Day: February 8, 2018

 

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“Love is our true destiny. We do not find the meaning of life by ourselves alone – we find it with another.” – Thomas Merton, Love and Living.

I was poring over the reading2connect website today looking for new books to buy for the Mansion residents, and one caught my eye, I had somehow missed it before, it was called “One Set Of Four Skits,” and it cost $85. This is a set of four skits.

Each skit has two speaking roles. There is a separate booklet for each role, so there are eight booklets in all. The skits were written for seniors bh BI-FOLKal Productions, who agreed to let authors and researchers Susan Ostrowski and Peter Dixon make some minor adaptations to increase readability.

Older adults, say Susan and Peter (yes, we are becoming friends) very much enjoy reading and listening to their friends and peers read. The skits – their titles are “The Present, The Physical, The Couple, and Ready Or Not, Here Comes Winter, were chosen because they are relevant and humorous.

“With these skits in hand,” say the publishers, “our readers’ innate senses of humor and understanding of what acting entails become evident to all.”

I am  excited about these skit books, I intend to produce these skits and gather a cast and present them at the Mansion in the Spring.  I’m trying to corral Maria into joining me, she loves the Mansion work. I was a producer once – Executive Producer of the CBS Morning News, and I hated it, but I am overjoyed to be producing these stories.

I talked to Morgan Jones, the Mansion Director about the four skits today, and she was also excited. She said she loved the idea and added that she’d invite all of the families of the residents and the community as well.

We’ll stage it in the Mansion Great Room, I’ll go and start recruiting a cast tomorrow.

The skits are relevant and simple. “The Physical ” is about a physical exam, a very relevant subject. It opens with a doctor saying “For a man of 60, you’re in remarkable shape.” The doctor examines the patient, and adds, “My goodness, your father must have lived a long time.”

I have four residents in mind, they are hams, I think, and they all have a sharp sense of humor and irony. They are not afraid of performing in front of other people, and their egos are strong and eager.

It’s interesting, the Mansion is a Medicaid facility, most of the residents are well past 60, but they retain their humor and curiosity. They are extremely self-aware. It is easy to underestimate them.

Life on the edge does not allow for much self-delusion, these people know who they are and where they are. They have all seen a lot of life, and they all know where it ultimately goes.

But I am surprised – thrilled actually – to discover with these simple but very well crafted books –  that their ambition to create and their need for stimulation is very strong, even if submerged or set sometimes. I realize I have to go inside to get it, and these books are an effective tool.

These people are profoundly distracted with survival – they worry about money, health, soap, clothes, food and family.

What I am learning is that most of the residents are very eager to read. They feel they have lost their culture and most of the things they have loved. They have mostly given up on the idea that it is possible to get their culture back. It is difficult, I have seen, but it is possible. I’ve seen it happen several  times this week.

I’ll be able to support the cast, they can read from their scripts, they don’t need to memorize the words unless they wish, although I will certainly give them the opportunity to try. My goal with this work as in my therapy work with Red is a zero tolerance for mistakes.

Just like no dog can ever jump or growl or bit, nobody like me must ever make anyone feel bad, or ridiculed or pressured or exposed in any uncomfortable way.

More than anything, the hope is to re-discover the joy and healing power of reading. I  believe that is possible.

More than anything else, the seniors I am working with have lost confidence in their memory and reading skills. Building confidence is the first  step, it is important they succeed, and not be seen to fail, as many expect them to. These institutions are not generally created or funded or able to promote creativity, they are, by regulations and economics, focused on safety and comfort.

Those things are important, and nobody is giving them the money any time soon to do much more. Their funds and reimbursements are being slashed every day.

The casting challenge is whether or not to cast people with severe memory disorder. Perhaps someone – me or Maria – can be with them and help them read their lines if necessary. We’ll have to figure it out.

In any case, I am going full-speed ahead to produce a”Night Of Four Skits” at the Mansion, we’ll pick a date this week. I might want to hire a band to play some music and create a bit of a theatrical air. Maybe have some of the residents act as ushers and ticket takers.

I much appreciate the work and support of Susan Ostrowski and Dr. Peter Diamond, they are committed to using books to revive memory and strengthen voice in elder care facilities. Sacred work, they have donated several books (I’m going back tonight get the Robert  Frost  booklet) and they have communicated regularly with me.  I am grateful for their encouragement.

“We enjoy witnessing your inquisitive mind at work and your discoveries as they unfold,” Susan wrote me tonight. “We’re learning quite a bit from your writings.” That is kind and generous, but the actual truth is that it is me who is learning so much from their writings.

I think the genius of these books is their simplicity and relevance, they seem to speak in the same voice as the elderly, even those with memory issues. This simplicity is not something I would ever have thought of, it can sound juvenile, but it isn’t. And I love the idea of liberating reading from staff or people like me. In a sense, it reminds me of my parenting. The good parent is one who is no longer necessary at some point, not the one who clings and keeps everyone close.

Ultimately, they will not need to be read to.

They need to read to themselves and one another. I’m an enabler.

We’re not seeking miracles, nobody can really turn back the clock, especially not the health care industry, but we can slow it down a bit and return some pride and dignity and stimulation to the lives of people living in elder care.

Stay tuned, the “Night Of Four Skits”  are coming to town. I’ll get some posters printed and post them around town.

Army Of Good: Decorations and pennants and posters are welcome, so are small donations, this won’t cost much (except the band.) You can send decorations (date coming later) to the Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816. You can send donations to me at Post Office Box 205, Cambridge, N.Y., 12816 or via Paypal, [email protected].

If you wish to write to the Mansion residents, your letters and messages are precious to them: Same address as above, the residents are Winnie, Jean A., Ellen, Mary, Gerry, Sylvie, Jane, Diane, Alice, Jean G., Madeline, Joan, Allan, Bill, John K. Helen, Bob, Alanna, Barbara, Peggie, Dorothy, Tim, Debbie, Art, Guerda, Brenda, Wayne, Kenneth, Ruth.

Thanks much.

Studying and learning about megaesophagus, I realize that I have never felt quite so responsible for the life of a dog that  our family loves than I do for Gus. There was really nothing I could ultimately do for Orson, who was damaged beyond repair, or for Izzy and Rose, who were stricken by cancer, or for Lenore, in so much pain, or for Frieda, who simply grew old beyond probability.

Gus is different, he is not yet a year old, and there is so much mystery and alarm about this disease. Whenever I see Maria holding Gus and singing to him, I think, we have to figure this out.

The first thing I ever read about megaesophagus after I left the vet’s office and heard her diagnosis was this, from PetMD:

“In the past, a diagnosis of megaesophagus was usually a death sentence. Severe cases of the condition make it virtually impossible for a dog to hold down food and water. In health, the esophagus is a muscular tube that pushes what is swallowed into the stomach. A “megaesophagus” is like a deflated balloon. It passively collects food and water until it can take no more, at which point the dog regurgitates all that he has just swallowed.”

I held my breath after this, I was fairly certain Gus would die. He was regurgitating his food continuously, his ribs were sticking out in a frightening way. He just could not keep food down, as in the “severe” cases described.

The more I learned and heard about the disease, the more discouraged and confused I became.

I have worked hard and with determination to figure out if there is anything I can do to alter the course of this disease in Gus, I  know many dogs live with this disease a long time, in various states of illness.

But I could find no consistent or coherent medical treatment that made sense to me, or gave me much hope. This week, I feel differently.  I know the disease is up and down, and fluctuates wildly, I know there is no cure, but we have taken a number of steps that are changing my perspective in a more positive way, showing results,  and helping Gus in ways I thought may not be possible just a few weeks ago.

This has mostly been because of our experimentation and research into diet, into the digestive tract and how it works, and this is what i came to see as a creative challenge. Perhaps an arrogant idea to some: could I figure out a way to feed Gus that would minimize the disease and make it work for him, and for us?

I need to figure things out myself in a world where everyone is lining up sometimes to tell me what to do. This is my problem but I am learning to work around it.

This week, and with the help of our vet and other veterinary researchers, we all came up with a new dietary plan for Gus.

FIrst off, I don’t feed him twice a day, but four, even five times a day.

I use a long baby spoon to keep his portions small so they can be digested more easily, and hold them up so that Gus must stand on his hind legs to eat them. Gus has come to love this game – why not, and I don’t mind it either, it is fun and bonding.

He is actually jumping up and down while he eats, like any good circus clown,  replicating the effects of the Bailey Chair and other custom-build devices designed to help guide the food down through the esophagus. Gus is an easy going and adaptable dog, he goes with the flow, which makes this easier.

It is imperative with megaesophagus that the dog not lose weight, that is the gateway to infection and starvation with this disease. We switched his food immediately to Pro Plan EN gastroentric food. I put in a few drops of olive oil to lubricate the food. We supplemented his diet with Royal Canin high-calorie recovery food that vets use.

He never quite stopped regurgitating his food.

Gus experienced chronic regurgitation, vomiting and sharp weight loss, a month ago it looked very grim for him. But with the help of our vet and the good research published online, we kept experimenting.

The professional advice online was good, the amateur advice I got was not generally helpful. I’m sorry, but I just feel it’s dangerous to manage a disease like this from the ideas and experiences of strangers who are not trained or accountable, and who I don’t know.

If I had taken some of their advice, I would we would be in much deeper trouble than we are now. Gus might be dead.

I don’t say this to be combative, but as an advocate for dogs. They deserve the best advice available when it comes to their health. I also know myself, and I need to focus sharply and avoid distractions if I can do any good and retain all the information I need to retain.

The good wishes of people are always helpful, and mean a lot to me and Maria, and I thank you for them.

I saw that every time Gus ate something outside of the approved diet, he got seriously ill and spent the day discharging food – vomiting, regurgitation and diarrhea. I decided a good muzzle was essential to Gus’s treatment, and it was not simple to find a good muzzle.

I spent a lot of time searching for the right muzzle, and we got one, the OutFox brand, and it has helped greatly. Gus gets to go outside and run around with the others, but can no longer eat sheep and rabbit waste, they were nearly killing him. The texture of animal waste and dry foods and treats  made it perfect for getting stuck in the esophagus and blocking digestion.

No treats for Gus of any kind. I sometimes give him a crumb.

When we eliminated that eating problem, I re-examined the diet. I felt the EN food was not filling Gus up, it is a bland, low-calorie food. I wasn’t certain about the olive oil either, Gus would often spit up a yellow liquid that didn’t seem to be food.

A few weeks ago, and with the approval of my highly trained experts, we rebuilt Gus’s diet and digestive functions. He is getting motility medication three times a day to promote faster digestion. He is getting regular acupuncture treatments and Chinese herbal medications to go with the acupuncture and his food.

I am putting two tablespoons a day of plain yoghurt into his food for liquidity and to lubricate the food so it will move through the esophagus. This was my idea, the vets loved it. We switched the main food to Pro Plan turkey and sweet potato, a higher calorie, more filling food that might curb Gus’s voracious grazing inside and out, and keep  his weight up.

Every dog is different, what works for one may not work for the other, so experimenting is essential. It doesn’t matter what happened to somebody else’s dog, it matters what happens to Gus.

We are continuing to add the Royal Canin Recovery food into the mix: one-fourth Royal Canin, three-quarters Pro Plan turkey and potato.

I mix all of this up in the morning in one bowl and add several teaspoons of water. The food is soft but solid, and almost but not quite soup.

I feed him in very small amounts five or six times a day from the bowl. It takes me some time in the morning to prepare the food, but it is simple and fast the rest of the day. It is fortunate I work at home. I no longer take Gus to the Mansion or anywhere else for therapy work, I can’t risk him vomiting in those facilirties.

After each meal, Maria or I hold Gus upright in our laps for 10 or 15 minutes. Maria often sings to him, and sometimes plays healing chants on  her phone. I have to be  honest, I think this is helping, Gus loves being held, loves the music, and somehow, it seems to help him digest  his food quickly.

I can tell by the gulps and burbs.

I forgot to mention I give him a Pepcid tablet three times a day.

Over the past four days, Gus has not regurgitated once, nor has he vomited or spit up any liquid or bile, as was happening frequently. His stools are small, sometimes soft, but generally firm. He is flatulent, as is typical of the breed, but that is much preferable to spitting up.

We have not used up our Nature’s Miracle this week, or even used it at all, the first time in several months. This is different.

I am fully prepared for the disease to rear up at any time, that is what megaesophagus does, we are prepared for that.

But this turn seems different from the others. It is lasting longer and Gus seems solid – hungry, no burping, gulping or other signs of indigestion.

Since the very recent days when megaesophagus meant certain death, researchers seem to be focusing on diet as a control, or eventually a possible cure. Some people force feed their megaesophagus dogs with stomach feeding tubes. Maria and I are not comfortable with that options, we both believe it is not humane for the dogs, or for us. We never mean to keep Gus alive by any means at all costs.

There are boundaries and limits – time, money, work, emotion – so far, it is all in balance. Gus is a special dog, and he has certainly worked his way into our hearts and lives.He is part of our family.

But that doesn’t mean we can’t keep him alive and living a normal, happy life. We’ll just have to see. This week was just fine.

As I said up top, this feels different to me. Fingers crossed. More later.

 

 

“The spiritual life is first of all a life. It is not merely something to be known and studied, it is to be lived.” – Thomas Merton.

We have little control over our lives in a turbulent world, we have complete control of the way we view our lives. Spirituality is one of the greatest gifts to me, it has taken me out of my self-absorbed dramas and give me a way to look at the world.

It is in the silence of the world that I have come to find myself and understand the glory of being alive.

Yesterday, a friend called up to lament the raging storm. “I just wish this winter would end,” he said, “it is so cold and I am so sick of shoveling snow.” Not too many people love a snowstorm, I think, and it is my secret that I do.

I am coming to see that this is one of the reasons I sometimes struggle so much with the torrent of voices on the Internet, it drowns out the silence in my head at times. And also brings me gifts, as it did today. Some people hear voices in their head, I hear silence in my head, and it is always disturbing to people.

I had been commiserating with people about the coming storm all day Tuesday, wherever I went. People warned me to be safe, predicted great fury and trouble, and pled with me to stay warm and keep inside. My utility send a message urging older men with heart disease to say indoors.

I said nothing to my friend, and wished him luck in the storm, and then I remembered our donkeys, who can hear the snow coming and who take themselves into our sheltered barn and wait for it, as in prayer.

I went out to the barn, and the donkeys, as always were dry and silent, they had been waiting for the storm and were dry and at peace when it came. They heard it hours earlier. I wrote about this, and this morning, a message from Mary Elaine Kiener who introduced me to a song her church choir sang this past Sunday morning, that “continues to ring in my heart.”

It’s called “In The Silence,” and you can hear it on youtube, it was written by Jacob Narverud. Living in the country, where I see the storm clouds rush over the bright stars, I have always gone outside to pray to the storm, and welcome the silence it brings, there is no silence quite like it.

Storms can trouble people, and cause hardship, but they bring a silence I can only describe as sacred. It rang in my heart when I read it, and I’m happy to pass it along.

 

“Give Me

Give me this life.

Give me this life, too.

That I may hear you,

blessed world.

That I may hear your secret life.

That I may breathe the unknown air.

That I may hear this snow as it nears.

That I may hear the snow as it kisses the earth.

And find peace in the silence of this world.”

“In The Silence, by Jacob Narverud.

Thanks for sending me this poem, Mary. In the next storm, I will take it out to the donkeys and read it to them. And sing it to the storm.

“When society is made up of men who know no interior solitude it can no longer be held together by love; and consequently it is held together by a violent and abusive authority. But when men are violently deprived of the solitude and freedom which are their due, then society in which they live becomes putrid, it festers with servility, resentment and hate.”

Thomas Merton, Thoughts in Solitude.

Poor Fate, she always wants to see everything that is happening, and be part of anything that suggests work. In the mornings, she holes up with Maria in the Schoolhouse Studio. I went out this morning to put some water in the animals tank, and I heard her howl in frustration.

She looked forlornly out of the window to see what was happening and hope to come along. I took her photo, of course.