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.

Holiday Grief and Balance

As I have been told, there will be many firsts in life. Usually firsts are to be celebrated. I am looking for a way to celebrate my first Christmas in 40 years without Gregory. Not pushing myself to think about how I'll spend the actual holiday. Maybe I'll spend it at Lieberman, Gregory's last home, spreading joy to the residents?

I have decorated the condo for the holiday but minimally when compared to previous years. I have not baked any cookies but my taste buds are trying to convince me to make at least a few. Haven't purchased many gifts for people but will make my Ina Garten's Rosemary Cashews as gifts for family and friends.

Rang in the season at Roger's annual Christmas party on December 5th. Enjoyed the Christkindlmarket in downtown Chicago which my niece Colleen Maire.We bought German glass ornaments, ate potato pancakes with sour cream and apple sauce, and munched a Bratwurst. Bought myself a new computer and have been enjoying using it in and organizing my new office, the table in the living room which used to be Gregory's workspace. Looking forward to finishing the reading corner in the bedroom, replacing the computer desk that used to be in there, with a comfy chair, lamp, and additional bookcase

Will probably spend dinner with various friends over the next weeks and look forward to that. Bought but haven't wrapped new mice for Emma and Gigi. Feeling the joy of Christmas on one shoulder and Gregory's absence on the other. But somehow that creates a balance.

I will continue to grieve for a while yet ... but slowly, very slowly I am being able to think about past memories, both happy and sad, with both joy and sorrow, while carving the path of my future. 

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

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!

An E-Mail to Friends

Dear Susan and David,

Hi. This time of year is usually when PV beckoned. 

Now it's the Lieberman Center at $9,900/month. But after six months we will switch to Medicaid and $60,000 is a small investment for Gregory to be taken care of for the rest of his life! I go to visit almost every day for an hour or two. I have been fixing up his private room so it is a refuge for me, for visitors, and perhaps for him. I know he thinks it looks nice. 

A small freezer/refrigerator combo in black, a black chest of drawers for "kitchen" storage, a small flat screen TV (large ones in pubic spaces,) two nice sturdy chairs, one matching ottoman; a desk running under the window with a plant, framed photos, a coffee table picture book on a tilted stand, a cup with a few pencils and his reading glasses (not sure he knows to use them;) a bed side table (with locking top drawer for me to keep things private,) a dresser, an armoire, a large closet, paintings that Gregory has done on the walls. The bathroom is tucked in as well but a shared shower (since supervisions is needed) is down the hall. 

Yes, I am on an emotional roller coaster. When attending to business I am OK but during the still hours of the night I miss him with my tears. Sometimes visiting him at the Center is OK, other time very difficult. I have compared it to being in a "Fellini  Movie" without any back ground music! I have found that many people do not know Fellini so I have attached a clip. 

The most difficult part is that in daily life it is as though he is dead; the condo is quiet, everything is mine, he will never be here again to share the love we created it with, I sleep alone instead of drifting off together while holding hands. I didn't expect to grow old by myself and that makes me sad as well. I try not to think of what "old age" will be like for me or for Gregory for that matter. Not pretty and certainly no future in it!

On the other hand in my new role as Secondary Care Giver, my life is a lot less stressful, the work load is reduced, and at times "out of sight out of mind." I can get dressed for one, not two. I can clean up after one, not two. etc. I can travel again and continue to enjoy theater, opera, etc. I'll have more time to write and to be creative. Maybe I can be a supernumerary at the Opera again, I have missed that a lot. Who knows what lies ahead but it does feel like there are many doors waiting to be opened.

His family has always been, and continues to be supportive of everything I do and all of my decisions. They go out of their way to let me know they are here for me and to feel loved. I love them dearly as well.

In many ways, this whole experience  of Gregory's being at a memory care center is surreal much, as I said, like a Fellini movie. The stages of Alzheimer's while Gregory was at home were gradual and in a familiar environment. I worked diligently to keep him safe, happy, content, occupied and that worked well up until the last couple of months. We still ate out and attended theater etc but it got more and more difficult.

In the end, I lost my patience with Gregory less and less as it became more and more obvious that he did not have the abilities/skills any longer. His behavior no longer looked bad or selfish or thoughtless (even thought I knew it never was meant ... it looked like it was and was able to trigger old responses. These were quickly stopped with apologies quickly in hand.)

All along, I have continued to develop myself as a person with a life and interests but most of my thoughts and time were with Gregory. Now I have a lot of time on my hands and a life to redefine. I am grateful for so many things and my heart is happy that Gregory is being well taken care of. All for now, as always,

Fondly,

Michael

P.S. This e-mail was written for you two but I will turn it into a BLOG.

Hope For The Future

Just watched a TED Talk that deals with neurological ways of helping patients with brain diseases. Amazing. Just a few tears shed for the potential, not just with Alzheimer's but for many.

CLICK HERE:
TED TALKS: Andres Lozano: Parkinson's, depression, motor functions, Alzheimer's and the switch that might turn them off

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."

Otherwise

This was posted on my friend Jan's blog and it resonated. Thanks Jan. Thanks Jane. Otherwise by Jane Kenyon by jyourist I got out of bed on two strong legs. It might have been otherwise. I ate cereal, sweet milk, ripe, flawless peach. It might have been otherwise. I took the dog uphill to the birch wood. All morning I did the work I love. At noon I lay down with my mate. It might have been otherwise. We ate dinner together at a table with silver candlesticks. It might have been otherwise. I slept in a bed in a room with paintings on the walls, and planned another day just like this day. But one day, I know, it will be otherwise. Jane Kenyon from Otherwise: New and Selected Poems  (Graywolf Press, 1996)

Both Cases: A Poem

"I will miss you." he said.

"Why?" I asked.

"Because I am leaving." he replied.

True in both cases.

He was going for a walk.

He is becoming less with me.

Yom Kippur

Break the fast: gefilte fish, chicken soup w/ matzo ball, brisket w/gravy, kishka, peas, Mogen Davis concord grape wine, kugle for dessert.

Our prayer for the new year, "It only shouldn't get too much worse."

May you be sealed in the Book of LIfe for Love, Health, and Joy.

The Story of Forgetting

This passage was taken from The Story of Forgetting: A Novel by Stefan Merrill Block.  It is a wonderfully written, sensitive, joyful yet heavy story about: 1) A teenager whose mother has early onset Alzheimer's, 2) An old man who wishes he could forget, and 3) A land called Isidora where memories do not exist for anyone.

Hopefully this blog will be the most difficult one you will see here, but it makes one really realize that to live to today is a must, to be grateful for what one has is a must, to be compassionate and supportive is a must, to love fully is a must … for who knows when tomorrow will arrive.

Page 182

… when the disease commenced its final, irrevocable, backward march, death finally coming for all that life first brings:

The death of speaking.
The death of walking.
The death of control over the bowels.
The death of standing upright.
The death of self-feeding.
The death of crawling.
The death of sitting up.
The death of sleeping at night.
The death of swallowing.

When the final death came, that of the beating of her heart, so much of her had died so long before that this death was no more than another, was simply the last.

But at the end, modest solace: after countless deaths, after a full reversal of a life, what was left of Mama finally came to rest in the fragile circle of an unborn baby, her emaciated knees drawn snugly to the chest. The only word for her then was not dead but returned.

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.