Shirley

Every day for the last two years, a good will emissary has stationed herself in front of The Lieberman Center's main entrance for a good part of the day. Outside on good days, just inside the front door on inclement days. 

With a somewhat raspy "Hello," or "How ya doing'?" she greets the comers and goers. Often the conversation will drift into the inevitable discussion of the weather: too cold, too hot, too much sun, rainy, etc. As she gets to know you she will add a personal comment line: "How's your friend doing?" Or "Nice haircut."

Once in a while I would offer and get accepted to administer a loving kiss, usually with a "scratchy beard" comment. She was grateful when I remembered her birthday (which is on Vetran's Day) with a flag.

Shirley has been living on the sixth floor nursing care unit but in her wheel chair is fairly active, very alert, intelligent, and wise!

This is what life at Lieberman Center is like. So many "friends" and family of friends, and nurses, and CNA's, and workers of all kinds. Loving, happy to see you, usually smiling.

As of today, there is only sunshine at Lieberman's front door. Shirley left us this morning unexpectedly. She had not been ill that I know of.  Having passed herself, she will be missed by her many passers by.

Today at Lieberman

At dinner with Gregory, "I love, I love, Forever, Forever, Forever!"

A Conversation

Dinner time at Lieberman.

Gregory chatting with table mate Martha caught in a video by Manny.

• • •

G: "Mumble, mumble, mumble, mumble."

M: "No you have to talk if you are going to speak." Sigh, "Oh what would you have to say anyway?"

G: "No, mumble, mumble, mumble, mumble."

M: Look of exasperation.

Dinner Conversation

I told M, "Gregory and I like you!" And we do. She calls us her 'family,' and easily calls us  'darling' when talking to us.

"Why?" wondered M.

"Because you are a very nice person," I replied

"Well I should think so. A distant cousin said she didn't like me. Well I told her that was her loss because I am very likable. Once a woman I knew asked me if I was stupid. I told her 'Well not yet certainly, perhaps some day, but not yet.' So thank you for asking. And thank the chair as well while you are at it!"

At this point in the conversation Gregory let out a large, noisy sneeze scaring M.

"Next time," she told him angrily, "take that out to the barn!" Then she got the giggles as did Gregory and I.

B entered the conversation here with, "That was a very interesting conversation. Did you drive here tonight?" Lying, I told her that I had not, that I had walked over ... The Sabbath, you know! "Oh right," she said, "the problem is that my children are at the hotel and I need to get back there. I am not sure into which hotel they checked me."

I explained that she was checked in here already for after dinner. "But I do not know where they are right now." I explained that it didn't matter if she didn't know where they were as long as they knew where she was. This calmed her down and she said, "Well, right you are then."

"Fuck You," came the familiar shout from across the table.

W was in a good mood and ate all of her dinner, but without the usual, non-stop, repetitive  "I don't want it. Do you want it? I don't want it. I want to go to bed. Take me to my room."  Over and over and over again until both B and M would tell her to shut up!

Periodically W would get a mischievous smile on her face and wave at each person at the table. Some of us would acknowledge her wave others didn't notice it. H noticed it and replied by miming from across the table, with both hands, the fondling of her breasts. The next time she waved at him he used his fist to mime rhythmic intercourse.

A little while later, when I offered H a drink, he told me "Fuck You. You are dirty."

I told him "Spy Baba," which means "Be Good Father," in his language. His reply was "Fuck You!"

• • •

I realized that I have easily been able to enter their world and have detailed conversations at the dinner table. Most of Gregory's table mates (with the exception of "FUCK YOU!") have come to trust me, to ask for help with cutting a piece of meat or pouring more juice, or to ask for clarification or support when they are confused or frightened.

I wish I could transcribe even more of the conversations for you and you would see that while they make perfectly good sense, they make no sense! Often they are profound, or funny, or sad, or deep ... even when they make no sense!

Martha

Names have been changed to protect the innocent. Well, no, that is a lie. I have a hard time telling you about Martha but calling her someone else. The story is not told with malice, only love, and it is not really embarrassing when you consider Martha's dementia is far enough along that she needs special care.

So I say I've changed names so I don't get sued but the odds are minuscule and if I get any complaints, I'll call her Marilyn. See what  I mean, just doesn't feel the same as calling Martha, Martha.

Martha is one of Gregory's table mates in the dining room at The Lieberman Center. You may have read about her previously.

She is a short, cute (you know how old age can go ugly or cute, well Martha's went cute,) pixie cut white haired sprite. Besides the periodic grimace and shout out of arthritic pain in her shoulders, she is pleasant and usually in a good mood.

She talks non-stop. And when I say non-stop, I mean NON-STOP. For example, as her Aide was wheeling her away from the table today after lunch, Martha continued to talk as if the audience and venue was the same as it had been before leaving the table and dining room.

Some of the time her conversation makes complete sense and is "present time related" but most of the time it is Martha reliving events and people from her past as though they or she were still in her present.

She usually does this with mild exasperation and a "what can you do" attitude which makes me really wonder what her family and friends must have been like. Her attitude is endearing and her complaining engaging, not put offish.

Also, I cannot say that what she says always makes sense because most of the time it doesn't, but if you listen closely, it is hard to tell which part makes sense and which part does not. 

For example read here a repost of yesterday's conversation:
Martha: "May I call you Jack."
Me: "Yes you may."
Martha: "Is that your name?"
Me: "No."
Martha: "Then what is your name?"
Me: "Michael."
Martha: "Well I'll call you that then."

Today at lunch Martha, talking non-stop, was fussing with the little bit of left over food on her plate. She pushed it this way and that, back a little, pulled it forward a little while talking about wrapping it up and putting it in the car.

Then she stopped and asked no one in particular if putting the food in the car was a good idea? "They might come and steal the food. They might just do that. But then again they might come and still the car so I do not know what to do.

Made perfect sense in her wonderfully demented way of thinking. I'll try to remember more of what she talked about because she gets really creative. She makes me laugh a lot although sometimes I just want to say, "Martha, lets play the "Can you be quiet for two minutes?" game.

This Evening at Lieberman

M: "May I call you Jack."
Me: "Yes you may."
M: "Is that your name?"
Me: "No."
M: "Then what is your name?"
Me: "Michael."
M: "Well I'll call you that then."

Be: (at the dinner table) "I want to go to my room. Will you take me to my room?"
Me: "I can't take you to your room."
Be: "Why? I want to go to my room."
Me: "Because I am not allowed to."
Be: "Why? I want to go to my room."
Me: "Because the boss won't let me."
Be: "Who is the boss? I want to go to my room."
Me: "The man who makes the decisions."
Be: "I want to go to my room. Will You take me to my room?"

H: "Fuck you!"

Ba: Mimicking "I want to go to my room. I want to go to my room. I want to go to my room. WHY DON'T YOU TAKE ME TO MY ROOM SO I DON'T HAVE TO HEAR ABOUT YOU WANTING TO GO TO YOUR ROOM ANYMORE!"

Time To Review

Each night, when Gregory and I are tucked into bed and the lights are turned out, we hold hands.

I review the events of the day, beginning with "It was a good day." (Even if it wasn't.) I briefly name each significant event: for example: "We shopped for groceries. For dinner we had pizza. The Call The Midwives episode was wonderful."

Next I review the events for tomorrow, again very briefly. For example: "Tomorrow we have a slow morning, then we go to the opera at night."

To the day's event review, Gregory usually responds with: "Yes it was good." or "It was great." or just "Uhuhh."

To the tomorrow's event review, Gregory usually responds with something like: "Oh goodie." or "Nice!" or "Mmmm."

Over time I had to learn not to discuss the entire week, or anticipate out loud something that was happening in two or three days. Too much information was not only not remembered but it confused time even more than it was already confused. He would ask, for example: "Is the movie today?" When it was on the weekend. or "When will they visit?" When people were  going out to dinner with us mid-week. What he doesn't know doesn't hurt!

Works pretty well. Not sure how much he understands or remembers but it does give us something to talk about when we go to bed besides the always wonderful:

M: Good Night, I love you.
G: Me too!
M: Me three:-)

Short - To the Point - Subject to Interpretation

Gregory was sitting at his table, bent over, head in hands. "What is the matter?" I asked.

"I am OK. I guess I was just in the hole," he replied.

Reality Check

Hey, I woke up this morning. I can see. I can hear. I can smell. I can taste. I can touch. I can get up early and make coffee. Before JRC I can drive to McDonalds so we can have a fast breakfast of Egg McMuffins. I can drive to JRC, a Jewish Temple in Evanston to attend Sabbath services and to witness our friend Jan's first ever reading of the Torah as part of those services.

I can take a nap with both kitties joining me: one purring in my groin, the other draped across my neck and face. (P.S. The kitties are in favor again. Perhaps my niece Colleen's support helped me to look at them with new eyes.)

I can talk on the phone with a close friend John about life, love, Alz, God, religion, Judaism vs Catholicism, opera, kitties, art, creativity, and more.

I can look forward to some kind of dinner and then a movie on NETFLIX. I can look forward to a good night's sleep and to an empty day tomorrow, waiting to be filled - both the day and me.

So if my last few posts have given you impression that I am "in trouble," you were correct. But if you know me well enough, you also know that I recover pretty easily and pretty quickly. My psychic said, "You are resiliant!" She didn't know how right on she was ... or did she?

This was one of today's prayers at JRC. Fitting! A huge list of temple members who are ill was read.

Next, the Kaddish was said for a HUGE list of JRC members or family who have passed away.

Puts a proper perspective on life and the living, doesn't it? P.S. Sometimes "complete healing of body and soul" might mean not in this life as we know it. But none the less healing and peace.

Today

Today Gregory:

-Didn't know how to cut a chunk of Chicken with his fork.

-Didn't realize that there were buttons sewn to his shirt for fastening.

-Didn't know how to put on his gloves.

Tonight Gregory:
-and I went to a party,
-and he behaved like all was well in Bethlehem.
-Socially appropriate,
-mildly conversational,
-drank a glass of wine,
-ate some appetizers,
-complimented our host, and
- remembered how to put on his gloves.

Fireworks for Christmas

While driving home from dinner tonight, I broached the subject again of not decorating for Christmas this year. I wanted to see if he remembered that he was still in agreement with the idea.

Gregory said he agrees but added, "I thought there were going to be fireworks?"

"Fireworks are for your birthday on July 4th."

"My birthday."

"Yes."

"Please be sure to let me know when."

"I will."

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.

Flowers and Lucidity

Yesterday we went to Room and Board. As we walked through the parking lot we commented on the splash of spring flowers. I was able to name the "Daffodils" but couldn't remember the name of the other flower that looks almost the same but has more than one flower head per stem. I tried but couldn't come up with its name. All of my thinking was verbalized out loud, which I often do, for the benefit of carrying on a conversation for the both of us.

"Jonquils" snapped Gregory. Proud of himself.

Conversations

Sometimes I will have a conversation with Gregory after a trying exchange. I will explain why I reacted as I did and how I plan to try to react in the future. I explain my rational. Most likely he does not remember the conversation but I cannot say for sure that he doesn't. What I do know is that I cannot bring myself to change my behavior or approach to him without trying to explain it. Possibly it is my way of explaining to myself what I need to do to be a better caregiving partner and possibly my way of holding onto our relationship as a "couple" rather than being an individual making unilateral decisions. Gregory seems to appreciate my sharing my feelings with him.

This is how one such "conversation" went last night. While he was not remembering how to put on his night shirt, brush his teeth, or swallow his pills I held back and said or did nothing. I have found that if I try to anticipate his needs, guess his needs, or intervene too soon ... I only serve as a further distraction. Sometimes given enough time he will solve his own problem. Periodically I tell him that "I am holding back to give you space." He seems to appreciate that.

I have decided (for now) and told him that I do not think it is fair or respectful to him when I take over without being asked. I reviewed that we have talked about previously about my helping often being more of a distraction and hinderance than a help. I told him that if he needed help, he needed to ask for it and I would give it freely, gladly, and supportively.

But I just need to stop jumping in too soon (especially if it isn't a matter of safety.) This is a very difficult stance for me because it is very difficult for me to just watch or see him suffer and do nothing. He may or may not remember to ask for help but I will mention this every now and then as a possible reminder. Obviously I will also be monitoring his needs and make changes as needed. For example if he continues having trouble swallowing his medications and vitamins, I have found a liquid substitute. I just don't want to assume that it is needed now.

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.

Euphemistic But True

euphemism |ˈyoōfəˌmizəm|nouna mild or indirect word or expression substituted for one considered to be too harsh or blunt when referring to something unpleasant or embarrassing.
• • •
Was talking on the telephone with Jr today and he asked how Gregory was doing. I couldn't talk because G was within hearing range. So I just answered, "Right."
Jr continued "feeling out" how G was doing and wondered, "When Gregory seems to be having a period of difficulties, do they get better or stay at the low point?" 
My reply was, "Right."
I was thinking to myself that in the "ebb and flow" of Gregory's cognitive abilities (thank God - if there is one - his physical abilities have not suffered) it is usually "ebb."
Jr then commented that last time he visited, he noticed that, "Gregory wasn't as available as the visit before."
I said, "Right."
Well, without much actual discussion, MJr and I had a nice conversation and two points came out of it for me.
First, while euphemistic, "Not being as available" is a nice way of saying that Gregory's cognitive abilities continue to decline. He still has the cognitive abilities, he just cannot make them available when he need to use them.
Second, I wish that my conversations with Gregory could be as informative as the one I just had with Jr. I am thinking, "Right?"

Conversing With My Love

Like the broken glass of a window pane 

His thoughts are fractured.

‘This’ doesn’t follow ‘that’

And next is nowhere to be seen.

Like flocks of sparrows

Letters organize into words

But without meaning

Without understanding.

Like prisoners escaping into the streets

Sentences break free of logic.

They no longer reach their end

And sometimes start past their beginning.

Like runners passing in leaps and bounds

Time avoids smooth ticks or tocks.

We spend our days together as they come

And as they go or as they have or haven't been.