Martha

Martha is one of the Lieberman Residents who has become part of Gregory and my Lieberman Family. She sits to Gregory's left for breakfast, lunch and dinner. She is fairly sprite, is able to feed herself despite severe arthritis, has a wicked sense of humor, and at times makes no sense through her Dementia. None-the-less, the is a great conversationalist.

She doesn't like to drink much, she especially doesn't like the juice they serve morning, noon, and night. So whenever I am with Gregory at meals, I try to get her to drink more. "MARTHA (I shout - as she is hard of hearing,) you need to drink more. You know the human body is made up of 80% water!" Sometimes she drinks, sometimes she excuses.

I started bringing her (and Gregory) a glass of ice water. Gregory drinks both his juice and his ice water. Martha ignores her juice and often forgets the ice water. The way I get her to drink, if she won't follow my cajoling, is to lift my glass to her saying, "L'Chaim," which is a Jewish toast meaning "To Life."

This will cause Martha to pick up her glass and reply, "L'Chiam." Sometimes she takes a drink and sometimes she just puts the glass down. "No no, Martha," I insist, "One has to drink when a toast is made." She will begrudgingly but lovingly pick up her glass again and take one or two drinks.

One day, to get her to drink a little more, I proposed a toast, "MARTHA, To a long life." She looked at me with an evil wink of her eye and replied, "I am 97 years old! How much more life are wishing on me?" Then she chuckled and I did as well.

The Technology of Life

Humor helps during times like this and over the twelve years sharing the Dementia/ Alzheimer's path with Gregory, I have developed a number of "sound bites" to describe transitions, experiences, attitudes.

After Gregory died and I said goodbye to the beautiful temple that was his body and home for 67 years, I developed this technological sound bite which helps me deal with his passing.

I have been referring to Gregory Version 1.0 to reflect the Gregory I have known and loved for the last 40+ years. All the minor changes through his life would be Version 1.1, 1.2, 3.1-2-3, 7.8, 9.9 etc.

Gregory Version 2.0 as his body lay in his bed at Lieberman, at rest but definitely an empty vessel. I was worried that I would not be able to face him this way, but it was still my Greggy and I was able to hold his still warm hand, kiss his lips, and sit with him a while.

Gregory Version 3 as “Gregory in a Box” or his cremated remains. This part's experience is yet to be determined. I pick him up today and am a little frightened at how I will deal with it. His "carbon footprint" will rest in his favorite Grandma Carrie's Sewing Box. In a future blog, I'll post of photograph of this beautiful antique piece at a later date and fill you in Gregory and Carrie's loving relationship.

and 

Gregory Version 4 as my Guardian Angel. I am sure he will be "large" enough to your Guardian Angel as well so feel free to ask him to be there for you!

A Joke

Yesterday at dinner, Geraldine, one of Gregory's table mates, started a joke: 

“Knock knock,” she said.

Wondering if it was going to be a joke or curious to see where she would take it, I answered, “Who’s there?” 

To which she replied, completing the joke, “It’s me. I’m here.”

There is something highly telling here.

The Hypnotist

This is a departure for me. A friend, who is a senior, sent it to me, who is a senior; and it struck my funny bone. See what you think?

• • •

It was entertainment night at the senior citizens' center.  After the community sing along led by Alice at the piano, it was time for the star of the show - Claude the Hypnotist!

Claude explained that he was going to put the whole audience into a trance. "Yes, each and every one of you and all at the same time." said Claude.

The excited chatter dropped to silence as Claude carefully withdrew from his waistcoat pocket a beautiful antique gold pocket watch and chain.

"I want you to keep your eyes on this watch" said Claude, holding the watch high for all to see. "It is a very special and valuable watch that has been in my family for six generations" said Claude.

He began to swing the watch gently back and forth while quietly chanting "Watch the watch --- Watch the watch --- Watch the watch"

The audience became mesmerized as the watch swayed back and forth.  The lights were twinkling as they were reflected from its gleaming surfaces.  A hundred and fifty pairs of eyes followed the movements of the gently swaying watch.  They were hypnotized.

And then, suddenly, the chain broke!!!  The beautiful watch fell to the stage and burst apart on impact .

"SHIT" said Claude.

It took them three days to clean up and Claude was never invited back there again.

Martha and the Bay Leaf

Lunch today began with vegetable soup. Martha found a bay leaf in her soup and put it on the table. Either she knew that the bay leaf is for seasoning only or after having tried to eat it, she set it aside.

I told Martha the story about the bay leaf and my family. My mother would use two or three bay leaves in any one of a number of soups she would make. She would try to find the bay leaves and remove them before serving dinner but it wasn't always easy. And/or she didn't try too hard?

When one of the family members would find the bay leaf, mom would announce, "That means you have to wash the dishes. Who ever finds the bay leaf has to wash the dishes!"

"So," I said, "pointing to the bay leaf, Martha, you have to wash the dishes from today's lunch!"

Martha replied, laughing, "You are a card, aren't you!" We both got a good laugh.

Flu Season II

An update. Gregory's fever finally broke this morning (without a trip to ER, thank you.) He is feeling much better as you will see in Manny's comments at the end of this post.

Meanwhile I had a talk with Lieberman's Fifth Floor head nurse director about Hospice. We had talked previously and she suggested that it is never too soon to get Hospice set up as there are many side benefits, some of which I will share at a later date.

Gregory and I have long been familiar with Hospice ever since he took training some 30 years ago and actually helped care for two people before he found a full time job and did not have time to volunteer.

He would help the caregiver(s) clean the house, go grocery shopping, help with cooking, or just sit will the ill family member so the caregiver could run errands, get away, or hide out and nap in the other bedroom.

Midwest Hospice has as it's mission: We support he whole person - body, mind, and spirit, with truly innovative world-class palliative care, hospice, and grief support. Giving you your best day, today! Imagine care differently!

In the past, Hospice was involved during the last week or month of a person's life to help them die comfortably and gracefully and to support the family as well. Now the services and time provided by Hospice has broadened.

After facing my decision to NOT send Gregory to the ER, as a staff doctor had recommended, I decided that this was a head's up to get Hospice going for Gregory. It is a difficult decision if only because it admits and accepts that he will die sooner rather than later.

Intellectually I accept this easily and will be able to make appropriate decisions as I am needed to. Emotionally is another story but I do not have to deal with that now as G is still fairly healthy and who knows when death will announce itself. No use in worrying about that which one cannot control.

Actually I feel a level of power and control over my life, Gregory's life, and over the situation having been able to make this decision. Hospice will provide needed services now and will be there when I need them the most at a later date. By then they will know me and know Gregory and will be part of our "family."

Meanwhile on a lighter note, here is verbatim, Manny's report on how Gregory is doing today as taken from his texts to me. Manny has a wicked sense of humor as demonstrated below.

Manny:

Greg ate full lunch n took  liquids normal amount ... awake all the time and serenely talking ... had a big fecal explosion at 2:45pm eroding all demonic plaques in his stommigo. 

Michael:

Your comments made me laugh out loud LOL. Thanks for the update.

Manny:

I mean it ... lol ... Ur welcome ... Y pleasure

Michael:

I can imagine that you do mean it! Just glad I wasn’t on the receiving end. And stinko! Did Gregory get the giggles?

Manny:

Smelled fantastic ... my spirit voluntarily transported to other realm

Michael:

Your spirit had no where else to go ...

Manny:

What do you expect with the lava n boulders ... browned by demonic possessions. I sprayed lavender room deodorant ... opened the window a short time ... didn't help!

Michael:

K and TKS

Manny:

K

Good Advice

This advice is so "RIGHT ON!" All the worries, sadness, dispare solved in a way that is very humorous.

Cookes

La máquina de escribir. L. Anderson. Dir: Miguel Roa. Máquina de escribi...

A moment of lightness for you! I have one just like the typewriter used on my desk!

A Funny Thing Happened On The Way To The Memory Care Facility

Eegee, a male Ethiopian assistant on Gregory's floor at Lieberman Center asked if I was Gregory's father! I was honored ... but no comment!

WARNING: Explicit Scatology

Dear J,

Thanks for your thoughts. Things have been so hectic that I haven't even had five minutes alone in which to sit down for our phone chat. Friday night G had some kind of virus (don't think it was food poisoning) had the runs and has given me quite a run since.

Shit himself, shit the bed all night. Luckily I had a package of hospital type bed squares with absorbent on one side and plastic on the other.

Slept most of Saturday in between me having having to clean him up. After some toast, tea, and yogurt he shit on both of us as he stood in the middle of the kitchen saying, "Oh oh, Oh oh." I didn't know where to start to clean up the mess.

I have started having him sit on the pot every hour on the hour. Have caught most of the accidents. His ass is so raw that it hurts to look at and I am applying medicated cream.

Woke him up through the night and again caught most of the accidents. But toilet paper skills were sadly lacking and that paired with communication deficiencies made it an almost impossible situation.

Today is Sunday and he is still messing his pants. We will have another binding banana and oatmeal for breakfast and see what the day brings.

All this with the inability to wipe his own ass let alone communicate his needs or understand my questions. So like a baby flailing in its poop, that is what I am dealing with.

When he is sitting in one place he still looks and feels like Gregory. But at least with this weekend's illness, none of the Gregory I know is here with me.

I know your comment "You are not alone." means you empathize with me and wish you were here to support me but guess what, I am alone. And numb. Beware the IDES of MARCH.

And Emma decided to throw up twice. At least she did it in the middle of the bathroom tile so the grout is safe as is the bedroom rug. A bit of humor.

Michael

The Difference Between Old Age and Alzhiemer's

There has been an old joke around: Do you know the difference between Old Age and Alzheimer's? People who are older forget where they put their glasses. People with Alzheimer's forget they wear glasses.

Not funny but to the point. Recently Gregory has been demonstrating the joke. At bedtime, he gets into bed to read and is confused because the words in the book are not clear. "Put on your glasses," I say automatically.

Other times he is in bed ready to read, puts on his reading glasses, looks around the room and says, "Why is the room so blurry?"

Rocks & Hard Places

A Play in A Series of Poems

I have written many pieces of poetry chronicling the path which I have traveled with Gregory, my life partner of over 35 years, who was diagnosed with young onset Alzheimer's Disease some ten years ago when he was fifty five years old. For the most part, the feedback on my work has been favorable. 

For a next project, wouldn't it be interesting to try to write a screen play in which the audience would experience what a person with Alzheimer's goes through and what those who love him endure? It probably wouldn't be hard for me to write the screen play because I have so much material from which to draw.

The question, however, is who would want to watch it? Who would want to sit through some 90 minutes with one intermission of heaviness, sadness, frustration, confusion, depression and tears even if laced with love, compassion, insight, and humor?

Ride a Camel Anyone?

My adventurous brave little boy.

Normalcy

How can I describe what it is like to live with someone who has Alzheimer's Disease or any dementia for that matter. I have tried many ways to talk about what I go through on a daily if not hourly basis. I have used metaphor, description, poetry, humor, and tears to try to share with you what it is like. Here is my latest attempt:

Living with and loving someone who has Alzheimer's
Is like orchestrating an improvisational dance with normalcy.
No music, no planned steps, no assigned leading partner.
Not being able to anticipate turns or circling or dips or bends.
Redefining normalcy by the moment.
For him not for me is the key but
My living in his world, makes no sense to either of us!

Flummoxed

Have I used this word previously? It sounds strong, doesn't it. And that is why I used it! Other possibilities do not serve as well: perplex, puzzle, bewilder, mystify, bemuse, confuse, confound, faze, stump, fox, discombobulate. I prefer flummoxed. It sounds kind of like "brutally beat up!"


This evening, Gregory and I went to the movies to see "The Best Exotic Marigold Hotel" in which a group of strangers, British retirees (Judi Dench, Maggie Smith, Bill Nighy) decide to "outsource" their retirement to exotic -- and less expensive -- India. Lured by advertisements for the newly restored Marigold Hotel, and imagining a life of leisure in lush surroundings, they arrive to find that the Marigold is actually a shell of its former self. Though their new home is not quite what they had imagined, the retirees find that life and love can begin again when they let go of their pasts.


The movie was funny and moving as well. In some ways I hated being in the audience as an "old person" watching a movie about "old people." But it was inspiring and it would be nice to run away from my problems in Evanston and begin a new life adventure in India, even at 67! We left the movie with tears in eye and feeling a little overwhelmed by the beauty of the plot.


So here is the flummoxed part of the story. We arrived home from the movie at "Coffee Time." I prepared mine and announced to Gregory that it was "Coffee Time." He noted that. 


I showed him that I was putting some special newly purchased bakery cookies on a plate for him. He acknowledged that. 


I placed a mug near the coffee pot for him saying, "Here's your coffee mug." He registered that.


"You are doing almost everything for me!" he commented.


"No, you have to make your own coffee." I laughed.


"OK, I will."


I took my coffee and went to my computer to check e-mails etc. When I brought my empty coffee mug back into the kitchen, I saw the acknowledged cookies still sitting on the counter next to the empty registered coffee mug. Apparently I had lost him at the noted "Coffee Time" part. He got a himself a mug from the cabinet, prepared his coffee, collected his usual cookies from the drawer and proceeded to have "Coffee Time."


I know it is a little thing but I thought we had had a conversation. I was flummoxed at how it turned out, or at how it didn't. It made me feel invisible and unheard and old.

Back to Normal

Slowly Gregory is getting back to normal, whatever that means. His cold/cough is much better and many of his usual routines have returned. He made his own breakfast this morning and that pleased me. He has been joking around (mostly his sense of humor doesn't work) but he has actually been funny. He "assisted" me as I had my first attempt at baking bread with our new Cuisinart Stand Mixer. The first adventure is a braided raising Challah (egg bread.) I think I need to purchase a "Bread 101" book. Attached is a picture of the results:

Apple Pie

An old old story between Gregory and myself is about going into a diner and asking the waitress what kind of pie they had. She replied, "Yes."

A variation on this story is, "What kind of pie would you like Cherry? or Apple?" with a reply of "Yes."

Yesterday in the bathroom, I told Gregory that he should move his pills closer to his sink  so he didn't forget to take them. He replied, "OK." and left the room.

Making Up Words

I was helping Gregory with some grooming using a barber's scissors to trim the hair around his neckline. "Wait!" he blurted. "I have to get stattle."

I lost it and began a fit of giggling, he joined in. "I know, I know," he said, "that's just my version."

When I regained my control, I was able to say, "Yes, a combination of steady and stable equals stattle."

How am I able to figure these things out?