Day: July 23, 2018

Carol Gulley is a friend of mine, and there are two things about her that never change and will not, I think, ever change. One is that she will never ask for help. She could be hanging off the edge of a sinking ocean liner and she would not call out for help or feel she deserves any help ahead of anyone else on the boat.

You can ask Carol a million times if you can help and she will always shrug and look puzzled and say, “no, I’m fine.” So what you do is simply help and never ask.

I asked her for days if it would help if I came by every afternoon, and she said Gosh no, that would be asking too much.

So I just come by every afternoon, and she is clearly grateful for the rest and chance to do her chores.

The other thing that never changes is that when you ask her how she is, she is always quick to give the same answer: “fine. How are  you?” Carol has a great heart but a will of granite. She does not bend or break, and her answer does not necessarily have any even slight bearing on the truth.

You have to remember that i met Carol in cardiac rehab and we open heart surgery people know each other in a particular way. We have an aversion to bullshit.

But  still….She is in an awful testing time, in a lapse she will call it a “terrible time.”

Today, the results of her MRI came in, and she learned she has torn ligaments in her left leg.

She was limping so badly today I did not think she would be able to stand up. She is a farm girl, though, of course she was able to stand up.

Her face is lined with sadness and exhaustion and now, pain, when she least needed it in her whole life. Carol twisted her leg on ice during the winter and like any farm girl, soldiered on. It has come back to haunt her, she has been hobbling the last two weeks and finally got to a doctor. She will see a orthopedist later this week to see if she needs an operation.

Torn ligaments very often do require surgery.

Carol is already bearing a heavy load, as most of you know.

It just got a lot heavier. It is painful to see her limp so badly.

Carol never sleeps more than an hour or two a night,  especially now that the nights are fearful and painful for Ed.

She shuffles back  and forth from Ed’s bed to the rest of the house all day and night. She gives Ed his medications, adjusts the sheets, wipes his brow, moves the sheets, and feeds him his chocolate ice cream. She brings him water, takes his blood sugar, talks to him, kisses him, listens to him in the increasingly rare moments when he can speak.

Her leg has added an enormous complication for her, I imagine she will do almost anything imaginable to avoid having surgery now, even if she can barely walk.

She will let her children help her, but I do not think she will turn Ed’s care over to anyone for more than a few minutes.

She hasn’t yet. She has not yet written a word on her blog about the pain she is in.

Today, I came in the afternoon to sit with Ed and bring Carol and her family sweet corn right out of the field, big fat sweet peaches from Pennsylvania, green beans and a big and beautiful pot of zinnias – the Gulley farmhouse could use a bit of color, I think.

Carol came to sit with me (and Ed,) and I asked if she would she like to sleep, and she said, no, she was fine, and so I said, Carol go and lie down and sleep a bit.

And she said thanks, don’t mind if I do, and lay down in the lift chair. Ophelia popped up to sit with her, and Carol was out in an instant.

It was a lovely 10 minutes, I didn’t dare move for fear of waking her up.

Then, Ed sighed and rolled over a bit, and Carol was wide awake, she got up to shift the blankets on him and ask if he needed anything. Ed looked at me and I said hello, and he said hello, and then fell back into the deep sleep he is now in for almost all of the day.

Carol did not go back to sleep.

Each day Ed looks thinner and weaker and almost all of his spirit and drive is gone. Every day, Carol looks more worn and sadder, the two converging steadily towards one another in a sad but inevitable place.

I am not worried about Ed now, he is, in most ways, already gone, there is not much more to do or say. My wish for him is a swift and peaceful end. He is in more pain now than before as the cancer moves through is body and takes it over. Somebody said once this kind of cancer is like an octopus, it simply envelopes a person.

But I am worried about Carol. Today, she told me the hospice aide, a temp filling in for their  regular aide,  got up and left the room when Ed started to cry out in pain. “I can’t handle this,” she said, and went into the kitchen.

Carol was stunned, and angry. I have never seen a hospice aid do that, and I hope Carol never sees it again. I Carol can handle it, she certainly can.

When it was time for me to go home, I stood up and said “Carol I have to go now,” and she said, “of course, you are doing too much.” You should talk, I thought but I said nothing but “I’ll see you tomorrow.”

I do notice all of the corn I bring is gone by the next day, and so are the peaches and blueberries. That is good to know. I have this feeling that fresh fruit will be healing for everyone, and don’t ask me why.

So this is the testing time, and the hard and lonely and grounding time for Carol. She is, of course, surrounded by a very loving and protective family, they are always close by. It is not a question of whether she can survive, but how she will endure.

At first, as awful as it sounds, there is much excitement, adrenaline, energy. it gets old very quickly.

For all the people in Ed’s life, this really comes down to a love story. Carol and Ed.

It is  something so personal and intense that it is sometimes unbearable to look at it. And it is relentless and draining.

I’ve been marking passages in a book for Carol, today’s was “Cry Inward,” a passage from Henry Nouwen’s book “The Inner Voice of Love.” I’ve been reading quotations from the book to Ed.

I thought of her while reading it right next to her as she slept.

“You have to move gradually from crying outward – crying out for people who you think can fulfill your needs – to crying inward to the place where you can let  yourself be held and carried by God, who has become incarnate in the humanity of those who love you…”

Carol is crying inward, every day, I can see it and I can feel it. And I cannot and should not try to do much about it.

I wish her strength and one day, peace.

We have been experiencing a few days of wind, showers and thunderstorms. We need the rain and have no complaints to make about it. One leaf came all the way across the yard and into our new blue birdbath, and gave me the gift of some Blue Birdbath Art.

Beauty is where you find it.

There were many voices in my life urging me to ignore the inner voice, to be cautious, to be safe, to be secure. There were many voices in my life pleading with me to stand still, to suck it up, to be careful.

There were one or two telling me to listen to my inner voice, and trust. The inner voice is mysterious, except to the deeply religious. They preach that the inner voice leads the way to God.

My inner voice has not led me to God, but more and more, as I cleared away all of the fear and anger and other debris around it, it has led the way to life.

I remember Steve Jobs warning in his famous graduation speech – he was dying then – against letting the noise of others drown out our own inner voices.  They do it almost every time, to almost every one.

I love my inner voice, it is not really a voice in my case, more like a feeling, an intuition, a sense. I feel this is right. I know this is wrong.

I remember Anthon  St. Maarten writing about the inner voice in Divine Living: The Essential Guide to Your True Destiny:

“you are one thing only. You are a Divine Being. An all-powerful Creator. You are a  Deity in jeans and a t-shirt and within  you dwells the infinite wisdom of the ages and the sacred creative force of All that is, will be and ever was.”

H.L. Mencken wrote that conscience is the inner voice that warns us somebody or something may be looking. But my inner voice cautions me that I may be looking, and that is quite different, because I am always present.

My inner voice inspires to stop caring about what others think, and just listen to what I think.

We have to get Kelly Patrick, a devoted, beloved  Mansion nurses aide, out of the tent she is living in with her grandson and daughter and into a a double-wide trailer that she needs $1,600 to rent by the end of August, and before the winter descends.

Kelly is one of the unsung and unpaid heroes who take care of our aging mothers and  give them the love and attention and care that they so desperately need. In a just world, she and  her colleagues would make more than enough money working so hard to live well and securely.

In our world, they almost all struggle to keep up.

Kelly earns less than most McDonald cashiers. In America, it is increasingly not enough to have a good job, obey the law, work all of your life. The people like Kelly who are at the bottom of the pay scale are struggling to keep up, and often falling behind. I see it every day.

A month or so I got a Facebook message from an aide at the Mansion, a Medicaid Assisted Care Facility here in Cambridge, N.Y. The employee did not give her name, she said she was worried about Kelly Patrick, one of the hardest working and most loved and experienced CNA’s (certified nursing aides) at the Mansion.

She told me Kelly  has been taking care of her grandson Logan and her daughter for seven years, her daughter has had some difficulties and Kelly rushed in to help. Last month, her landlord announced he was selling the trailer they were living in, and Kelly had just a couple of weeks to vacate her home. She discovered that home and apartment and trailer rentals have shot up through the roof, she couldn’t find a place she could afford.

Taking care of her daughter and grandson had drained her bank account and left her with growing bills.

She was forced to move into her small camping tent in her parent’s backyard with them both because she could not afford to pay between $2,000 and $3,000 to put down  deposits and two months’ rent (one for first month, one for last month) on any of the few apartments that were available in this area.

Since even the most experienced CNA’s only make about $12 an hour, she just didn’t have that kind of money. “I”m not like a lawyer person,” she said, “who has $3,000 lying around?”

I checked and found that many McDonald’s and other fast food  cashiers make $13 to $15 an hour.

The text message I got from the Mansion aide said: “Just wanted to give you some info on Kelly’s situation. ..I heard they found a place but need $1,600 to move in..Kelly looks really tired and down these days …I’m hoping that she will be able to find the funds to move….She did say she will probably have to store things and put her tent out on her parents lawn till something comes up and she can can save up money.Her parents have a very small house so she can’t stay there…Just wanted to give you an update on her.She said if she doesn’t find anything local she will move out of area and will be forced to leave the mansion.. We will lose a great worker that’s for sure. She loves it here.”

I figured out who this aide was, and we have worked together, she  knew I would respond.

I got a number of messages like that from people on the Mansion staff, where Kelly is loved and respected. They were horrified that she was living in a tent and they were worried about her. Kelly told almost no one about her being in a tent, but this is a small town, no secret stays secret for long.

This life was taking a toll on her and her family.

I approached Kelly and asked if I could help her. She didn’t hesitate.

She said no, absolutely not. She was adamant.

I said I didn’t have $1,600 myself, but I thought I could raise it on the blog, the Army Of Good would help, I could patch together the rest. She knew from her work at the Mansion what the Army Of Good was capable of.

But she said she didn’t need or want any help, she would somehow find a way to work herself out of this.

Kelly was embarrassed to be living in a tent, she said, she didn’t want people to know. She has always worked hard and  taken care of herself and her daughter and grandson.

I told her I would respect  her wishes, and that I was here if she needed me. I also knew she was facing an awfully steep uphill struggle.

I really hoped she would call me and let me help,  I thought about her almost every day.

The refugees we work with faced some of the same obstacles – they worked hard and played by the rules, but it was hard to get to level ground sometimes.

The thought of Kelly in that tent got into my head, and wouldn’t fade. But I had to respect her wishes.

Saturday night, I got this Facebook message from Kelly: “You told me when I needed something to let you know.Well I need help to be able to get into a.place the end of August first part of sept. We need  $1,600 to move in so I was wondering if you could put something on the blog as you suggested. I feel horrible for asking for help but I’m emotionally drained and need a bed to sleep on and not in a tent …let me know what info you need from me and I’ll give it to you….”

She said it was time to think of her grandson and not be so stubborn.

If you know Kelly, you know that this was one of the hardest things she has ever done in her life: ask other people for help. I wrote that I felt I owed her help, she does so much good for so many people every day.

Most of the people in assisted care, especially Medicaid assisted care, feel abandoned by their families and the outside world. Kelly makes them feel loved and cared for, I see her amazing work all the time. She makes such a difference.

There is no way on this earth that she should be living in a tent.

I first encountered Kelly when I was writing about Connie, one of the first residents of the Mansion  I got close to and that Maria and I came to know well. Connie said she felt Kelly was the daughter she never had, and Kelly took the most wonderful care of Connie, calling her “momma.” Sometimes, when things were rough (Kelly got divorced in 2007) she would sit on the floor next to Connie and talk for hours.

Kelly took the most extraordinary care of Connie, who loved her so much and trusted her completely. She was attentive and patient and loving to all of the Mansion residents, and it was soon apparent to me that the night shift was especially difficult.

Kelly is one of those unsung and underpaid heroes who take care of the aging, soothing them when they are upset, helping them when they are sick, changing their diapers and wiping their bottoms, calming their tantrums and panics. Nighttime shifts are the hard shifts at places like the Mansion, many behavioral problems arise, and loneliness and fear often sets in.

It is simply outrageous to me that this 49-year-old woman, who has never been in trouble, does not drink,  or failed to do good and work. She has a steady job and cannot amass the money necessary to rent a trailer in a small town in upstate New York.

Really? In America?

Kelly is not a spendthrift, she doesn’t have fancy clothes or jewelry, she lives  frugally, cooks at home, she  has worked just about every day of her life, she just got caught in one of those nets that can pull a hard-working person under.

She  had two mouths to feed in addition to her own, and much like some of the refugee women we are helping, just needs some help in getting back on her feet and having a warm, clean and dry place to live.

She says she will have no trouble paying the $800 rent on the trailer she is hoping to live in. She does not want additional help.

Kelly has worked as a CNA for nearly 30 years and makes little more than the minimum wage, which is $11.20 in New York State.

This summer, severe storms and hot and wet weather has made her family’s lives in her tent especially difficult. She sleeps in one room with her grandson, they store their clothes in another, her daughter sleeps in her own room.

One night, a limb came tearing through the side of the tent, the flaps and roof have been ripped and torn off, the tent is damp and cold, and her parents tiny home is much too small to accommodate five people, even for social visits. At night, she and Logan sometimes hold one another as animals move outside of the tent.

She and Logan and her daughter can take showers in her parents house, but she is getting sick a lot and sore and the few cold nights we have had recently have made her realize she can’t stay in that tent with her daughter and grandson when winter comes, or even when the weather turns cold in October.

So I think we really need to get Kelly Patrick out of that tent and tie up the trailer home she wants to rent. It has three bedrooms and is sturdy and warm. She says her grandson really needs to have a stable home situation and his own safe and dry space.

Kelly’s daughter has is dealing forthrightly with some of her own issues, Kelly says she has a “heart of gold,” and is getting her life together. She is committed to helping care for her and  her grandson Logan.

I am committed to getting Kelly out of that tent, I’ve  seen her wonderful work at the Mansion many times, she is a wonderful source of love and support for the residents. I met with her Sunday evening, she was very sad to be asking for help, but accepting of the need.

If you can, please help the Kelly Fund, you can send a contribution to The Kelly Fund, c/o Jon Katz, P.O. Box 205,  Cambridge, N.Y., 12816, or via Paypal, [email protected].

One way or another, Kelly is getting out of that tent and into her trailer. Thanks.

I’ve gotten very few awards or honors in my life, but this one will be special. The Albany Warriors soccer team – I am the sponsor of the team – decided to give me a thank-you gift.

Sakler Moo, a member of the team and a gifted artist, volunteered to make a sketch of me inspired by a photo Maria took a few weeks ago.

This is the first draft, it is not yet finished. I love it. I’ll get the final in a week or so, it’s going up on my wall in my study. I hope the whole team can sign it. It means a lot to me. I look a bit menacing, but that’s all to the good.