Bedlam Farm Blog Journal by Jon Katz

I’ve given my fund raising for the Gus Fund some rest over the past few weeks.

I hate to keep asking people for money, and I was also distracted by some personal obligations. I always try to give the Army Of Good a rest,  this is not a wealthy army, it consists of good people who share small amounts of money.

But if I don’t ask for help, then we can’t help anyone. That’s just the hard reality of it.

We have done a staggering amount of good since we started work in 216, it would take me all day to list everything. The Gus Fund supports my work with the Mansion residents and the refugees and immigrants living in New York State and struggling to survive.

We also support and sponsor the Albany Warriors, that wonderful group of young refugee men (and some women) who  play soccer in the Albany area and also build character and community. This money is very well spent, every member of the team is on their school Honor Roll, that is a profound achievement for them, and for Ali.

The fund is very low right now, $750 and I’d like to get it up to $2,000 or $3,000 again.  My philosophy is to get rid of the money  as quickly as it comes in, it should be going to good use, not sitting in its own special bank account.

I spent more than $1,000 getting Lisa and her two sons established (they have new clothes and toys)  and also helping Hawah and also helped  Sifa get to a safe and clean and decent apartment. I had to give Hawah’s landlord nearly $1,000 this week to secure her new apartment, the county welfare department hasn’t sent him a check yet.

The landlord promised me that that money will come back to me. He is a good and  honorable man, he has helped us more than once.

I promised to back her up, and I will keep my promise.

I also learned that one of the refugees that I helped – I gave her money for a down payment on an apartment – did not use the money to pay her landlord, but spent it instead for personal reasons. She came back to ask us for more, we said no.

I don’t intend to try to get the money back, I’m sure she doesn’t  have it, but it was disheartening to me, the first time that has happened.

It hurt the heart, our fund will be fine. I suppose this is inevitable.

We screen the people we are helping carefully. I’ve never had anyone use the money for anything other than what they asked for and needed. I also bought two more air conditioners for the Mansion residents this month, they suffered greatly in the heat wave.

Everyone who needs an air conditioner has one.

The Army Of Good has been more than  generous. My idea is large numbers of people sending small amounts of money. You all know precisely where it goes, I document everything I do in words and pictures.

When I get the funds, I use them and then pause and then ask for more help, and then use the money. I believe this is working well. We don’t work miracles, we don’t spend lots of money, we don’t take over lives.

We just offer a hand to the poor, the needy and the vulnerable.  Get them to some stability, give them hope and promise.

It was wonderful to help Said, the Iraqi gentlemen who had lost everything after the war and was nearly homeless. He loves his new apartment, his TV with Arabic channels,  has some clothes, loves his new cellphone. He has a part-time job, he is taking good care of himself, making friends, living an independent and safe life.

We are giving the soccer team some fun and healthy activities this summer – museums, animal parks, we would like to send them on a one day trip to New York City to ride a bus around town and have lunch. I would also like to get them to the Great   Adventure Amusement and Water Park in Lake George.

You did that for him. We are keeping good alive.

I am sorry to say there are not a lot of people out there doing this for the elderly and the refugees, you are quite special and you matter.

We don’t do big things, we commit small acts of great kindness. The money goes a long way, it changes lives.

The soccer team will need to pay for its new uniforms shortly and I am eager to continue to support refugees who need some short-term assistance in getting their feet on the ground, in getting to the open field that is America, or should be.

The Mansion residents all have summer clothes, and air conditioners for their hot rooms if needed or wanted.

The Mansion also needs a new wheelchair scale, the old one is too small and is falling apart, and that will cost close to $400.  This is important, the scale is the only way the residents can be weighed.

Some of the residents need underwear and shoes. I got a bunch of summer pajamas for them.

I want to shore up some summer activities for the soccer team when summer school gets out.

So this is the pitch I have been avoiding. I’d like your help in building the fund up for the summer.

Small donations are welcome, so are bigger ones. When I get some money, I stop asking for more until it runs out. So far, the Army Of Good has not failed to help.

If you can or wish, please send your contributions to “The Gus Fund, c/o Jon Katz, P.O. Box 205, Cambridge, N.Y., 12816, or via Paypal, [email protected]. And thank you.

Well, here it is, the final New Bedlam Farm Banner, designed by the wonderfully gift artist and designer Abrah Griggs. We ended up with a belly dancing sheep, a bookish hen, and a big red dog (sound familiar?)

Abrah perfectly captured the spirit and feeling of my blog, which I started in 2007, and have loved working on every day since. The blog has grown and evolved, I hope I sometimes make people think, but I never want to take myself too seriously, even when I am.

My blog is being re-designed to keep  up with the new platforms on which people are reading, I think you will find accessing the blog easier, prettier and quicker. This is expensive – about $4,000, but necessary.

I intend to be relevant and accessible. The blog is the centerpiece of my creative life, and I am grateful to the many people who have supported it and put up with me.

I thank the many people who chimed in, who needled me into putting a dog about there, who blasted me for leaving out the donkey and who cheered on Abrah and the drift of the design.

I am so happy with it, it is the perfect expression of the blog and what I wish it to be.

I am getting smarter in life, I married the right woman, I chose the right designer. Perhaps there is hope for me.

The blog  re-design will be up in a couple of months. Maria is also working on hers.

Carol Gulley is a life-long dairy farmer, not once in her life did she expect to be in the situation she is in now, a full-time caregiver to her strong and powerful husband – she calls him My Farmer – who is dying from terminal and untreatable brain cancer.

A few weeks ago, he was pulling calves out of enormous cows and milking twice a day. Today, he can no longer sit up by himself. Carol is tough and smart, but her face reveals the pain and turmoil inside. She is a friend of mine, and I worry about the burden she is carrying.

The two are famously in love, and have been married for more than 40 years, they shared every hard farmer’s day working side-by-side in cold, heat, snow and rain for nearly half a century.

Yesterday, when she came to check on him, Ed told her to go away and just let him die. This morning, he pushed her away. An hour later, he was sketching and asking for food.

Ed’s brain cancer is changing his body and his mind. He has sudden and abrupt emotional shifts, sometimes sleeping, sometimes crying, sometimes lashing out in frustration over his inability to carry out even the simplest tasks of life – sitting up, standing up, going to the bathroom, getting dressed, staying awake.

Ed is sometimes recognizable as himself, sometimes not, and most of the time, he is not awake or fully aware of what is happening around him.

Carol has a loving and devoted family around her – four children and many grandchildren – they all want to help and are helping. She is by no means alone.

Yet she is very much alone, as along as she has ever been in her life. As alone as only caregivers can be.

Monday afternoon, I went to sit with Ed, as I do most afternoons, he is no longer able to speak to me much, I just sit quietly and read and once in a while he opens his eyes, says hello, and then drifts back to sleep. Sometimes he recognizes me, sometimes not, sometimes we can talk, sometimes not. We can no longer do our videos or tell jokes or philosophize with one another.

We are both story-tellers and kidders, there is none of that, although I did read quotations from St. Francis to Ed while he slept.

Today, while he was sleeping, Carol invited me to come into the kitchen and we talked: about listening, about respecting the wishes of the dying, about exhaustion, about understanding.

She knows he is not himself when he tells her to get away, but it still hurts, and she still struggles with a life of never-ending caregiving work – Ed can no longer care for himself – and exhaustion, it is hard to find even a few minutes to sleep.

Caregivers no there is no more important or thankless or unending or draining work than caregiving.

It was a good talk, we talked about knowing when the time comes to let Ed go, and  understanding when that moment is.

Carol is beginning to reach out to hospice nurses and social workers and her family doctor and online friends for guidance and support. She now wants to know what to expect and how to handle it.  She is learning by the day.

She is also faithfully chronicling her efforts to come to terms with this new reality on her and Ed’s blog, the Bejosh Farm Journal. She has found her voice there.

She knows that barring something unexpected, the worst is yet to come. She knows Ed loves her and she knows he hates to be so dependent on her or anyone else. She wishes she could ease his suffering, but she can’t.

I’ve met a lot of caregivers in my therapy work, they touched my heart, sometimes even more than the people they care for. They are the unsung heroes of our barbaric country, which so determinedly resists helping to support care for the sick and the dying, or paying for it.

A caregiver is  an unpaid and usually untrained person – a spouse, partner, family member, friend or neighbor – involved in assisting sick or aging people with the routines of daily living and/or medical tasks and care.

Carol was stunned to learn when I told her that in the last 12 months  approximately 43.5 million caregivers have provided unpaid care to an adult or child.

About 34.2 million Americans have provided unpaid care to an adult age 50 or older in the last year. Approximately 39.8 million caregivers provide care to adults 18 and over with a disability or illness or 16.6 per cent of all Americans.

About 15.7 million adult caregivers care for someone suffering from Alzheimer’s disease or other dementia.

The vast majority of these people are much like Carol, they are suddenly thrust in a painful, frightening, and extraordinarily difficult and labor intensive role that will consume their lives for days or weeks or months or even years. Caregiving was not their work or ambition, it is a literal giving of the self to another, really the work of Mother Theresa or Jesus or St. Francis more than average Americans.

Unlike other civilized nations, the United States provides little in the way of financial or other support for these caregivers, who struggle to help their parents or lovers or spouses, or in many cases, their children navigate illness, impairment, aging or death.

They work to ease their pain, keep them at home, make them comfortable. Unless they are wealthy, they know they can provide better and more humane and immediate support than almost any other institution.

They willingly give up their lives for someone they love, once you are in  you are in deep.

The trained and paid nurses and health care workers will testify to how difficult and exhausting this work is when you are trained and paid for it. Carol is learning how overwhelming this work is when it becomes your life, usually every hour of every day. Life is upended, so is sleep and work and any kind of normality, rest or recreation.

One minute Carol is helping Ed to sit up, another giving him medicine, another, helping him use the toilet, another bringing him a drink, or pencils to draw with, or food, or turning on the radio, or turning it off, or greeting a visitor, or trying to clean the house and do the dishes and go shopping, and perform diabetic blood tests, or count pills, or buy pills, or change sheets or clothes or do laundry and in between,  trying to move a large and powerful man who cannot move himself or talking to doctors or pharmacists or trying to pay bills.

Her family is present, they help, they are devoted, but they have their own lives and jobs and homes and kids, they cannot be there all of the time.

Carol doesn’t want them to be there all the time, neither does Ed. They want their children to have their own lives.

There is no softening or evading it, caring for the partner she has loved while he prepares to leave this world falls on Carol. She is the caregiver. She  sees it as her responsibility, and I have to agree. It is. Nurses come and go, so do aides and social workers. She is always there. She is the one he knows and trusts, even to shout at.

And on top of this Carol knows she will soon have to decide how to let Ed go and when to let him go, how to respect his wishes and also take care of him, what the lines are between responsibility and surrender, how to balance the instincts of love with the instincts of caregiving.

I am committed to coming every day. He is my friend, so is she. You do so much, Carol says, but I know I do nothing really, but bring some corn and berries. I am not a caregiver.

Now, it seems, my role is to sit silently with Ed while reading a book. When he opens his eyes, I wave. Often, Maria comes with me, she and Carol are close friends and she is a good listener.

This is what we can do, this is all we can do.

My heart often goes out to the caregivers all across America who step in where nobody else wants to go. Where the government refuses to go.

One day, I dream we may advance enough as a civilization to spend half as much on caregiving to sick and aging Americans as we do on new tanks and submarines.

Caregivers are the barrier between peace of mind and nightmares. They help people heal and die good deaths.

It seems I will not live to see the day when we as a society and nation help the caregivers in a meaningful way but i know the day will come. One day the caregivers will stick their heads up from their grinding work and talk to one another, perhaps online. Maybe they will all go to vote for someone with a heart.

Forty-three point five million people can change the world in a hurry.

The first of the five sets of tablecloths the Army Of Good purchased for the Mansion from their Wish List arrived this week, and the residents were grateful and excited, the old ones had been there for a long time and were getting rattu and boring.

There are two new items on the new Mansion Amazon Wish List, one for some Japanese origami paper for the residents to make during activity hours, and the other is the final set of tablecloths, a new and bright pattern.

The Mansion staff has been aching for months to get enough tablecloths to mix them up and reflect seasons and holidays. The residents spend a lot of time in the dining room and the colors they see matter.

We already bought six  sets, the final one, the Butterfly Meadow Blue, costs $21.00. The Japanese Orgami paper costs $14.95. Check out the Wish List here. Just two items left.

Note for art people: The first annual Mansion Art Show will be held on Thursday, August 23rd from 6-7 p.m. at the Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816.

The Mansion is looking for volunteers to come and host an art class, or paint in front of the residents, or just to bring their art to put up in the Art Show.

If you are interested, you can e-mail Julia at [email protected]. This one will be fun.

This idea grew out of the art work we did last year, but this year, the art show is being opened up to a wider audience. The public is invited. If you live far a way, please send a piece of art, if  you are in the area, come by to host a class or just to hang up some of your art.

This is a celebration of creativity.

Today Maria went to the Mansion to teach her monthly art class, and I went visiting with the residents with Red. It was another brutishly hot day and I thought the residents might need some cheering up.

Come and take a look.