Day: February 6, 2018

Joan can rarely speak in a full sentence,  yet I hear her calling to me very clearly. She is searching for her memory, her identity, her story. She is crying out to me, to others, to the world to help her remember who she is and where she came from.

It is a holy task to me, and I will very humbly try to answer he call. I believe I now have a few tools to work with and build on. I will never forget the pride and joy in her face when she answered all those questions for me in the Mansion Activity Room. We are now reading with one another, next she will read those questions to me.

I got a powerful and important letter today from Dr. Peter Dixon, one of the co-authors of the reading and memory handbooks I have  been using at the Mansion to help residents like my friend Joan and others revive their memory and help elderly people with memory loss to find a way to read again.

Readers of the blog have been forwarding my pieces on their reading books to him and his partner, Susan Ostrowski of reading2connect,  and they, in turn, have been encouraging me. I am a layman, of course in this work, I didn’t think to study the program or take courses in how to use it, I just saw it and felt it and went to work with it.

“I was excited to hear you found our books, recognized their potential and tried them at the Mansion (blog reader told me about them in an e-mail). To do that independently, without our usual coaching and encouragement, is testimony to the power of the books and of reading at this age.”

I appreciate those words, I should also say it is a testament to the curious way I have always learned, which is on my own and by myself, I am almost psychically unable to learn through coaching and teaching, and I say that with no pride, I learn through a cloud of disabilities and impairments.

“We are confident about the capacity of our books and your experiences reinforce that. Whether they are read to older individuals in similar settings or they read them to each other in a group, accessible books engage these people.”

Over the years, he wrote, he and Ostrowski were surprised to learn that once a small group starts reading independently, they’re better off without staff around. The group takes ownership of the activity. Interactions become more spontaneous and genuine. They interrupt each other, conversations begin, memories pour out and dialogue takes place.

Not having an outside leader or monitor, he writes, promotes independence and the time and space to express themselves as peers, without the fear of failing or looking foolish.

“We look upon this as empowerment to be independent, uncommon in the settings of assisted care. The primary purpose of the books, he wrote, is to enrich the lives of elderly people.

It is an exciting undertaking for me. The lives of senior citizens living in assisted care facilities desperately needs to be enriched. The administrators at the Mansion have been nothing but supportive of the work I am doing, even as we all recognize that the administrative, bureaucratic, regulatory,  financial, health, behavioral and other burdens they face make it extremely difficult for them to stand back and initiate complex programs by themselves.

So far, I have not sensed a willingness of the residents to read without me or by themselves. I think they are afraid of failing or being frustrated once again. No one likes to be reminded that they can no longer read comfortably or are losing their memory. I believe many see reading as something lost to them, they are afraid to try it again and face disappointment and loss.

Rather than try to read, they often tell me why they can’t read any longer.

My idea is to take it one resident at a time, working with people like Joan and Diane and seeing if they can recover some of their confidence in reading and memory, and feel successful, rather than frustrated or handicapped. The system by its very nature breeds dependence and struggles to find stimulation.

I think the Mansion is almost heroic in its efforts to find and schedule activities every day for the residents. Yet working to revive memory and something as personal and reading is very individual, and personal, and labor intensive. I am a trained literacy volunteer and also an author, so the power of reading is very important to me, and I am deeply aware of it.

My reading with Joan was the product of many hours of our working together – writing poems, painting, reading aloud. The people on the Mansion staff are busy every minute, and then some. No federal or regulatory agency will assist them in a project like this, sadly, or pay for staff to do it.

I have also and over the past year established trust and even love with some of the residents, Joan in particular (and Connie and others). We have a foundation to work with, Joan trusts me not to hurt her or get frustrated with her, or brand her a failure in any way. She doesn’t know who I am but she seems to know what I am, and that is an extraordinary thing.

I will follow Dr.Dixon’s ambitions for his books – they are his books, after all – and see if I can get this reading idea started and slowly turn it over to the residents, who so far, have shown resistance to taking it on as group.

Dr. Nixon acknowledged in his letter that the the institutions who house and care for the elderly have not yet shown much interest in his concept. That is not a surprise to me, I see how overwhelmed they are with work. His goal it bypass them and get the information about his books out into the world.

“We would love to have  you join us in this effort,” he wrote. “Clearly your experience as a writer and your sensitivity to this topic would be helpful explaining the joy and power of reading in this demographic group.”

I wrote back to Dr. Dixon and I told him I am not a joiner, my plate is pretty full. But I would be happy to join him and Ms. Ostrowski in this work, it is important and urgent and desperately needed. This, I think, is a movement I could perhaps join.

I was thrilled and humbled by my work with Joan the other day. I hope I can fight my way through tomorrow’s snowstorm and continue it. If not, I ‘ll be there on Friday.

“And therein lies the whole of man’s plight. Human time does not turn in a circle; it runs ahead in a straight line…Happiness is the longing for repetition.” – Milan Kundera, The Unbearable Lightness Of Being.

If you look at this photo, you will see Maria lost in thought, dazed by an illness, starting at her fish Frida. Maria got sick last night – it looks like food poisoning – and was weaker and paler than I  have yet seen her. She didn’t even protest when I went out to take care of the animals and the dogs.

That’s a first. Seeing her across that space, an image in the glass, I felt a deep and rich sorrow that was almost overwhelming to me. It is easier to hate than to love, isn’t it? Doesn’t illness call up compassion in a powerful way?

There was a feeling of melancholy in our usually cheerful farmhouse, sickness can bring us to that.

Maria was awfully sick today, she couldn’t eat a thing, the color was drained from her face, she could hardly get up.

She spent the day resting, reading, sleeping. She finally took some food at dinner, and I fed her ginger tea all day and generally ignored the advice of friends who suggested various exotic recipes involving rice, oatmeal or herbs. They don’t know Maria, she is a Willa Cather girl, she toughs it out without medicine, doctors, or home remedies.

I feel especially emotional and vulnerable when someone I love is sick and I am helpless to do anything about it, other than to watch and boil water. Sometimes I think that love is the longing for the half of ourselves we lost or never had.

It is fashionable these days to be cynical and cruel and angry, but I honestly thing there is nothing harder or sometimes sadder than compassion, and nothing cheaper than hatred.

My own pain and occasional sickness is nothing to the pain and sadness I feel when with someone or for someone, that pain, wrote Milan Kundera in “The Unbearable Lightness Of Being,” is “intensified by the imagination and prolonged by a hundred echoes.”

Cruelty and anger are of the self, they are the most narcissistic and self-centered of emotions. And the cheapest.  Compassion asks us to feel the pain, sickness and suffering of others and thus becomes a heavy burden that can pull down the strongest soul.

Plato wrote in his Symposium that human beings were hermaphrodites until God split them in two, and now all the halves wander the world seeking one another. Love is the longing for the half or ourselves we have lost.

Watching Maria, this vibrant and intensely energetic and creative person, I felt weak and  vulnerable.

Watching her through this looking-glass, I realized that I want nothing that I don’t already have, for the first time in my life. I think it is true that a person who longs to leave the place where he lives is an unhappy person. There is no perfect life, only life.

Tomorrow, a big storm coming, it will last all day Wednesday and well in the night and next morning.

I am the Hunter-Gatherer here. Even when she is not sick, Maria would never notice an onrushing storm, or care a whig about it. If necessary, she would eat dry cereal for a few days or munch on so thawed out bread with cheese, which is all she ate when I first met her.

I rushed out today and stocked up – two frozen pizzas from the Round House, cafe, milk, a chocolate fudge brownie for Maria, some anti-creosote powder for the wood stoves, some fresh fruit and vegetables, some freshly sliced American cheese and a bag of wheat pretzels for me.I also got two new books, the new book of essays by Sadie Smith, “Feel Free,” for Maria, and the new non-fiction book about immigrants for me by Dave Eggers  – “The Monk Of Mokta,” will sit with me by the fire when the snow is shoveled and the animals fed, and the toes and fingers need to thaw.

In our cozy farmhouse in a raging storm, I will be dreaming of compassion, sipping hot chocolate, eating our gourmet pizza,  taking photos of the snow, blogging, and giving thanks for it, all, especially for love.

Love is the sister of compassion, and compassion is the mother of feelings.

“When the heart speaks, the mind finds it indecent to object.” – Milan Kundera.

We have found the right muzzle for Gus, it enables him to torture Fate while she is out in the pasture and he doesn’t even try to eat anything while it is on his head.  He is perfectly acclimated to it. The muzzle was made for hunting dogs, the kinds of dogs who eat foxtails.  It’s called an OutFoxField Guard.

But it works perfectly for Gus (it cost $46) and unlike the first fix muzzles we got, it is soft, offers freedom and fastens easily and securely on Gus’s head. I have to say I was disappointed in most of the muzzles we got, they were too hard, too lose, or fit poorly.

I continue to experiment with diet and moisture in Gus’s food, to help the food pass through the esophagus and down into the digestive tract. I put a spoonful of pumpkin in his food for fiber, and a tablespoon of plain yoghurt for mobility, to help the food move easily through the esophagus.

I have a good feeling about the yoghurt.

I’ve also stopped adding some olive oil to his food, I think it was irritating his throat and esophagus.

Gus had a very difficult day Saturday, he spit up or regurgitated nearly a dozen times. Something was very wrong and we don’t really know what it is. Some hard pebbles came up in his vomit, he must have gotten into anything.

This is a dog who will eat absolutely anything and is supposed to eat absolutely nothing apart from his prescribed food. He vomited once yesterday, spit up once today in a small amount. Otherwise, we are having a good couple of days. Gus does not seem to notice his muzzle and gets to resume his active life as a far dog. In the morning, he doesn’t even look when the border collies rush out to work.

He is, in many ways, an indoor dog, he is very happy to sit by the fire and chew on his antler bones, bones that will not chip or break off. He is lively and alert and affectionate, his weight is holding steady so far as we know.

It is odd to see him walking around in that mask, but it doesn’t bother him, the sheep or the dogs and donkeys. Fingers crossed.

I just bought something for the RISSE soccer team. Because it’s a surprise, I can’t put it up on the blog. And because I can’t put it up on the blog, I will pay for it myself because it seems wrong to accept donations if people don’t know what it’s for.

And frankly, it’s a good chunk of money – not insanely wild, but still..I have been watching these kids bravely go up against the super-financed, high-powered coached, incredibly well dressed and supplied soccer teams of the suburbs.

Their opponents often have the most expensive shoes, uniforms, headgear and equipment, several coaches, scores of parents and supporters, plenty of players to rest and switch.

The refugee soccer team has none of those things, except the nice new uniforms purchased by the Army Of Good.

So I got something that every kid on the team can use, it will give them pride, dignity and utility. It will make them feel tall and strong. I actually think the other teams will want one, and probably rush out to get one.

There are 20 kids on the soccer team now, each kid will get one with their own name put right on it. I can’t say any more without giving it away. And as I said, I’ll pay for this one, it just feels like something I ought to do.

My surprise is coming on Valentine’s Day, Ali and I have been plotting it for weeks, and we hope to present the gifts to the kids at their next tournament, February 21st near Albany. The team finished second in their last tournament and are going for victory this time.

I am excited about, I did gulp a bit at the price tag, but as Ali said, “we’re both crazy, right?” Right.  It isn’t insanely expensive, just expensive by the standards of me and the soccer team. The other teams wouldn’t blink at it.

If anyone wants to donate to our support for the soccer team, there are many things they need beyond what I got. You can donate to Soccer Team, P.O. Box 205 Cambridge, N.Y., 12816, or via Paypal, [email protected]

Sometimes you just got to take the leap.

Joan, standing in front of the fan, which she loves to do.

Yesterday, I had one of my most powerful and exciting experiences at the Mansion, a small miracle, it seemed to me.

As some of you know, I’ve begun a one-on-one reading program at the Mansion designed to revive memory and strengthen voice, it’s called reading2connect, and it was designed by two researchers – Susan Ostrowski and Dr. Peter Dixon – who believe their books can help elderly people with memory loss read again and reclaim some of their memory.

I have been working closely with the very creative and whimsical Joan at the Mansion – she has severe memory loss – to write poems, paint and seek out her memories. Researchers believe memory is never lost, it is just not always possible for the brain to find it.

The books are not presented as miracle cures, but they produced remarkable and very poignant results with Joan in just one day. “We create books,” say the publishers, “for seniors with memory challenges. Our  books are highly readable, yet retain the integrity of adult literature.”

They speak the truth, I think.

Joan is a sweet and loving spirit, but most days, she can’t sustain a conversation for more than a few seconds. She always greets me with a hug and a kiss on the cheek and thanks me for coming to see her.

She knows me, yet does not know who I am or what my name is. She loves dogs, but cannot remember Red’s name or whose dog he is. Sometimes she asks me me if I have come to the Mansion to sell him. Sometimes, she stares out and the snow and tells me the flowers of Spring that she is seeing.

She does not, to my knowledge, know anyone’s name at the Mansion, she is always in motion, moving from one place to another, she believes she is going home every morning, and then forgets about home. Her room is bare, because she packs everything she owns each night, to prepare to go home.

She is one of the warmest and most loving people I know. Yesterday, I sat down with Joan and one of the reading2connect workshop activities books – the “Read-Aloud Word Games.” I start a well-known phrase and the listener finishes it, as “Practice Makes ____” or “Two Wrongs Don’t Make A ____.”

Joan can rarely finish any sentence, but she was eager to sit with me and work with the book, and she quickly grasped the idea and was eager to try reading with me. She shocked me by getting all but two of the workshop answers right, and when we went back over the book again, she got them all right. I could see her confidence rise, and I could also see that her memory was very much there, she just had trouble accessing it.

The structure of the book and the interaction with me gave her a structure she could work with and she was proud and delighted that she recalled so many answers. I messed up more than she did.

I think the video shows Joan finding her memory, and also her pride and delight at succeeding. It is a very painful thing to lose memory, and a miracle when any of it is recovered. I apologize for my sunglasses in the video, I had laser eye surgery in the a.m. and couldn’t see without them.

I encouraged her throughout, occasionally touching her arm. I deliberately failed to answer some questions, so she would feel equal to me, sometimes superior by saving the day. If she struggled, I stepped in quickly to offer a clue or even an answer, I did not want her feeling as if she failed, it wasn’t a school test. I wanted her to succeed right away, and she did.

 

I ordered several additional activity books last night from reading2connect and I’ll return to the Mansion this afternoon. I had some similar success with Diane, who got most of the answers right also but was distracted by Red.

I should be careful to say that no one, least of all me, is suggesting memory loss can be miraculously recovered, and the books do not promise that. But I have long believed it is possible to revive  memory and exercise it in ways can bring the elderly back into reading and access more of their memory.

As I understand it, that is the premise and purpose of these books.

Memories are all we are, in some  ways, and the loss of memory is the eradication of the soul, humiliating and profoundly discouraging. Joan was as happy and focused after our work as I have ever seen her, she was pleased with herself and proud, rather than frustrated and lost.

It feels like reaching into burnish the soul, and bring it into the light a bit. You can see the video and watch the progress Joan and I made yesterday, the first time we worked together to try to restore her reading. This afternoon, I’m going to ask  her to read from the “Birds” book, she has not been able to read for some time.

I am excited beyond words by this work – several other residents have asked to sign up –  and plan to order even more books from reading2connect. I will share this work with you. So far, the books have cost about $200.

If you wish to write Joan, me and members of the staff will read them to her. I also hope to bring this program to Bill, who has been struggling to read again after his stroke, and Diane and Sylvie.

If you wish to write to any of the Mansion residents, you can send your letters and photos and messages c/o The Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816.

The names of the residents who wish to receive messages are Ruth, Kenneth, Wayne, Brenda, Guerda, Art, Debbie, Tim, Dorothy, Peggie, Barbara, Alanna, Bob, Helen, John K., Bill, Allan, Joan, Madeline, Jean, Alice, Diane, Jane, Sylvie, Gerry, Mary, Ellen, Jean, Winnie.

Thanks for your support.  If you wish to contribute to the Mansion work, you can send a donation to The Mansion Fund, c/o Jon Katz, 205 State Route 22, Cambridge, N.Y., 12816, or via Paypal, [email protected]

This feels quite wonderful to me, I’m very excited about it.