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.

Saturday, August 30, 2014

Graph This

My life could be compared to a graph, a diagram showing the relation between variable quantities, typically of two variables, each measured along one of a pair of axes at right angles.

Sometimes I feel like a flat line, slogging through each day trying not to let too many emotions overwhelm me. I try not to think of the past, of Gregory when I am at home, of home when I am with Gregory.

Sometimes I feel like a saw toothed line, now up, now down, now happy, now sad.

Over time I am sure that the graph of my life is on an upward trend towards healing, towards coping, towards learning to live my life without the Gregory I first met some forty years ago.

When I am with him the line stands still, I am happy, the graph on hold. We have developed our small interactions that may or may not mean anything to an observer but which mean the world to us, a look here, a wink there.

I tell him I love him and he replies, "OK" or he shakes his head. Or I ask, "Do you love me?" and he nods. I get silly and in a high falsetto voice screech "I love you this much!" with my hands flying out to my sides or over my head. He giggles and that makes me laugh as well.

I take his Teddy Bear, named Peaceful, and put on a puppet show. The bear dances, and sings, and hugs Gregory while smothering him with kisses. Gregory laughs, or looks at Manny with his This Guy is Crazy look, and once Gregory grabbed the bear's nose in his mouth, biting and  "grrrrring" back at the bear as he shook his head from side to side bear style.

We hold hands with the hand holding in constant motion, perhaps to cut through the malaise  that often accompanies Gregory's inability to focus and to let him know, "I am here. I love you." I stroke his leg or squeeze his arm with the same message.

Or we sit in silence, just being there together; looking out the window, watching a movie on his television, spending time in the shaded park out back.

I give him treats which he easily receives as I pop them into his mouth: mini-cookies, chocolates, a drink of juice, a piece of fruit. Sometimes I put a pretzel rod into his mouth and he will reach up to hold it as he takes a bite and then continues to feed himself until the pretzel is gone.

I break into song, "If you're happy and you know it clap your hands," as I clap my hands. Second verse I clap his hands and sometimes he will continue clapping along as I sing.

When I am not with Gregory, the line can stand still as well. I loose myself in the here and now of a cup of coffee on the balcony over breakfast or on a walk in the neighborhood.

I sit at my computer and write as the ideas flow non-stop trying to keep up with my typing skills.

Grocery lists, folding towels, washing dishes, petting the cats come without the need for much through and they are good. A visit with friends or dinner out help time pass.

Then, when I least expect it, the graph line spirals out of control and I am mired in grief and sorrow and tears and loneliness. And I cannot imagine how I will continue to go on without the man who I love more than a graph could ever represent.

And I cannot see for the tears which splash my glasses and chill my face as they run down my cheeks. And the emotions are so strong that panic sets in at having to function while the emotions continue to escalate.

And graph lines have upward or downward trends, they DO NOT spiral. They do not spiral.

Then being spent, somehow a calm enters the lines of the graph and for a while the line is again flat. Emotions kept at bay. Sometimes up, sometimes down, sometimes happy, sometimes sad. And the next day will arrive, trending, trending.

I say I am aware of GRIEF sitting on my right shoulder 24/7/365 but also great JOY sitting on my left shoulder. Most of the time I am in balance.

Sunday, August 24, 2014

Sundays at Lieberman

Every Sunday at The Lieberman Center, there is a concert in the Community Room from 2:00-3:00. This time Gregory, Manny, and I were joined by friend/neighbor Sheryl and friend Pat (not pictured.)

Quest Physics

The physics of the quest, a force in nature governed by laws as real as the force of gravity, goes like this:

If you are brave enough to leave behind everything familiar and comforting

And set out on a truth seeking journey, either externally or internally

If you are truly willing to accept everything you experience on that journey as a clue

And if you accept everyone you meet along the way as a teacher

And if you are prepared most of all to face and forgive some honest realities about yourself

The truth will not be withheld from you

Atraversiamo - Let's cross over!

Taken from Eat Pray Love


Sometimes to lose balance for love
Is part of living a balanced life.

(Idea from Eat, Pray, Love)

Saturday, August 23, 2014


I say:
I love him.
I miss him.

The Universe says:
So miss him.
Send him light and love every time you think of him,
And then continue with life.

(Idea rewritten from Eat, Pray, Love)

Thursday, August 21, 2014

A Bit of Tongue

DISCLAIMER: Gay Love discussed ... but then again Straight People French Kiss also!

Gregory, as you know, was diagnosed with Alzheimer's Disease over ten years ago. He entered the Lieberman Center last January when his abilities got to the point that I could not continue taking care of him at home.

He continues to know who I am, and often cries tears of joy when he sees me. I try to be as hands on as possible: holding hands, stroking his arm or hand, patting his knee or leg, giving massages, rubbing his newly cut crewcut. You can imagine that when the ability to communicate continues to disappear, any form of connection between him and me is so important to both of us.

Sometimes he cries from sadness. It is as if the "vail of life" slightly separates and he realizes the "boat he is in" and is overwhelmed with sadness. When that happens (it happened twice yesterday) I rock him and we usually cry together.

Two amazing things happened yesterday that I so appreciated and enjoyed.

During one of the sad crying, I was holding him and rocking with him (not as easy as it sounds since I have to straddle his wheel chair to get close enough) when he reached up and hugged me around the shoulder. He usually cannot communicate brain to arm so this was a monumental experience.

The second amazing thing happened when I said goodbye. When I say goodbye, I go through my usual speech, "I am going to leave now but I will visit again tomorrow. OK?" I wait for an answer. If he needs more time to think about what I said or doesn't seem to be focused, I repeat myself, "I am going now but I will visit again tomorrow. OK?" Sometimes it takes three times. Finally he says something like, "OK." or "That will be fine."

Then I give him a kiss. Usually the kiss is a pre-teenager type kiss with emphasis on squeezing my lips to his and then finishing with a loud SMACK to make sure the love of the kiss has been delivered. Due to the delay in his thinking, he usually SMACKs back after I have moved my lips away from his.

This time as I was pressing my lips to his, he slightly opened his lips (like big people kiss) and then tentatively explored my mouth with his tongue. Wow. Just like the old days when love was passion. I explored back and our tongues flicked each other back and forth. I could tell that he knew that we both knew that the communication had been made. It was so important to have experienced this once again.

Monday, August 18, 2014

This Evening at Lieberman

I spent three hours with Gregory today.

From 2:00-3:00, Barbara, a volunteer, played piano. I think she is older than many of the residents on the floor and her energy, or lack of it, showed in her playing.

I am not criticizing, just describing. Many residents slept, many stared, a few clapped their hands or sung. Each, in their own way, enjoyed the performance.

Back in Gregory's room, we partook of some of the food treats I had brought in: pitted cherries, fresh figs, animal cookies, refrigerated chocolate covered mini donuts, and pretzel rods.

The way to Gregory's heart is through his mouth ... really! Manny was placing a cherry on Gregory's specially handled and weighted fork and Gregory was methodically able to bring the cherry to his mouth, pull it off with his teeth, and enjoy the wonderful taste with his eyes closed.

At one point I asked Gregory to give me a cherry. It was already skewered onto his fork, I put my face close enough to him and he actually put a cherry in my mouth! Oh joy!

Later when I gave him a pretzel rod, I labeled it out-loud to him, "Pretzel! Can you say that." Without much thinking, Gregory responded, "Pretzel." Manny and I were elated, applauded, and Gregory smiled.

Gregory noticed the photograph of Julia Child which sits in a black frame on his window sill. "Oh wow!" he said, as if discovering not only the photo for the first time but also the memory's return for the first in a long time. Tears (of joy) came to him and I gave him a hug. I asked if he wanted me to tell the story? He shook his head, "Yes."

I proceeded to retell the story of how Julia Child used to live in the same neighborhood as Gregory when he lived in Boston. They used to run into each other at the butcher and developed an acquaintanceship over discussing the various cuts of meats. Gregory has always prided himself in this story and told it many times over when he was able.

On listening to my retelling with rapt attention, the tears flowed in abundance with the look of such pain, longing, remembering, being overwhelmed, uncontrollable grief, not sure exactly which emotions were really present.

I hugged him and we rocked and cried together. Sometimes I am grateful that Gregory still has emotions and is able to express them but this time I wondered if the pain was worth their recalling.

A little later he started calling, "Momma ... momma ... momma." He did this chain of three several times and the tears began again. I am not sure what prompted this or why and according to Manny, it was a first. We rocked and cried again.

Now that it was getting close to dinner time I decided I needed to try to cheer him up so I asked him if he wanted me to do "The Teddy Bear Puppet Show?" He responded by shaking his head, "Yes."

His Teddy Bear, named Peaceful, is large enough and flexible enough that when grabbed by the back of its neck, one can do a pretty good imitation of having the bear dance, sing, act silly, wave, give kisses, whatever.

So we did the usual show, Gregory began to smile, kissed Peaceful in return, and we all broke into giggles as how silly I was being.

The other day, during a similar puppet show, Gregory instead of kissing the bear, grabbed its nose in his mouth, bit hard, shook his head back and forth, and "Gurrrrrrred" as if he was a bear himself.

The Teddy Bear's name is "Peaceful." "Peaceful," Gregory repeated and we went off to dinner.

Saturday, August 16, 2014

Ten Tips From Dotty

In this article they used a word I like: The Deeply Forgetful!

Dotty, Alzheimer's Reading Room
Went to Heaven on May 25, 2012

Dotty's Ten Tips for Communicating with a Person Living with Dementia 
  1. You know what makes me feel safe, secure, and happy? A smile.
  2. Did you ever conside this? When you get tense and uptight it makes me feel tense and uptight.
  3. Instead of getting all bent out of shape when I do something that seems perfectly normal to me, and perfectly nutty to you, why not just smile at me? It will take the edge off the situation all the way around.
  4. Please try to understand and remember it is my short term memory, my right now memory, that is gone -- don't talk so fast, or use so many words.
  5. You know what I am going to say if you go off into long winded explanations on why we should do something? I am going to say No, because I can never be certain if you are asking me to do something I like, or drink a bottle of castor oil. So I'll just say No to be safe.
  6. Slow down. And don't sneak up on me and start talking. Did I tell you I like smiles?
  7. Make sure you have my attention before you start blabbering away. What is going to happen if you start blabbering away and you don't have my attention, or confuse me? I am going to sayNo - count on it.
  8. My attention span and ability to pay attention are not as good as they once were, please make eye contact with me before you start talking. A nice smile always gets my attention. Did I mention that before?
  9. Sometimes you talk to me like I am a child or an idiot. How would you like it if I did that to you? Go to your room and think about this. Don't come back and tell me you are sorry, I won't know what you are talking about. Just stop doing it and we will get along very well, and probably better than you think.
  10. You talk too much -- instead try taking my hand and leading the way. I need a guide not a person to nag me all the time.

Monday, August 11, 2014

The Afterlife

Shared with me by friend Stevie Kallos, author of Broken for You, Sing Them Home, and soon to be released Language Arts. I loved her first two books and if you haven't read them, run out (don't walk) and buy them!

This poem by Billy Collins spoke to me saying, "Life is what you make of it!"

The Afterlife by Billy Collins

They're moving off in all imaginable directions,
each according to his own private belief,
and this is the secret that silent Lazarus would not reveal:
that everyone is right, as it turns out.
you go to the place you always thought you would go,
the place you kept lit in an alcove in your head.

Some are being shot into a funnel of flashing colors
into a zone of light, white as a January sun.
Others are standing naked before a forbidding judge who sits
with a golden ladder on one side, a coal chute on the other.

Some have already joined the celestial choir
and are singing as if they have been doing this forever,
while the less inventive find themselves stuck
in a big air conditioned room full of food and chorus girls.

Some are approaching the apartment of the female God,
a woman in her forties with short wiry hair
and glasses hanging from her neck by a string.
With one eye she regards the dead through a hole in her door.

There are those who are squeezing into the bodies
of animals--eagles and leopards--and one trying on
the skin of a monkey like a tight suit,
ready to begin another life in a more simple key,

while others float off into some benign vagueness,
little units of energy heading for the ultimate elsewhere.

There are even a few classicists being led to an underworld
by a mythological creature with a beard and hooves.
He will bring them to the mouth of the furious cave
guarded over by Edith Hamilton and her three-headed dog.

The rest just lie on their backs in their coffins
wishing they could return so they could learn Italian
or see the pyramids, or play some golf in a light rain.
They wish they could wake in the morning like you
and stand at a window examining the winter trees,
every branch traced with the ghost writing of snow.

Saturday, August 9, 2014

The Invader

In my deep, dream filled, to bed for the night, sleep
I felt someone brush lightly against my shoulder
Had someone gotten in and invaded my dreams?

I was filled with fear as I fought to bring myself awake
To shout out and reach over to shake Gregory awake
I needed him there with me to protect and care for me.

But he was not there, nor was the invader, I was alone
With only loneliness and grief, so I cried my fear.
Realizing this is my life for the rest of my life, alone.

Monday, August 4, 2014

Recovering Catholic

Gregory has always referred to himself as a "Recovering Catholic." While SPIRITUAL he has never as an adult considered himself RELIGIOUS.

So today while visiting with Gregory and Manny, his helper at Lieberman, I found out that Manny is a practicing Catholic and mentioned that Gregory was a Catholic also.

Much to my amazement the following transpired:

"Michael .... pause ...," clearly and loudly said Gregory.

"Michael ... pause ..., " said Gregory again.

"Michael ... pause ...," he said a third time.

"Yes," I waited patiently while Gregory gathered his thoughts.

"Don't go there. I don't want that to happen. Don't do that." he finally said adamantly.

"I know. I did say you were a Recovering Catholic and have been for a long time." I corrected as Gregory continued eye contact. "I know you are not a Catholic."

"OK," he finished assured that I would not say that he was a Catholic.

I do not mean to offend any of my religious readers, but you have to remember that Gregory until the Alzheimer's took over, was always strong in his opinions. I had not seen this level of strength of opinion for quite a while and loved every minute of it!

Saturday, August 2, 2014


From my friend Pat:
“A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words.”
Thanks Pat!