I wanted to catchup with some of you and make sure you know what you have done for the Mansion residents in recent weeks.
Today, we brought the last six cushions over to the Mansion porch, we made sure every rocking chair has a cushion to sit on, an a cushion to lean on. The residents and their sore backs and bodies are very grateful.
Today, a shy older woman at the Mansion came up to me in the hallway and said she needed an air conditioner, she told me the sun just beats down on her room al day and during the recent heat wave, it was uncomfortable for her and draining.
She said she was just too shy to ask me before this. Until tonight every resident of the Mansion who wants an air conditioner now has one, a program we started last year and finished this Spring. These gifts offer comfort and peace of mind every day this summer.
We also put a large air conditioner into the window of the Mansion kitchen, their old air conditioner was broken. It was installed two weeks ago, just before the heat wave. The kitchen staff is very grateful to the Army Of Good.
Yesterday, T-shirts arrived at the Mansion for two male residents who have not had new T-shirts for some years. Their old T-shirts were literally disintegrating around them.
We sponsored outings for a boat ride on Lake George, a visit to an aquarium in Rotterdam, N.Y., lunches at local restaurants.
We have buzzed through three Mansion Wish Lists on Amazon, got food for the cat and the birds, tents and supplies for the summer festivities and parties, blowers and bulbs and manure for the garden, bins to hold all of the CD’s pouring in, and bucket loads of prizes for the Mansion bingo games.
Beyond that we have bought clothes for those who need them, from bras to underwear to sweatpants, and just this week bought four new sets of tablecloths for the Mansion dining room, they will appear on the tables over the weekend.
You have done a lot, and I am immensely grateful. If you wish to continue to support the work at the Mansion, you can send a contribution to me at the Gus Fund, c/o Jon Katz, P.O. Box 205, Cambridge, N.Y., 12816 or via Paypal.
Every penny goes where it is supposed to go, and I work hard every day to show you photos of the people you help and the things your donations help us bring them. Thank you.
I went over to the Gulley’s Friday afternoon with some fresh cut sweet corn, Ed’s daughter Maggie had just come back from a trip to the Midwest with her daughter Morgan, who is considering colleges.
Maggie and Ed are close, when he woke up from a deep sleep, she helped Ed drawn and sketch with colored pencils. Ed had a difficult night Thursday, he was up feeling anxiety and frustration. In the morning, the family moved him to a lift chair, where he seemed to be more comfortable.
As he started drawing, Carol, Maggie and her son Cooper came in and all three gathered around the chair to help him, pass him pencils, hold the pad and watch him draw. I wondered if all of this attention bothered him, but it didn’t seem to, he says he draws strength and comfort from his family.
Cooper walked up to Ed and asked him what he was doing. I’m drawing, said Ed. “Can I help?,” asked Cooper, and he joined his mother in helping Ed draw. I saw that this was a beautiful thing for Ed, I withdrew, and then left.
I think the trick is knowing when to stay, and when to go, when you are needed, when you are not. This was family time that was critical to everyone involved. I was not needed.
Ed Gulley On Friday
Ed’s four children and their children are almost always moving in and out of the house. Many of them come a part of every day to run the farm, to bring in the hay and milk the cows and help birth the calves.
When Ed needs them to help him move or sit up – he can no longer do this by himself – they all appear almost magically and help out. They are always nearby or present or available.
This kind of family connection is alien to me, I always felt I was on my own except for my sister and most of the time i was. When I was in real trouble, my family were the last people I wanted to go to for help, or wanted around me in a crisis.
The family is just there – no drama, argument, hesitation or confusion, they have come together as one whole, and they are just taking care of things.
Ed is just the opposite. When he is in trouble, he wants his family around him, as often as possible, they are all eager to help. The grandchildren all know he is sick and dying, they never flinch from the hardest parts of Ed’s illness.
They are farm children. No one protects them, or lies to them, or sugar coats what is happening. At night, his sons come over to help him use the commode. They are eager to help. Ed is talking about gaining strength so he can walk again.
When I drive by, I see them hauling hay, cleaning out the barn, tending to the calves, working just as hard as Ed and Carol always have.
When Ed wakes up, he wants to draw, it seems to steady him and calm him. He was very happy to see Maggie come back from her trip, and she was very happy to see him. “I missed you, Daddy,” she said.
“I missed you too, honey,” he said. As always, I am invited to dinner – a clam and fish fry – but I decline, I had to go to the Mansion to call the Bingo Game with Maria.
The hospice staff had come and gone, Ed was checked, washed and given some medication.
Ed and I talked for a bit, but then, I took his hand and held it for a bit, and said I would see him on Sunday. I confess to being a little worried about heading off with Maria Saturday night to finish the trip we started last week.
Last Sunday, as we headed for a museum, I looked on the Bejosh Farm Journal and read the reports of an alarmed Carol, she thought Ed was slipping rapidly. We hurried home, but we bounced back the same day.
So we’re going back to Massachusetts and staying over one night, we’re going to see a play at the Williamstown Theater Festival, going out to dinner, and then Sunday morning to Mass MoCA, the sprawling museum in North Adams, Mass. that we missed going to see last week.
We’re staying in one of the cheap and seedy motels that Maria loves, she is very happy in them.
Then home.
I told Ed I wouldn’t be around Saturday, but he didn’t mind at all, even if even heard me, he will be surrounded by people he loves and who love him. He will have plenty of company and attention and help,
Ed continues to decline a bit each day. His mind is fuzzier, he seems to be struggling with his breath sometimes, he can move or control very little of his body. He is almost always uncomfortable.
It will be good to get away for a bit, I need it, and I think Maria does also. This is long game, not a short one, and if you can’t take care of yourself, you surely can’t take care of anyone else.
I love seeing Ed every afternoon, it is important to me, and perhaps to him, but I also understand that it is draining and exhausting, I can only imagine how Carol feels.
I can still get Ed to smile, either by telling him a story about the excesses of the animal rights movement, or calling him a blowhard. He still has a ready smile, he still has a comeback.
I do very little for Ed, I mostly bring some food and sit and be with him. The family does the hard and grinding work of caregiving.
But it affects me, of course, and I often feel spent when I get home.
Tomorrow, I’ll teach my class and then we will head out to Massachusetts for one night. I know I will be thinking of Ed, but I know I will be happy going.
We had a special time at the Friday night Bingo Games, Joan won two games and joined us in a spontaneous new venture, we are calling it the New Mansion Bingo Chorale.
A few weeks ago, I started singing out some of the Bingo numbers, and was hooted and jeered by the residents. Tonight, Maria and I both started singing the call numbers and all of a sudden, almost everyone joined in.
I was amazed, touched, excited. We are thinking of creating a new Mansion Bingo Music Chorale. We had a lot of fun tonight, there was no place I would rather be. I think I started something, and Joan had a blast, winning games (with some assistance) and joining happily in song.
In the morning the sun hits the Pole Barn, the only time of day it is not in shade. The sheep gather in a line in the back and stare out at the world. When they usually see me, they bunch up, assuming I have a dog. This morning, I didn’t, and they came closer to me, to sniff me. The dogs have affected my relationship with the sheep, they are wary of me.
And I guess I look at the sheep the way dogs do, as something to be moved around. After years with border collies, I look at sheep the way they do.
