20 February

Gus Me Journal: 1/20/18. A Hard Turn

by Jon Katz
Gus Meets Susie in His New Muzzle

I had to laugh when I watched our ewe Susie check out Gus in his new muzzle. The sheep don’t recognize him, but are no longer trying to butt him to get him away.

Gus has taken a hard turn in the last few days, the vomiting and regurgitating has returned with a vengeance. We had a promising week or so, but for reasons I can’t really understand, the worst of the megaesophagus has returned.

He’s spit up on the carpet, on the kitchen floor, on our bed, my sweaters, the living room furniture. We are using up the disinfectant and Nature’s Miracle, the paper towels and plastic bags. It is not a simple way to live or a good way to live with a dog. He seems tired and struggling today.

We have become very attached to Gus, he is a member of our family now, and we love his spunk and energy an affectionate nature. He is everything we hoped for  in a small dog, except for his disease.

My hope is that this is just another in the many temporary twists and turns of megaesophagus. I am never myopic or delusional about megaesophagus, it does not go away, it cannot be cured, it can only be managed. And then, only sometimes. I’m going to change the diet again, smaller amounts several times a day, and switch to less liquid foods and mixes.

For the first time tonight, I thought, I don’t want to live like this for years and years. At the same time, we are not nearly ready to give up on Gus, we are still in the beginning stages of understanding this disease and learning how to live with it.  It’s an up and down disease, and I have to permit myself to go up and down without. Otherwise, there is no dealing with it, i am all too human.

One problem is that Gus can’t go anywhere without scarfing up everything on the ground that can be eaten, even through the mesh on the new muzzle. As the snow melts, there is more stuff on the ground for him to try to eat, and sometime, when he has to go out quickly, we can’t take the time to muzzle him.

Even one pellet or chicken dropping can make him seriously ill, and we can’t construct a prison so safe and secure that he will never eat anything other than his prescribed food. Yes, I’m momentarily discouraged, because we had a good streak with no trouble. I would not be human if that didn’t happen.

Back to the drawing board. A number of people have messaged me saying they will take Gus if we need to find a new home for him. We are not nearly at that point, I am committed to finding a stable solution, and if it does worsen, I am ethically very uncomfortable with handing over a chronically ill dog to someone else. That has never seemed right to me, speaking only for my self.

I will be honest throughout the process, of course, and we will make our own decisions. Now, our decision is to double-down and work harder to make this work.

I don’t get discouraged often or for long, and we love Gus dearly, Maria and I are not frail and we are not quitters. I can’t live with this forever, but I can do it for a long time and have many more things to try.

20 February

Joan, Lesson Four. The Improbable Becomes Possible.

by Jon Katz
Joan- Lesson Four: Now, The Next Step

No one I spoke with at the Mansion, including me, believed that Joan could ace the reading2connect workshop booklet written to revive memory in the elderly and give them the confidence and voice to read again. Joan has memory and eyesight issues, and our hope was that this exercise – completing common phrases left blank – would be stimulating for her.

This week, we had our fourth reading lesson, and Joan instantly recalled every phrase but one. I missed three.

It’s time to step up to slightly more challenging and complex tasks.  Joan’s eyesight prevents her from reading alone, but she reads very well with other people and their guidance and prompting. And reading matter is certainly working to stimulate and revive her memory.

You can see that clearly in the evolution of the four videos I posted on You  Tube. Joan remembers these exercises, is waiting for me when I come into the Activity Room carrying the booklets. She had so much fun today she gave me a soft and loving kiss on the cheek when I left.

it isn’t just that she got the answers, she seems grateful that I am taking the time to read to her and with her. There is a part of her that is very hungry for this stimulation and engagement. I’m not sure how far we can go with it, but I do feel we are just setting out together on a journey I would not have thought possible just a few weeks ago.

I asked Joan if she would like to be in one of our skits at “Night Of Four Skits” in April, she hesitated, saying softly but clearly that she doubted she could read in front of people, her eyes weren’t good, and “whatever..” I said I would stand with her and read her lines with her, and she jumped at the chance, as long as she knew she wasn’t being left alone on a stage in a room full of people.

Joan and I are having great fun, this is exciting to her, and  at the beginning of our work today she tried to tell me that it was fun for her, and exciting, and why. She got so excited, in fact, that she struggled to explain her thought process – her brain was literally running ahead of her mouth. She and I can talk to each other easily now, and I was delighted at how engaged she is in this work – everyone at the Mansion can see it.

She is a sweet and creative soul, able to write poems and paint watercolors. She has suffered great trauma, her daughter was killed by a boyfriend many years ago. Her very lovely inner soul shines through.

So come along and take a look at lesson Four. I think it’s time to step up a notch and see what happens.

I’m excited by the reading2connect experiment. It is a shame for the elderly to have to give up on reading. Perhaps it is not necessary. I’m sure going to work hard to find out.

This work is challenging my beliefs and conventional wisdoms. I need to have faith in Joan for Joan to have faith in me. As an author, I have a special feeling about books and reading, but to my surprise, so do these people at the edge of life, who have lost almost everything they ever loved.

How wonderful if they didn’t have to lose reading, and their ability to stretch their imaginations and connections to one another. Come and see how Joan is doing.





This week

20 February

Video: First Rehearsal, “Night Of Four Skits,” Madeline Reads Her Lines

by Jon Katz

Today at the Mansion, we had the first rehearsal for “Night Of Four Skits,” four short plays to be performed at the Mansion by the residents on April 5.

Madeline is one of four actors who signed up for the readings, we’re going to rehearse with her and the others every Tuesday until the performance, which will be held in the Mansion Great Room, and a week later, at the Mansion’s private  sister facility, the Cambridge Hotel.

Madeline is in her mid 90’s, she performed in community theater in New York, playing Willie Loman’s embattled wife in “Death Of A Salesman.” She is eager to do as much theater as possible and practically begs for more cultural opportunities. She admits to having memory issues, but is not prepared to write off her mind.

Gail, one of the activity director’s at the Mansion, is also excited about the reading2connect books, and has agreed to work with me on rehearsals, playing opposite roles, encouraging the actors,  and helping me stage the play.

The residents are very excited to work with these skits, sold by our new and valued friends reading2connect. They know what they are doing, everything they create really seems to work, at least so far.

The Essex, Connecticut publishing house believes that people with dementia and memory loss (the Mansion is not a dementia facility) can learn to read independently of aides and guides. I purchased a set of four skits from them for $85. Each skit has two speaking roles there is a separate book for each role.

Susan Ostrowski, a speech pathologist and Dr. Peter Dixon, a doctor and co-director of the program, creating these books to challenge the idea that people with demential could no longer read. They do not believe that is true. You can see their brief explanation of the program on this YouTube video. They believe accessible reading can make non-interactive people interactive.

The  four skits were initially written for the elderly by BI-FOLKal Productions who permitted clinicians  Ostrowski Dr.  Dixon to make minor changes. They have found that older people enjoy reading, and listening to their peers read. The skits are written to be simple to follow, relevant to the residents’ lives – preparing for winter, going to the doctor – and funny.

They are designed to draw at the innate and often wise and wry humor that characterizes so many of the people I see at the Mansion – they have, after all, seen just about everything – and they seem drawn to performing so long as they are not made to appear foolish or feeble.

No one wants to show case their memory issues. I’ve assured the volunteer actors that they will have scripts with them during our performance, their roles highlighted in yellow markers. The only hesitation I have found is when the residents ask me if they have to memorize the lines. Once I say no, they are all in. They know what they can’t do, but are unsure of what they can do. I feel my job is to give them a peek at what they can do, I see that happening with Joan. (see above.

The residents of the Mansion have absolutely no hesitations about getting up in front of a crowd, they love the idea, I think it gives them a sense of power and purpose. And it reminds the world that their minds are not dormant or useless, as the outside world often assumes.

The skit booklets are 2 to 5 pages each

Madeline, the first actor I cast,  is vocal about needing activities of the mind that celebrate culture beyond just watching TV and playing games. She is a New Yorker, with a thick bronx attitude and a New Yorker’s bluntness. She is eager to read the reading2connect books with other residents, not just me. She sometimes struggles with memory but is sharp and engaged.

I love her enthusiasm and energy, it is infectious. Next, Sylvie, Joan and Allan, the other performers. They are all ready to join me in Tuesday rehearsals, now in the regular Mansion Activity Schedule. Their families will be invited to the “Night Of Four Skits.”

Come and check out these videos.

More to come. I am lucky to have found this project, it gives real dimension to my work as a volunteer.

The Mansion program depends almost entirely on donations from the readers of the blog. If you wish to contribute,  you can send a donation to me at my post office box, P.O. Box 205, Cambridge, N.Y., 12816, via Paypal, jon@bedlamfarm.com.

20 February

Art And Me. “Thank God For Chess.” We Play On Thursday

by Jon Katz
Thank God For Chess

I brought Art a gift today, a T-shirt I found online that says “Thank God For Chess,” with a cross on the bottom.

He loved it, and put it right on, taking off one of his Biblical quotes he wears to stir the waters. He challenged me to a match, we are playing at 2 p.m. Thursday in his room. Art is new to chess, another resident, Tim, has begun playing with him, and he says it fits him. Everyone says he loves it.

Art said he loves a challenge, and hoped I wouldn’t mind beating him, he didn’t want me to hold back. Are you kidding?,I said. You can ask Maria if I hold back in chess. I warned him that I am frighteningly competitive, and will kick his ass if I possibly can, the worse the better.

He says he doesn’t doubt it.

I had a good long talk with Art today, he shared a few battles he has been having with the staff an one or two residents. Art believes God sent him to the Mansion to make sure it is run properly and when he sees something he doesn’t like, he speaks up, sometimes too often and sometimes too loudly.

The staff at the Mansion can take care of themselves and they usually work it out with Art. I realized today that Art thinks I will abandon him because he sometimes is a troublemaker, and he knows some of his views are not popular. He knows I am close to the staff.

I explained to him that I don’t get involved in internal things at the Mansion, I just do my work as a volunteer, and I would not might abandon him for speaking up. I won’t,  it is not my business. From where I sit, I said the Mansion staff works hard every day and cares deeply about the people who live there, they do wonders with the limited resources that they have.

I said I am not as angry as he is, nor as judgmental and God didn’t tell me much about my work at the Mansion, other than perhaps giving me the idea to do good when I can. And to walk gently on the earth.

A Christian idea I have embraced, I said, was empathy and compassion for the vulnerable. Even  him, I said, half-joking. It is strange, Art gets me, we have a very curious but strong connection to one another.

I told him  seeing him every day would probably send me over the edge, but I look forward to our meeting once or twice a week. I told him about boundaries, they are important to me, and I  try hard to mind my own business.

I look forward to playing chess with Art. Since he started playing, I think he has settled and calmed a bit. I remember times in my life when playing chess was a kind of meditation for me, it settled the storm in my head.  Art’s faith sometimes leads him to anger.

Mine leads me in a different direction. But we are connected to one another, brothers in some way I don’t understand.

I said I thought the residents and staff might like this new T-shirt more than some of the others he sometimes wears.

I told him I’d see him Thursday, he should prepare to get his ass whupped. That will really piss him off.

20 February

When Your Eyes Tell You What The Heart Wants To See

by Jon Katz
What Your Heart Needs To See

Some years ago, at a book reading in Ohio, I met a remarkable woman named Veronica Hallissey, she was in her early 80’s then and we connected quite strongly at my talk, even though I only saw her for a few minutes. I still remember her dignified presence and her sparkling blue eyes.

I have no seen Veronica since, or spoken with her, although we somehow have remained close in the way that kindred spirits do when they meet. They just trust and love one another, period, and the proof of a true soul connection is that it never dies, it is beyond words and speech.

Five years ago, Veronica started a blog called From An Upper Floor, she writes on it every day, the most beautiful poems and essays and and reflections. It is an elegant blog, she writes like E.B. White with gentleness, thoughtfulness and some magic.

She has read my blog faithfully for years, and she and Maria correspond often. One of the tragedies of being a man is that even the women who like you would rather talk to another woman given the chance. It is just the way of the world and I respect it.

Hallissey has the gift, she has been writing poetry since 1960 and her poems are wise and lyrical and poignant. I read “Gates Of Heaven” this morning and marveled at the feeling and grace in it.

I was pleased to get a message from Veronica this morning, even her letters are poems.

“Jon, I just have to tell you that your eyes tell you what my heart needs to see.I gasped when today’s photo of winter past came on the screen. Somewhere in my memory  bank is such a place. This is the most  beautiful planet in the universe I am sure. Your eyes see the details most clearly and most beautifully. Even the mundane take on a beauty seldom seen. Thank for this particularly, it is a special gift to me. Sincerely, Veronica.”

I am fortunate to have taken a photo to inspire a letter than that, it alone makes life worthwhile.  The photo was called “Winter Pasture: White Creek,” and Veronica has prodded me to put it up for sale in her honor. I also ordered a print made so I can send it to her free of charge. Inspiration fee.

Thanks Veronica, I am grateful to see what your heart sees, you have such a wonderful heart.

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