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.

Tuesday, March 31, 2015

Self, Selfishness, Selflessness

I continue to be amazed at how on target DAILY OM is for me. Based on Buddhist teachings, their lessons and inspirations talk to me. In the past I have used the term Selfish saying one must take care of oneself first in order to have the health and energy to be able to give to others. Perhaps I will change from Selfish to Selflessness to clarify from what most people call Selfish.


March 31, 2015
Self and Selflessness
Aries Daily HoroscopeBecause you likely know what it feels like to benefit from outside aid, you may feel driven today to devote all of your free time to the care of those in need. Yet while you will no doubt find many positive applications for your selfless support and generous levels of assistance, you may be surprised to notice that the impact of your gifts lessens throughout the day. If you feel tired, worn out, or hungry, you may not be able to dedicate as much of yourself to your chosen charitable pursuits. You can ensure that the help you offer touches many lives today by caring for yourself first before attempting to care for others.

It is our innate selflessness that drives us to help others, but the charitable impulses that prompt us to work to improve the lives of people in need cannot inspire us if we do not first take care of ourselves. In all selflessness, there must be something of the self as our power to act as a force for good is dependent upon our physical health and mental wellbeing. Taking care of oneself is an important element of selflessness, even though the notion seems as first to be counterintuitive. We are not selfish for setting aside some portion of our leisure time to see to our own needs. Rather, we are preparing ourselves to face the challenges that are inherent in most philanthropic endeavors. You will have all the energy you require to help others at your disposal today when you take excellent care of yourself.

Monday, March 30, 2015

The Ending and The Beginning

The last member of the Documentary Crew left this morning and while I am happy to have the condo to myself after a week of sharing it with four college kids (smiley face with tongue hanging out and eyes crossed) I miss them and their wonderful energy already!

The field work ended yesterday with a couple hours worth of interviews in the morning. Now their work has really just begun. They will review all their film footage, notes, interviews, stills, photographs, music, etc and attempt to put together a 10-15 minute documentary dealing with one of the 5 million stories out there about Alzheimer's Disease.

Since I was already raw emotionally at having re-visited many of the sorrowful and joyful memories of the last ten years for the team, I decided to watch "Alive Inside: A Story of Music and Memory." 

It is a very powerful documentary looking at the "hospital model" of caring for the aged and those with dementia and the use of music to help return Alzheimer's patients from isolation, loneliness, dependence, and sorrow back to some of their memories and joy.

Watching the movie reminded me that Gregory and my story is only one of so many stories which are even more difficult for those who do not have loved ones to care for them, to remind them of who they are and who they were, to support them.

I so enjoyed working with this wonderful crew: intelligent, thoughtful, sensitive, respectful, creative, and fun. The kids (I can call them that as a 70 year old man while their ages range between 18 and 22!) came into the project with a limited and possibly skewed understanding of what Alzheimer's and other dementias do to a person and to the people who love them.

I know they left with a more thorough, compassionate understanding and that this will be portrayed in their work. I look forward to seeing the completed documentary, will try to attend the screening at Chapman in May, and will organize screenings for Lieberman, CJE, and family and friends.

Here are a few candids of their work while in Evanston:

Gabe was the first to arrive

Documenting the neighborhood

At Navy Pier to visit Michael's Museum 

In the Art Studio with Katharine 

Visiting Gregory outside his room

Interviews in the condo 

Monica, Michael, Amanda, Gabe, and Riani

The "kids" making me a birthday batch of cookies

A standing joke about the documentary: 

Documenting me entering a blog post

Visiting with Gregory in his room 

Visiting with Gregory downstairs in the Great Room

The kids had a chance to enjoy Chicago

Sunday, March 29, 2015


Today for Lieberman's Sunday entertainment, a very talented young pianist performed a variety of music including classical, jazz, ragtime, Klesmer, and more. One piece he played was the "Hatikvah" or Israeli national anthem.

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As he was playing, many people in the audience began singling along in undertones and under their breath. It was a sound that while magical, was not joyous. 

It seemed to carry the archetypal, universal sorrow and ache which the Jewish people have carried around through the centuries, and still seem to have as part of their cultural conscientiousness,  beginning with the King of Egypt enslaving the Jews through Hitler and the Holocaust through today with Anti-Semitism still wreaking havoc.

"Hatikvah" "Hatikva" (הַתִּקְוָהpronounced [hatikˈva], English: "The Hope") is the  national anthem of Israel. Its lyrics are adapted from a poem by Naftali Herz Imber, a Jewish poet from Złoczów, (today, Zolochiv, Ukraine). Imber wrote the first version of the poem in 1877. The romantic anthem's theme reflects the Jew's 2000-year-old hope of returning to the Land of Israel, restoring it, and reclaiming it as a sovereign nation.



English translation
כֹּל עוֹד בַּלֵּבָב פְּנִימָהKol ‘od balevav penimahAs long as in the heart, within,
נֶפֶשׁ יְהוּדִי הוֹמִיָּהNefesh yehudi homiyah,Jewish soul still yearns,
וּלְפַאֲתֵי מִזְרָח, קָדִימָה,Ul(e)fa’atei mizrach kadimah,And onward, towards the ends of the east,
עַיִן לְצִיּוֹן צוֹפִיָּה,‘Ayin letziyon tzofiyah;an eye still gazes toward Zion;
עוֹד לֹא אָבְדָה תִּקְוָתֵנוּ,‘Od lo avdah tikvateinu,Our hope is not yet lost,
הַתִּקְוָה בַּת שְׁנוֹת אַלְפַּיִםHatikvah bat sh(e)not ’alpayim,The hope of two thousand years,
לִהְיוֹת עַם חָפְשִׁי בְּאַרְצֵנוּ,Lihyot ‘am chofshi b(e)’artzeinu,To be a free nation in our land,
אֶרֶץ צִיּוֹן וִירוּשָׁלַיִם.’Eretz-Tziyon viy(e)rushalayim.The land of Zion and Jerusalem.

Documentary Day 6 - Goodbyes

Goodbyes. After a week of following me and Gregory, we said our goodbyes to the documentary crew: Monica, Amanda, Riani, and Gabe.

Maybe Not A Saint

This was written by a dear friend and I wanted to share it with you. With the documentary crew asking probing questions during our interviews, I have had to revisit many emotions of the past. Many of which I have come to grips, others reopening new sorrows and joys. 

This note meant and still means very much to me. I do not do what I do for Gregory so I will be acknowledged or rewarded, but it does get lonely and kudos now and then do help. It was written right after Gregory went to live at the Lieberman Memory Care Facility.

Thanks PA. You know who you are!


Dear Michael,

It’s about time I tell you what I think of you. I’ve been talking about you with others, and it’s past time to say it to your face.

This is not about your sense of humor, your collections, or your creativity. It’s about your brave conduct as your partner of 35 years declined, from your soul mate to a manageable concern to a 24-hour caretaking job. This is about how your expectation of retirement companionship deteriorated to silent meals and bathroom supervision.

What I want to speak of is your unwavering love and devotion. Your resilience. Your composure, most of the time. Your acceptance, without hope. Your management of your own frustration and disappointment.

When Gregory became confused about dressing, you labeled, and later, laid out his clothes. When he couldn’t figure out how to plug in his shaver, you put arrows on the cord and the outlet. You engaged all your intelligence and creativity to help him. In private, you mourned each lost ability, a raw comparison to parents celebrating a child’s milestones.

When those accommodations failed one-by-one, (or sometimes faster,) you supervised. When supervision didn’t work, you did it. You demonstrated tremendous resilience as you devised ways to preserve whatever dignity and independence Gregory still had. You were, and are, his touchstone. You are the one he looks to for comfort, stability, and anchor.

You’ve always been open about your feelings, and never critical of my questions. Once I asked you, how long could you do this? Your response struck me and stuck with me. You said, I have the time. I don’t need to go anywhere and I can take Gregory with me if I need to run an errand. You were saying, why not care for Gregory at home indefinitely; I have the capability. I don’t think I could ever be that generous.

But one day, that wasn’t enough. One day, Gregory was not calm and compliant anymore, but agitated, unspeakably sad, and lashing out. Thanks to your preparedness, you did not panic. You found him a place to be where he is comfortable. He is calm and happy again. Nothing about you changed. Gregory changed.

         Through all of this, you also cared for your extended family and friends, by keeping us apprised, at least in broad strokes, of what to expect. You communicated your strong sense of what you need—support, acknowledgement, privacy, no need for suggestions. You never acted the martyr; just laid out the facts. You cried in your pillow at night.

I am honored that you include me in your circle, and I don’t know what I do to deserve it. I do know I need to reflect on how I can be more like you. I’ve told my children, a good friend should be someone who makes you want to be a better person.

I can only aspire to be in a relationship like the one you had with Gregory all those years. What I can do is to try to be more patient, more thoughtful, more devoted, as you have with Gregory. Because of your example, I am making an effort to make more time, take more time to think about how I can help them. Your influence improves the world.

You may not be a saint—but you may be a minor angel.


Saturday, March 28, 2015

Documentary Day 6

Day 6 has been interesting. In some ways I am already feeling the "star struck" reaction to being in a film. I continue to be grateful to the crew but am feeling impatient while they set up, focus, and chat among themselves. Waiting is a large part of the process and at times that is difficult. A lot of film making is boring and tiring.

My voice, while over my cold, comes and goes so during the middle of reading a poem it will give out and I'll have to begin over. I must have read two dozen or so poems. Having to do sound checks, clapping before each set to as to synchronize the cameras (two are being used.)

Five people living in the condo (four of whom are "college kids") when I am used to only one, and that one being me. Meals to be organized and cleaned up. Groceries to be put away after a shopping trip. Two bathrooms which are plenty enough for me when here alone but in demand when needed by 5 people. For the most part, however, they are good roommates and restful of the space.

At night the crew has been going down to the community room to watch the "dailys" (work shot during that day.) The purpose of this is to see what went right and what needs further attention or to be redone. Glad for the community room as the kids really get into their work, laugh a lot, are nosey and are, well ..., are college kids and I, I am a seventy year old man used to having things my way and more or less living on my own.

When I got home from my birthday dinner last night with Pat, they had baked me a batch of birthday cookies, including one looking like Gigi and one like Emma. They also made a Vegan brownie which actually tastes worth eating! I was tickled by their gesture!

And Gregory is feeling better today with his cold and cough.

Friday, March 27, 2015

Documentary Day 5

Below is a photo of some of the documentary crew at work in the Lieberman Art Studio. Gregory has a bad cold and cough but we tried "Painting" anyway. Then after lunch, Gregory took a well deserved nap.