Clock With No Hands

Taken from M Train, by Patti Smith,  P. 83. 2015.

"I closed my notebook and sat in there café thinking about real time. Is it time uninterrupted? Only the present comprehended? Are our thoughts nothing but passing trains, no stops, devoid of dimensions, whizzing by massive posters with repeating images?  Catching a fragment from a window seat, yet another fragment from the next identical frame? If I write in the present yet digress, is that still real time? Real time, I reasoned, cannot be divided into sections like numbers on the face of a clock. If I write about the past as I simultaneously dwell in the present, am I still in real time? Perhaps there is no past or future, only the perpetual present that contains this trinity of memory. I looked out into the street and noticed the light changing. Perhaps the sun had slipped behind a cloud. Perhaps time had slipped away.

Four Years Ago

If you are a fan of Facebook, you will know that they periodically show you a photo you posted in the past. This was taken four years ago at the Shakespeare Theater on Navy Pier. See the Ferris Wheel in the reflection. Both the wheel and Gregory have moved on to other places.

Past, Present, Future

You've heard that old saw, "There is only now. The past is gone. The future is not yet here. All you really have is today!" I do not mean to diminish the message as I do believe that being in the here and now is very important and all we really have, but ...

During the last two years of Gregory's life, we both really learned more about being in the now. His greatly diminished world at Lieberman was all he had and I believe that he really enjoyed not having to make decisions, the lack of stress, no pressure to perform, and no need to remember. In many ways he had always taken things as they came, didn't worry too much, and had confidence in himself that he would find the way when things got off target or lost but now his life was greatly simplified.

I learned not to spend too much time in the past and to really enjoy our time together at Lieberman as it unfolded. Again, how we spent our time together was diminished but for the most part, when I was able to accept the now, I was able to be in the moment without needing to regret the past or plan for the future.

Now that Gregory is no longer with me, at least physically, all I have of our love and relationship is the past and my memories of the past. Many of these memories are thankfully triggered by photographs. In fact as I have continued to clean out, rearrange, freshen and "re-claim" the condo for myself, I have been coming across more photographs of our time together.

The photographs represent vacations, family events, celebrations, holidays, and sometimes just posing in love. I have scanned some of these early, 36mm photos and am posting them here.

Of course I have  a now and I will have a future. I am not putting too much pressure on myself to discover there future right now but rather to just let it unfold as it chooses. My future is based on all who I have been and all that I currently am and I hope that as I arrive at who I will be, that it is (as Gregory and I are found of saying)"More Than Ever."

2635 Poplar, Evanston

 On brother Mark's boat

 In Roscoe, Chicago apartment

 At Mark & Diane's home in Goldwater, MI

Christmas with Mark & Diane and family in Goldwater, MI

In apartment on Roscoe Avenue in Chicago

2643 Poplar in Evanston

We built a Jewish holiday "Sukkoth" at 2643 Poplar in Evanston

2635 Poplar, Evasnton

Vacation in Jamaica

2643 Poplar, Evanston

Goldwater, Mi at Mark & Diane's 

Chicago Botanic Garden

God Bless The Bookmark

Today's DailyOm Horoscope:

There are certain events that have such an impact on our lives that we may begin to build our identities around them. Though it may give us a sense of purpose or the feeling that we are somehow special, it also keeps us tied to that event energetically. This means that the energy available to us for facing life today is diminished and also filtered through the experience of our past. But when we can look at these experiences, learn from them, and release them, we can take the energy that was invested in their care and keeping and channel it into the present moment. If we look at life right now without thinking of it in terms of the past or the future, we can find much to be thankful for. By gaining insight into your interior life today, you have more energy to enjoy the present.

Yes, I have built my new identity around Gregory for the last 20 months as his secondary caregiver, health care advocate, grocery and treat supplier, and his almost daily visitor. I am happy to spend OUR money on blessing him with Manny to care for his needs and for having piece of mind knowing Gregory is in good hands without my having to be by his side 24/7/365.

I still think of the condo as ours, and the car as ours, and my money and investments as ours. I still bake a fruit pie now and then, or bring Gregory fresh fruit when in season, or get excited when I find a new form of dark chocolate for him. I still shop for his clothes and drug store needs. I continue to decorate and fine tune his room and make sure there are always fresh flowers on his desk.

I continue to be involved in the Lieberman Center as observer, supporter, and contributor to the milieu that provides for so many like Gregory. On a daily basis my interactions with the residents and staff bring me joy. On a larger basis, I continue to think creatively about how Lieberman can provide better services to everyone who walks through the revolving door at 9700 Gross Pointe Road.

Also, there is time for my writing, my collecting, my family and friends, living in beautiful downtown Evanston, a little travel, enjoying the condo, enjoying my girls (cats Emma and Gigi,) shopping, and working on my creative projects to which there is no end.

So my life right now is Ying and Yang, Black and White, Push and Pull, Opposites and Sames. I am tied to the past and in some ways feel my current life is diminished, on hold, at a standstill. I wonder "Who am I?" and "What do I want?" I am seventy years old and how will I spend the rest of my life? 

On the other hand what price love? Gregory is still such an important part of my life even in his diminished state. I am committed to being here for him and to helping his life be as good as it possibly can be given the situation.

On the third hand, somehow I am still able to be myself and pursue my own interests, directions, ideas, projects.

So if I look at life right now without thinking of it in terms of the past or the future, I can find much to be thankful for. By gaining insight into my interior life today, I have more energy to enjoy the present. So my energies are not wasted, they are just going to be different for a while. Once Gregory has "gone home" I can begin the next chapter but meanwhile, God Bless the Book Mark!

Thanksgiving Thanks With Purpose

I am aware today that being Thanksgiving has been OK for me. I am completely in the present and not thinking about Gregory and my past Thanksgivings and not thinking about our future ones. (Having typed this is kind of like thinking but not really:-)

I am aware of feeling joyful and happy. I am looking forward to celebrating the holiday. The reason I think is that I have filled today with purpose. I straightened up the condo and emptied the dish washer. I ran a load of laundry. I communicated some on my computer.

I made "Thank You" sign tents to post around Lieberman. This time around no mass distribution of food or candy like other holidays but rather a verbal thank you: Front Desk - Administrative Offices  PT/OT - Volunteer Office - Art Therapy - Life Enrichment - Kitchen - Laundry - 5 Floor Nurses Station - Second Floor Building Lounge - Head Nurse: Alicia - Social Worker: Hannah - Activity Director: Alma - G’s RCA: Tomika, Hazel, Luberta - Dining Room: Dorina - Restorative Nurse: Julie - Dietician: Stephanie - Private Care: Manny and Private Care: Connie.

I gave Manny half of today off and I will be with Gregory for Thanksgiving Dinner at Lieberman. For $7.00 I can join in on the whole roasted turkey, dressing, sweet potatoes, cranberry sauce, pumpkin pie. So Gregory and I will be having Thanksgiving Dinner together. I am also looking forward to spending a longer period of time with him instead of the one to three usual hours a day.

I gave Manny off tomorrow so my friend Pat will help Gregory with lunch and I will be with him for dinner again tomorrow.

I did make some "treats" for the immediate helpers on the fifth floor. I baked two 9x13 pans of pecan brownies, cut into a total of 48 pieces.

So in all, I am celebrating Thanksgiving in a new way, in a "here and now" way, in a joyful, wonderful way. I am happy.

Surrender

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.

A July 4th Happy Birthday

Celebrating Gregory's birthday at the Lieberman Center with care giver Manny and companion/friend Alaksh. Gregory turned 66 today and it was with mixed emotions that we partied. In the first photo Gregory is not unhappy, just unfocused. In the third photo you will see his smiling face.

I think he knew it was his birthday and when I sang the birthday song to him on arrival he cried and I cried and we hugged. Later when we lit the candle and all sang, he sang along. After a little coaching and demonstrating, he blew out the candle. (P.S. He also blew out the candle on my cake last March.)

Really bittersweet. Devistating if I think of the past. Wonderful, grateful, and blessed when I think only of the here and now! 

A Testamony

This post is a testimony to NOT worrying about the future. I know that one has to experience on their own to learn lessons, telling doesn't help all that much, but maybe a few words might help you.

As Gregory's Alzheimer's progressed I spent a lot of energy not worrying about the future, trying to not worry about the future, trying to not worry about not being able to not worry about the future, and of course ... worrying about the future.

I did a pretty good job of not worrying and living in the here and now but boy, in looking back, it was really worthless and a waste of energy worrying about the future because now that the future is the present, it isn't at all like I imagined it would be and in some ways not as bad!

First of all living in one's imagination is always worse than living in reality, no matter how bad reality may be. The imagination fires the unknown, the extremes, and at times the creative vs the real pain and suffering that might be (might have been or is.)

Gregory declined so rapidly during the month of December and January that the future was on us before I knew it. His anger and violence - here. His incontinence - here. His not sleeping at night - here. His not knowing who I am - here. His not being able to eat by himself - here. His not being able to dress or undress himself - here.

Almost overnight all the difficult signs of Alzheimer's that I had been trying not to worry about were here - worrying or not. The small amount of worrying that I did, didn't help, the future was here anyway. Prepare for the future? Yes. Ask questions about the future? Yes. Learn about what the future might bring? Yes, as long as it doesn't depress you too much. But worry - WASTE OF ENERGY.

It will get a lot worse too, but I am not worrying about that because Gregory is being well taken care of at The Lieberman Center. Will it be difficult for me to watch him get worse and worse? Of course. Will I cry when I think of how much I miss what he used to be and what we used to be together? Of course. But worry? No more.

Because I was able to take care of myself, be alert, educate myself, avoid too much worry, avoid too much depression, etc I have been able, proactively, to provide a situation for Gregory in which he will receive the best possible care for the rest of his life.

It feels good to have no worries. For sure I know they will not help. But I can continue to love this man and provide for him as needed, and visit almost every day as long as it makes a difference to him (and to me.)

When I got the call that he had fallen on his knees on the first night at Lieberman I didn't worry. When I got the call that he had fallen out of bed, cut a two inch gash in his head and given himself a shiner, and was on his way to the emergency room; I didn't worry. A week later, when I got the call that he was again on his way to ER, this time having suffered a Grand Mal Seizure, I didn't worry.

I regrouped, got dressed and met him at the ER, held his hand and cooed "I know" over and over. Loved him even more. Felt bad that he was hurting. Wished that I could make it all go away ... but guess what ... I was OK and I didn't worry about the moment (he was being well taken care of,) I didn't worry about the future (I accept that it will continue to get worse,) and I didnt' worry about how I would take care of him (I now had a team of dozens and dozens of people helping me make the best possible decisions for Gregory.)

I only had to be strong for him and myself, make sure that the hospital staff clearly understood that Gregory and I are not afraid of death, had discussed that, and wanted NO heroics, NO chest pounding, etc. I always ended by making sure they knew, "If he is dying, hold his hand ... NOTHING MORE."

In the end, what is there to worry about? When you have seen death approach and leave with your parents, with your friends, as it slowly but surely takes away the person you most love in the world, and when you accept that eventually death will come to get you ... fear looses its edge. Nothing to worry about. Be happy!

Symmetry—A Palindromic Film

Symmetry—A Palindromic Film

This post is based on a post by my friend Jan.
To visit Jan's post Click Here: Opens in a new window. 

Why is the past different from the future.
Because the laws of physics are time specific.
If clocks were to go backward instead of forward...

Palindrome.
palindrome |ˈpalinˌdrōm| nouna word, phrase, or sequence that readsthe same backward as forward, e.g., madamor nurses run.

Not nice to remind a person.
I think, at least today
I think,

I would like to have time reverse
Reverse for me.
For us.

Tears. Unexpected. But not your fault.
Unexpectedly, tears hide and hide and seek.
Gregory's Grandfather on his mother's side: Otto.

To Breathe, To See, To Live

The Gregory we know and love only exists in our memories now. He is still handsome although seems older. He is still playful although on a simpler level. He responds and replies but at a lower level.

His world is safe and comfortable although on a very narrow scale. His routine is established but only with guidance and at a less active pace. He is full of love, patience, and compassion as he tries to help other residents around him.

He is still full of the wonder of life although the amazement is often at the common. His memories and experiences may still be there but they are not available to him.

He loves to walk and explore but now only around the secure unit. He is creative and artistic but now with crayons and paper. He still loves to eat although mostly with his fingers, being grateful for what ever is on his plate.

He lives in the moment and by watching him do so, I have learned to do so as well. We hold hands, we stroll the halls together, I sit with him at meals, we watch re-runs of old TV shows, we read aloud, we have a snack or some chocolate, we just sit together, we lie together head on shoulder in his narrow bed.

Yet more gifts Gregory has given me lately is knowing how to live in the moment, knowing how much is enough, having unqualified compassion for others, the true value of not only forgiveness for others but mostly forgiveness of self, finally allowing patience to come easily and without fear of the future.

I love this man so much. I am grateful that he has taught me how to love him in the moment because if I try to remember the good times, the past times, or to grieve the future times ... at least for the time being ... I do not think I will be able to breath for the sobs, to see for the tears,  to live for the loss.

The Three Times

This piece is useful to remind me that I can forgive myself because my poor behavior, decision, action etc is already dead. Move on. Live a better life here and now.

It is essential to see that we live our lives most of the time in the three times; that's to say, the past, the present, and the future. Why do I suffer now? It's because of something in the past. What about what should I do in the future. Well, I should plan to do something in the future. The odd fact is that the past actually is dead. There are memories of it, but everything in the past is actually gone, and every thing in the future has not yet arisen. There's only one place where you can actually be,  and that is now. This needs thinking about, because it's very easy to say that's a lot of nonsense - of course there's past, present, and future. But actually, the only place where there is something, is-ness, is only now. How could be there be anything else? Anything else is was-ness or will-be-ness. Is-ness is only now. And you, therefore, can only be now. You cannot be in the past. That's dead. You cannot be in the future. It hasn't come. You can only be now.

From Tricyle, The Buddhist Review. Spring 2013. P 14.
"The Three Times"

By: John Crook

Have a Good Day

In some ways this is true for the person with Alzheimer's and for the one who loves that person. By letting go of the past you can live in the now and try not to worry about the future. Today is all we really have. Maybe the comment from the store clerk has a greater meaning than we know, "Have a good day."

Where Did the ESCAPE Button Go?

Interesting! In thinking about it, I realize that there was a time when I had a number of "alternatives" that I could engage in that would let me escape my world for a while. Now it seems to accompany me where ever I go and what ever I do. Why am I not able to escape for even a few minutes. Where are the alternatives? Where are the distractions? Need to think about this some more.

Remembering the Past, Enjoying the Present, Avoiding the Future

The Past. The Present. The Future. The future, the future, the future. Avoid it! Read about it. Educate yourself about it. Prepare for it. Do not deny it. Know it will come. But then, at all costs, avoid thinking about it!

Each person affected by Alzheimer's Disease performs their role predictably. The predictability is that each person will express their role in an individual, unique way. While general descriptors of the disease can be established, and while most often expected experiences can be discussed, each case is still a unique, creative experience.

While at the book store, I skim a book to see if it is one I want to own. I buy it. Then it sits on the shelf and gather's dust. Finally I am ready to learn more about the disease and I pick up the book and begin reading. I read and I learn. I read and I cry. I read and I fear for the future. And I put the book back on the shelf. And I again work at living in the present.

I have never completed any of the numerous books on Alzheimer's Disease that I own. It gets too depressing when you are looking at other people's situations and it is all too easy to begin to obsess about you and your partner's future with the disease. Which may or may not realize itself in any predicable way based on what you have read.

The reading has been useful, has taught me a lot, and to a certain degree has helped me understand the "present" of the disease and prepare for the future. More often I have come to my own conclusions about dealing with the day to day of the disease without the help of any of the books sitting on my shelf. The books have confirmed what I already knew, had already experienced, or had learned by doing of it.

The inherent problem with books on Alzheimer's Disease is that they talk about someone else's present, how their present became their future, and what to expect as the disease progresses. I get too overwhelmed and too depressed and my "present" begins to suffer. So I put the book down and while better armed for the future, I avoid thinking about it. I reaffirm that all one really has is the present. And I go on.