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.

Friday, October 31, 2014

Halloween III

Today Gregory is wearing orange for Halloween. Thanks Manny!

Yesterday, I asked Rabbi Pincus of Lieberman Center, if are there any Jewish holidays that would justify it being OK for a Jew to celebrate Halloween.

He quickly compared Halloween to Purim saying they both include candy, food, costumes, masks, etc.

He added that if it makes someone happy to celebrate Halloween, depending on their perspective (i.e. fun not evil) why not!

Gregory and Peaceful in the Great Room on the first floor.

My costume: Black T, black shirt, black pants, black shoes.
Candy corn colored bracelets and a Candy Corn pin.

Thursday, October 30, 2014

Halloween II

Gregory and I celebrated Halloween a day early today at Lieberman. Every holiday (Easter / Spring, Halloween / Autumn, Hanukkah / Christmas / Winter and once or twice during the summer) we give EVERYONE a treat as a thank you for all they do for Gregory. The THANKS are much appreciated. For Halloween I purchased eight buckets of 100 piece, individually wrapped red licorice and put the above label on three sides of the bucket. 

At each destination, I gave Gregory the bucket and "we" presented it to the department. Gregory got a lot of attention and thanks and love from everyone! The departments which received a bucket of licorice treats included: Front Desk, Personnel Offices, Staff Break Room, Laundry, Kitchen, Physical Therapy, Life Enrichment, and Fifth Floor Nurses Station. At the Nurses Station we added a two pound box of Frango Mint Chocolates.

You would be amazed, or maybe not, at how important it is to our helpers to get a little thanks, a little piece of candy, and a lot of love.


Photo taken by Manny, Gregory’s companion at Lieberman. Included are the rainbow of bracelets I brought Gregory as a Trick or Treat. He loves bracelets and now they will not break and spread beads all over the place!

Tuesday, October 28, 2014

Thank You Corine


Have been thinking about you a lot recently and wanted to let you know that I appreciate you and to thank you for being my first guru/teacher (and counting:-) Let me ramble for a little ...

I continue my readings, meditation, and practice in Buddhism and find that they continue to help me live my life each day, accept changes as they come, grow into my new relationship with Gregory, and continue to grow myself.

Do you remember that you (indirectly) were part of an “epiphany” that I experienced late in 2012 or early 2013 (I don’t remember exactly) as I was drifting off to sleep: 1) I needed to quit Chicago Children’s Museum as curator to Michael’s Museum, 2) I needed to begin meditation as a way of finding a way to get away from myself and my suffering with G’s Alzheimer’s, and 3) I needed to reclaim my health and my body.

I have succeeded with number 1, have progressed well with number 2, and continue to struggle with number 3 (although I did renew my membership at LA Fitness and have been going to workout at least twice a week.)

Our meeting in the hall at Heartwood when I had finished a massage with Sarah McLaughlin and my subsequent signing up for a Yoga Nidra class was no coincidence. It was a gift from the Universe. The experience with you and Yoga Nidra changed my life and again I will tell you that I am so grateful to you. Our sessions in your office and the sessions on Davis Street helped me continue on the path.

While I know that I had and have been doing a good job supporting Gregory and living with the challenge of Alzheimer’s, I really would not be as successful as I have been without you and your being my teacher.

I call my life with Gregory for the last ten years our “journey” and my growth with meditation my “path.” So thank you for showing me the path. I continue to be comforted and amazed as it continues to unfold before me.

So thank you, I appreciate you, I am grateful to you, I love you, and Namaste!


Sunday, October 26, 2014

Ruby: A Portrait

Ruby is a black woman who lives on the assisted living floor at Lieberman. She is in her early 90s, uses a walker to help her get around, and is totally blind.

Often, she can be sitting (and sometimes dozing) on a chair near the receptionist by the front door in the main lobby. I always greet her and she has come to recognize my voice. She always seems to be in a happy, friendly mood.

She is always dressed nicely if not tastefully in black with an attractive colorful blouse and has a neatly quaffed hairdo. She is not what I would call pretty but is pleasant enough to look at. You can tell she is blind because her eyes are rheumy and unfocused.

The thing that stands out most about Ruby is her love of good music. When attending a Sunday Entertainment in the Community Room, she can be seen clapping along to the music and if the music warrants it, standing between her walker and her chair "pulling a few steps."

I am told she used to be a dancer and from her involvement with the entertainment I do not doubt it. While many of the residents can barely muster enough energy to clap along, Ruby is clapping vigorously and keeps time to the music. She will add her own rhythm to the clapping and you can tell she knows what she is doing. Periodically she will shout out, "Yea!" or "Amen!" or "Go!"

When she is "stand dancing," she really feels the music in her bones and body and translates that to you if you happen to be glancing her way. She sways, bobs, side and back steps with a bounce, and periodically, when appropriate, shimmies her shoulders and breasts to punctuate the musical phrase.

At the risk of being disrespectful of Ruby's old age, I would say that watching her "move" has a bit of her old sexiness still about it! Ruby is a pleasure to know is all I can say to end this description of my experience with her.

Julia's Feedback

Today's entertainment included a singer of Jazz with his guitar. The music consisted of "oldies," was laid back, and enjoyable.

After a show, Manny and Gregory and I usually hang back while the rest of the wheel chair residents line up for the elevators. As we were finishing off our apple cider and cookies, a well dressed 80+ years old woman in her wheel chair came "foot pushing" in our direction.

She stopped and said, "I just wanted to let you know that I really enjoyed the article. I read it over at least ten times. His working for the Bahai is wonderful and I would love to see some of his art work.

I told her that there was going to be a show of Gregory's art work in the lobby soon and she said she would keep an eye out for it. She told me that she shared the article with her son and her grandson. The grandson is a painter too, she informed me.

She graciously thanked me again, I told her how much it meant to Gregory and I that she stopped to comment, and then she peddled off towards the elevator.

Saturday, October 25, 2014

Going to the Movies

Last February I was about to cancel Gregory's cell phone since he would not be needing it anymore. I found out that Manny, his private day care person, was using a "pay-as-you-go" cell phone and it was costing him a lot more than I was paying for Gregory to be part of my family plan. So I gave Manny the phone as a perk to his working for us.

With the advent of the iPhone 6 and 6+, the cost of the iPhone 5 plummeted to 99¢ so I bought one for Manny. He is tech savvy so I knew he could make good use of a "smart phone." As an additional perk I still pay for the service and the data but it is WELL worth it because Manny is so good to and for Gregory.

Here is a photo that Manny sent showing the first re-blooming of the Cyclamen Gregory has in his room.

And here are two movies (similar to each other) that Manny sent to me via text. You will see a bit of Gregory's "French Man" routine.


Wednesday, October 22, 2014

A Nice Gesture

A very nice gesture from The Lieberman Center.

During the summer, they offered free of charge, a dish of ice cream. It was served in "The Nosh," which used to be a small snack shop just off the library and main living room.

Now that it is fall and winter, they offer between the hours of 1:00-3:00 a cup of hot chocolate and a cookie. Also free of charge.

Being a Jewish organization, no work on the Sabbath (or Shabbas as some know it) so the Nosh hours are Sunday through Thursday with no hours on Friday and Saturday.

This creates a nice destination point for residents to go to, away from their rooms and floor, for refreshments and to visit with their visitors.

Tuesday, October 21, 2014

Sometimes Even One Acknowledgement

This note was sent to me by Gregory's niece Renee, as written and given to her by Gregory's brother Mark.

It is even more meaningful to me considering Senior, as he is known, has had his own bundle of difficulties for two or three years now including the inability to talk due to a Tracheotomy after a major heart attack. 

His wife Diane has done a wonderful job in supporting and honoring him, so I give back the sentiment! I love you Maire family! 

You have never doubted me, my love for Gregory, or our relationship for over 40 years which began in an era that did not understand or respect "Gay." I value that!

In many ways you have been more family to me than family (not wanting to diminish my own family, whom I love dearly.)

Role Playing

To follow up on a previous post or two dealing with Gregory's new found interest in role playing, here is a list of current routines. I believe that he uses them as a form of interaction, definitely not communication as there is no sense in what he says.

Developmentally Disabled
Baby Talk

To really picture what I am talking about, you need to experience him as he plays. Once he gets going, sometimes there is no stopping him until I pop a cookie into his mouth.

I get great joy out of the interactions and both Gregory and I usually dissolve into the giggles and at times get so tickled that we cannot stop laughing.

Monday, October 20, 2014


You saw these photos from the last Lieberman Sunday post. But I wanted to look at them again. Emotions are good. They show we are alive. They are barometers to how we are feeling. Sit with the emotions a while, embrace them, accept them, then move on.  It makes me feel good that Gregory can still express his emotions, sometimes more freely then one would expect and they move on as freely and as quickly as they arrived.'






Sunday, October 19, 2014

Lieberman Sunday Continued

You have heard and seen the lyrics to "Always" by George Gershwin in several of my blogs. In some ways it has become my theme song for Gregory my relationship and love for each other . Today, at the October Birthday Celebration, our entertainer (the 85 year old man) had the lyrics to "Always" on the screen and everyone sang along. What you are hearing are the combined voices of some 40 people whose enthusiasm outpaces their energy.

Click this link which will open in a new window.
Then click the red arrow in the upper left hand corner.

Lieberman Sunday

21 photos from October Birthday Celebration Sunday. Gregory enjoyed the music and at times was moved to tears. The guy who performed is 85 years old. He played electronic piano, told stories of his entertaining days in The Catskills, conducted sing alongs from "The American Songbook" including Gershwin and others. Of course the birthday cake was delicious and Peaceful joined us.

Friday, October 17, 2014

At Peace With Suffering

STAY PRESENT, WITHOUT SECURITY"Instead of asking ourselves, “How can I find security and happiness?” we could ask ourselves, “Can I touch the center of my pain? Can I sit with suffering, both yours and mine, without trying to make it go away? Can I stay present to the ache of loss or disgrace—disappointment in all its many forms—and let it open me?” This is the trick."

Thank you to Shambhala Publications for the Heart Advice of the Week. To get yours, sign up at

Thursday, October 16, 2014

Dental Care at Lieberman

Based on a technique that the dentist used with Gregory yesterday, we have started a new tooth brushing routine. It is important to keep Gregory's teeth and mouth in good condition as a cavity or gum problem for people with dementia can be a major catastrophe including the need to go to a dental surgical location in an ambulance, putting the patient asleep, and filling the cavity.

We tried our Sonicare toothbrush but to no avail as Gregory hated and fought the hight pitched vibration and the intrusion into his mouth. As suggested by the dentist, I purchased a more reasonably priced rotating toothbrush head by Colgate. The head spins and provides multifold bushing with ease and with less vibration.

Wearing rubber gloves, I stuck my thumb into Gregory's mouth - being careful to not be in a position to be bit. I talked through and assured him about the whole experience as it was taking place. With thumb in place, one at a time I gently pulled his lips and cheeks out and away from the teeth as I glided the rotating bush head, gently and slowly against his teeth. First top, then bottom, then repeat inside.

Gregory was not happy, shouted through the mouth full of toothpaste, equipment and fingers ... but did not fight me. I continued to talk through the process with assurances that it was almost over. The turning point came towards the end, when I told Gregory that his mother IS so proud of him that he doesn't have any cavities. He calmed down and smiled.

I let him hold the toothbrush while it was on so he could feel it and helped him to use the brush to brush my teeth. He seemed to enjoy that.

Today at Lieberman

Today is Bosses day. Manny, who is so considerate and gentle with Gregory, is also very thoughtful. He brought Gregory and me a miniature potted rose bush with a sign that said, "Happy Bosses Day!"

While covering Gregory with a blanket as he settled down to a nap, I accidentally hit him in the head with Peaceful, his Teddy Bear. It didn't hurt but Gregory appropriately and loudly announced, "Boink!"

When offering him a selection of chocolate from the Godiva box, he told me, "You pick. You have good taste." As usual he enjoyed his chocolate savoring each bit for a long time with his eyes closed.

I have put together a "Memory Book," filled with 8x10 photographs of our parents, family, friends, and pets. He seemed to enjoy seeing all the familiar faces but wasn't sure what he needed to do with the information. I assured him that he just had to enjoy the memories and love. He relaxed.

I made the mistake, which I will not make again, of telling him (as we looked at the photograph of Broadway, our first cat who died some 30 years ago) that Broadway was dead now. A look of utter sorrow took over his face as the tears poured down his cheeks while he muttered, "I didn't know. No one told me. I didn't even know."

I felt so sad for him. It was as if he had found out for the first time that she was dead. I held him close and we rocked for a while until he settled down. From now on when looking at photographs I will not place the person or pet as alive or dead. No need to know.

Wednesday, October 15, 2014

New Role Playing Communication

Previously I have mentioned that a new way of communicating with Gregory is through "Role Playing." With this type of communication/interaction, there is no meaning or information transfer but rather a way of being together in the present here and now.

Previously I mentioned his playing: 1) Italian (with accent but making no sense,) 2) Russian (with accent but making no sense,) 3) "Retard" (with gibberish - excuse me for being politically insensitive but that best describes how he plays the role.) When he begins one of his roles, I will imitate it with him. After each role playing takes place, both Gregory and I usually melt into giggles having had a wonderful time.

Today I was at Lieberman bright and early at 8:30 to help Gregory get through a dentist visit appointment at 9:00. While we were waiting for the dentist to be ready I experienced two new roles. 1) Halloween Monster (with arms extend in front of him and hands clawed with a deep guttural roaring,) and 2) Play Dead.

During the entire teeth cleaning experience Gregory cooperated but yelled and screamed Ouch, ouch, shit, ouch, stop, you're hurting me. I do not think Gregory was in a lot of pain but just didn't like the dentist playing his mouth, pulling on his lips, and scraping his teeth and gums.

"Playing Dead" took place when the dentist withdrew his tools from Gregory's mouth for a moment and Gregory called out, "You killed me," opened his eyes as wide as they could go, lolled his head to the right, tongue hanging loosely from his mouth, eyes closed!

Then we giggled again.

Tuesday, October 14, 2014


Shared by Dementia Care Specialists on Facebook:

Please send good thoughts to Karen Doyle, who writes: 
"I thought the caregivers might benefit from a person who still has enough left to share the early effects of dementia on us who suffer from it. I am 59 years old and just diagnosed with dementia. Over the past years I have slowly lost my memories of my life. 
I've always had problems with my memory, especially during stressful times. I still know who people are but without the memories to go with the person, the person does not have the same meaning to you. You know it's there - you know you love them - you just can't find it - can't feel it - can't express it. 
And then the anger comes because you are lost and empty and scared and alone without understanding. All you want is your life back but you don't know where it went. You sit and stare and search the empty voids of your mind trying to find yourself and refusing to believe you and your life are disappearing before your very eyes. You fight with all kinds of emotions that you never had to deal with before because you had the years of your experience in life to help you. 
You see - without the memory - you have nothing - therefore you feel as if you can do nothing. Scary right?? 
Hoping this might help at least one person out there. It's all I have left to give. God said share my pain and I will obey."

I Don't Know Why I Love You Like I Do

The other day, when Manny asked Martha if she believed in God she replied "Of course I do."

He asked her if when she wakes up each morning does she think about God because she is alive to face another day. Her reply was, "I don't because I didn't ask for the new day."

Today he asked her the same two questions. The answers were: 1) I didn't want to offend you by saying that I am not sure I believe. and 2) I don't think about God ... He has to think for himself!"

As sung by Gregory's table mate Martha. Listen carefully as she invents the lyrics!

Sunday, October 12, 2014


Visited Gregory yesterday. Arrived before dinner and visited. Sat during dinner and visited. Went back to his room after dinner and visited.

Visited. What does that mean?

In our narrow world it means repetition and simplicity. Playing, eating, sipping water or juice, watching South Pacific (over and over again,) putting on a "Peaceful the Bear" puppet show.

Sometimes just quietly hold hands while we sit together, him in his wheel chair and me on a stool at his side. He doses off. I look at him closely, wondering.

The other day, my outer voice said, "I miss Gregory."

My inner voice said, "You shouldn't miss Gregory. He is still with you."

I realized that what I miss is my old life with Gregory. In many ways even when he was a lot more available that "old life" had passed with only the memories left.

It was an abrupt, unexpected ending last January 2014 when I had to call 911 to help me deal with his violence and then to find Lieberman Memory Care Center for him.

But that was ten months ago and both Gregory and I have settled into our new lives.

What I miss is living with a person in a relationship that has 40 years of experience and practice. I miss the little sound bites, little sayings, little doings that no longer exist. I miss our conversations. I miss waking up in the morning next to him. I miss sharing a dinner out. There is so much I miss.

But amazingly enough, Gregory and I continue to build new experiences based on his current level of ability. I pop a mini-cookie into his mouth and he replies "mmmm." I stick a pretzel rod into his mouth and let go. He knows to reach up and hold it and finish eating it.

If the half a cup of water is left close enough, sometimes he reaches over picks it up to take a drink. When he gets nervous that his wheel chair is being pushed down the hall too quickly, I reply, "No, it's OK. I am a safe drive. A very safe driver."

We do "forehead kisses" by leaning our foreheads against each other in a 30 or 60 second "embrace." We kiss on the lips. I make a loud smacking, high school newly learned how to kiss sound to make sure he gets the idea. Recently he has begun making the sound too. Sometimes when we kiss he says, "More."

He does his "jabber routines" in various languages. They make no sense but he is able to carry on and then we both giggle at his joking in Russian, Yiddish, Italian, Insane Person.

He will give me a "look" and I will ask, "What?" He will say "What?" in return. We go back and forth maybe some 6 or a dozen times: What? What? What? What? Then we giggle.

When he tries to say something or tell me something and gets frustrated at being unable to do so, all I have to do is say, "I know." And he calms down, trusting that I do understand. Sometimes I do, most of the time I only understand that he is upset and that my sound bite can settle him.

I tell him stories about his, our past and he seems to enjoy them. Sometimes he gets melancholic but usually with a sadness of joy at remembering.

In his world, our life is full. In my world, I am content. Or as I say "STRANGELY CONTENT."

The Journey

The Journey
By Mary Oliver
One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice—
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do—
determined to save
the only life you could save.
—Mary Oliver

Saturday, October 11, 2014

The Voice of Lieberman

Lieberman publishes a house newsletter called "The Voice of Lieberman." Gregory was featured in this quarters edition. The first part is basically Gregory's curriculum vitae while the second part consists of Gregory's stories. 

We are looking forward to having show of Gregory's paintings  sometime soon. They will be on display in the first floor lobby area. You will hear more about this when the times gets closer and when we know when the OPENING party will take place.

Clear as Day

I made a peach pie and when I showed it to Gregory he replied (with excitement,) "Wonderful." Clear as day!

I told him that it was close to dinner so he could have some afterwards. "NOW," came his demand. Clear as day!

As I forked a piece of pie into his mouth, he closed his eyes and savored it! Clear as day!

After several mouthfuls I asked if we could save the rest for later, "OK." Clear as day.

His delicious dinner (I know because I tasted everything) dinner consisted of brisket, oven fried new potatoes, mixed vegetables, and devil's food cake with a cup of coffee.

After dinner we went back to the room to visit for a while. Finally it was time for me to leave so I went through my usual "exit procedure."

"I think I'll leave now (I don't say go home, I say leave) and I'll see you tomorrow. OK?" I wait for my statement to register and for him to acknowledge.

Sometimes he is light about my leaving and replies "OK." Other times he gets sad or needs to tell me about something (which he usually is unable to do,) so I stay a little longer and then go through the "exit procedure" again.

Yesterday, CLEAR AS DAY, he said "OK, I love you so much!" Clear as day.

I gave him a big hug and kiss saying, "I love you so much more (more being a play on words we always used to do.)

He came back with, "More please." So we hugged more, more and more.

Little events like this make my world large!

Thursday, October 9, 2014

Glen Cambell's Final Recording

Click on link below to hear the song:

Glen Campbell has been very public about his battle with Alzheimer’s, bravely staging a farewell tour after his diagnosis in 2011 and even allowing camera crews to capture those performances for a new documentary. Now, he has released a new single, taken from the final recording session of his career.

According to Campbell went into the studio in January 2013, just months after his final public performance. The resulting track is ‘I’m Not Gonna Miss You,’ a rumination on everything that Alzheimer’s is slowly taking from Campbell as he enters its advanced stages. Campbell co-wrote the song with Julian Raymond and recorded it specifically for ‘Glen Campbell: I’ll Be Me,’ which is set to open in theaters in late October.

The track is both sad and almost unbearably resolute, as the singer pays a final farewell to his wife and his life while acknowledging that much of the burden for what’s ahead will not fall on him: “I’m never gonna hold you like I did / Or say ‘I love you’ to the kids / You’re never gonna see it in my eyes / It’s not gonna hurt me when you cry / I’m never gonna know what you go through / All the things I’ll say or do / All the hurt and all the pain / One thing selfishly remains / I’m not gonna miss you.”

Interspersed with scenes from Campbell’s final tour as well as flashbacks from his life, the video serves as a testament to the legend’s impact in both his musical and personal life, as well as a fitting farewell to one of the leading musical lights of his generation.

Campbell was moved to a full-time care facility in April, and his wife, Kim, has said that it is unlikely that he will ever perform in public again.

I'm still here, but yet I'm gone
I don't play guitar or sing my songs
They never defined who I am
The man that loves you 'til the end
You're the last person I will love
You're the last face I will recall
And best of all, I'm not gonna to miss you.
Not gonna miss you.
I'm never gonna hold you like I did
Or say I love you to the kids
You're never gonna see it in my eyes
It's not gonna hurt me when you cry
I'm never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains
I'm not gonna miss you
I'm not gonna miss you

As I am listening over and over to Mr. Campbell singing this song, I am sobbing, howling, and wondering where can I go with this pain? Where can I go? Gregory is still so much of my life that the thought of him disappearing even more stabs my heart without mercy. And his death, while a blessing, will be intolerable for me! Hearing the loss of Alzheimer's from the affected one's point of view is beautiful, strangely comforting, realizes what a gift I have been able to be for Gregory, but makes me feel so sad and alone.

Monday, October 6, 2014


Yesterday at Lieberman the Sunday afternoon entertainment was provided by Eraina on the piano. After playing several classical selections, she passed out a booklet of tattered, well used, but large print readable, clearly numbered lyric pages. The songs she selected were good for the "crowd" and I was surprised how many of the attendees were able to read and/or sing along.

One in particular moved me to tears as I sang it to Gregory. What made it poignent was that he looked at me, with intense eye contact through the entire song. Often he has trouble focusing, let along for a long period of time. This time he was mine, and I was his. He even knowingly shook his head "Yes" several times. We held hands throughout.

Here is the song:
as sung by Mandy Patinkin

Opens in new window. Click red arrow in upper left hand corner to hear song.


Everything went wrong,
And the whole day long
I'd feel so blue.
For the longest while
I'd forget to smile,
Then I met you.
Now that my blue days have passed,
Now that I've found you at last - 

I'll be loving you always
With a love that's true always.
When the things you've planned
Need a helping hand,
I will understand always.


Days may not be fair always,
That's when I'll be there always.
Not for just an hour,
Not for just a day,
Not for just a year,
But always.

Dreams will all come true
Growing old with you
and time will fly
carrying each day more
than the day before
'til spring rolls by
then when the spring  time has gone
then will my love linger on 

I'll be loving you, oh always
With a love that's true always.
When the things you've planned
Need a helping hand,
I will understand always.


Days may not be fair always,
That's when I'll be there always.
Not for just an hour,
Not for just a day,
Not for just a year,

But always.

Not for just an hour,
Not for just a day,
Not for just a year,
But always.

Friday, October 3, 2014

Happy Halloween

I bought a plastic Halloween pumpkin for Gregory. Wouldn't you know it, when I showed up with it, he was all dressed on black! Happy October.

Here is Gregory with Peaceful and the pumpkin playing around, making faces.