it. For me it was the best of the available choices (and there were many.) 

The night after making his arrangements with The Cremation Society of Illinois, I was sitting in the kitchen folding dusting rags (just realized the significance of “dust to dust”) and it came to me (might you say insight or might you say Gregory or Carrie whispering to me?) that I could use Grandma Carrie’s sewing box for Gregory’s ashes. 

And so the beautiful handmade paper box is now lovingly placed in Carrie’s sewing box and they are both resting peacefully. He loved her very much and is happy to know that his resting place, for now, is with her.

P.S. This will be today’s post that was written especially for you and Les.

Whose Story Is It?

I continue to follow and learn from Kate Swaffer, a professional diagnosed with dementia who lives in Australia. Check out her latest blog, "Who's Story is It?" http://kateswaffer.com/2015/05/19/whos-story-is-it/

These are my comments to her:

For one, I am very excited about two seemingly current movements: 1) Being more careful with "language" when describing people with dementia and recognizing that many of the "Inappropriate Behaviors," "Violence," "Acting Out," etc are more indicators of discomfort, fear, frustration, etc of not being able to communicate using the vary language that we so carelessly use! 2) Hearing from more people who have been diagnosed with dementia is so important to get a REAL picture of what is going on in their lives and on how they are and/or should be treated and cared for. I have to admit that as an educated, knowledgeable, caring person I almost didn't see being a care giver from that angle. In my case, Gregory was unable to communicate his needs but I did know him so well after 40+ years of a wonderful relationship I was able to know (for the most part) and meet his needs in a loving, respectful, honorable way. Thanks Kate for being there!

ANNOUNCING: A Documentary

Very pleased and excited to announce that Gregory and I will be featured in a documentary about our Journey with Alzheimer's as produced by a team of students from Chapman University in Orange, California including Gabe Schimmel who is the son of one of Gregory's college chums and one of Gregory and my favorite long time friends.

Gabe is currently studying film production with an emphasis in editing and is enrolled in program called Community Voices - a documentary filmmaking course that partners students with various non-profit organizations across Orange County and culminates in a 10-15 minute documentary film. 

The initial goal is to produce a short promo video that the organization can use for it’s own purposes, but the actual documentary is character - based and is not produced in conjunction with the organization - the only requirement is that it be related to the social issue/cause the organization is championing. 

His team has been partnered with the Orange County Alzheimer’s Association, and the team asked to make their documentary about Gregory and my story. Gabe says, "The way you've taken care of Greg is touching in way I can't quite describe in words, suffice to say that I think your story has to potential to inspire and give hope to a lot of people. I think we have the resources to do your story justice, and I think it's a story that needs to be told."

Once the films are completed they don't just stay in the classroom - they run on PBS and screen at various film festivals, how exciting is that?

Shoulders

I have been developing a number of "sound bites" to use when people ask me about Gregory and how he is doing and how I am doing. One one hand I could tell long stories about the joys and sorrows of his current condition. And I probably have told them each often! 

So I have decided that less is more and that once the story has been told here on my BLOG I do not need to keep telling it, let alone reliving it. I think this is probably a good thing: Think More, Talk Less.

SOUNDBITES:

Gregory is fine, he's good. (Enough said?)

He is even and that is good.

He is happy, contented, and safe.

Gregory is no where near the man we used to know, but his spirit and soul are still very much in tact.

His CONDITION is much worse but his SITUATION is much better!

My heart is light knowing that Gregory is being well taken care of at Lieberman.

We have much for which to be grateful!

We are blessed. The Universe continues to line up behind us.

I will always carry Grief on one shoulder but have Joy and Comfort on the other.

Today At Lieberman

I greet Morse. "Hello." He only speaks Russian. "Shabbat Shalom," (Good Sabbath) he replies. P.S. Today is Monday not the Sabbath.

"How are you today?" I ask the Doctor (a resident.) "I'm here!" he replies. "Zaigasunt," I tell him (be healthy.) "That is a good idea!" he says smiling.

Betty's son is visiting. He tells me he is here for his daughter's (Betty's grand daughter) Bat Mitzvah. "Oh how nice," I reply directed towards Betty. "What is your grand daughter's name?" Betty thinks for a while, "I don't remember." She says looking at her son. "Lara," he replies. "Oh yes, a very forgettable name," comments Betty.

In the hall, Lucy sits on a chair next to the nurse's medicine cart. The nurse is busy preparing medications for other residents but you can tell that Lucy is getting great comfort just sitting next to the nurse watching her work.

In a corner, the social worker is talking with an upset woman resident, holding her hand, assuring her that her son will come to visit soon. "I hope so, I hope so," the resident says. Whether true or not, the exchange helps to calm the woman.

Manny is helping Gregory eat. Manny places some carrots on Gregory's fork and tells him, "Here, put the carrots in your mouth." Gregory concentrates deeply, slowly lifting his weighted, bicycle handle looking fork towards his mouth, keeps going past his mouth, and tries to feed the carrots to his forehead. Then he looks cross eyed, laughs, and put the carrots into his mouth.

New Language

Gregory has created a new language out of his Alzheimer's.

Whether it is too cold or too hot in the condo he asks for "another tick" on the furnace.

For breakfast he likes "thin thins" with honey meaning the new thin round bread that has appeared in the grocery stores.

He let me know "Michael, Ding, Ding, Ding" happened in the kitchen as the oven reached temperature and we could begin making some cookies.

Various waves of the hands try to narrow down his message.

When he needs help with the computer he announces, "It happened again!"

Showing is always easier than telling, which ironically is the professional writer's mantra.

"Over There" represents everywhere that isn't here. For example, he is looking forward to going over there (Mexico,) he saw a neighbor over there (in the lobby,) he wants to go over there for dinner (a restaurant we haven't been to for a while,) we need to call one of his friends over there (in California? ... John?)

"You know!" said urgently after his having tried to explain something but not being able to come up with any words at all, just huffs and puffs and hems and haws means, "Michael, please tell my story for me."

Sometimes we both get the giggles at the new language he comes up with and sometimes I cry.

I Don't Mind (Really!)

We, Gregory and I, have a collection of seven (count them) seven Miniature Christmas Trees (approx 6" to 8" tall) decorated with miniature ornaments. They are lined up against the wall on the dining room table (which is in the living room) currently Christmas Central (usually Gregory's desk.)

We have had a number of small parties (more at homes) and one large party (friends, neighbors from the old neighborhood, and neighbors from the condo where we currently live) this holiday.

At these parties, Gregory gets to tell his stories (with great difficulty) and he enjoys being able to share. Usually I tell his stories but there are a few (a very few) that he is still able to tell (wave his arms at and stumble over.)

One of his stories (when we have company over) is to tell about (and show) his recent oil stick paintings. This is a new skill added since he has lost so many (like playing his piano or doing cross word puzzles.) He takes great joy in painting (loves his mentor artist Nancy) and enjoys sharing with our friends and family who sometimes offer to buy one (but he isn't ready to sell any yet.)

Another story is to point out (show) the line of variously sized and colored, heavy mercury ornaments which are hung (artistically) along the fire sprinkler pipe which runs across the living room (which is really The Great Room or the Loft Space.) He calls it (when he can remember the name) his Christmas Pipe.

Another story popped up recently (which was a surprise to me) but which I let pass. He was showing a guest the miniature Christmas Trees lined up on the desk/table and pointed to one saying, "This is my favorite. They (the miniature ornaments) are very old and belonged to my Grandmother. I love these the most and will never let them go.

I don't mind. Really I don't. Turns out that the miniature Christmas Tree with faded, antique, tiny round, multi colored ball ornaments to which he was referring (which Gregory and I have collected over the more than thirty five years we have been together) has now become something inherited from his Grandmother and which he will never let go. I was surprised. I am sad. But I understand (and I don't mind.) Really.