I’ve worked out the details for a Valentine’s Day lunch and celebration at the Mansion on Valentine’s Day, February 14. I’ve been working on a poem about Love in my Poetry Workshop – “What Is Love?”- and yesterday, Mansion Director Morgan Jones approved my plan for a special lunch.
The Round House Cafe agreed to cater the lunch – lasagna, meat and vegetable – cake and cookies. The Mansion food staff will provide the salads. I hope the Army Of Good can help with decorations, banners and cards and favors – you know the drill.
The things you make and send are a testament to the potent mix of creativity and love.
The Army Of Good is funding the lunch, along with me. Thanks for your support.
The theme, of course is love.
Valentine’s Day is the 14th. Here is a current l iist of Mansion residents who wish to get your letters and messages (or Valentine’s Day Cards.)
Winnie, Jean A, Ellen, Mary, Gerry, Sylvie. Kame. Diane. Alice, Jean G. Madeline, Joan, Allan, John K., Helen, Bob, Alanna, Barbara, Peggie, Dottie, Tim, Deborah, Art, Guerda, Brenda, David, Wayne, Ken, Ruth.
If you wish to support the Mansion work, you can donate via my Post Office box, Jon Katz P.O. Box 205, Cambridge, N.Y., 12816, or via Paypal, [email protected]. Please mark your check “Mansion, Refugee” or one of the other. All donations are kept in a separate account.
Sylvie has an office – a hallway at the Mansion, she writes and answers letters, and studies her Jehovah’s Witnesses tracts and literature. She often cuddles with Red while she talks on the phone. He’s fine with it.
Sylvie loves getting letters. You can write her c/o The Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816.
You can also write the other residents who wish to receive letters and messages: Ruth, Ken, David, Brenda, Guerda, Art, Debbie, Timothy, Dorothy, Barb, Alanna, Bob, Helen, John K., Allan, Joan, Madeline, Jean, Alice, Diane, Jane, Sylvie, Gerry, Mary, Ellen, Jean, Winnie.
I’m happy to report that Joan will be returning to the Mansion shortly. I don’t know where she has been or how long she will be staying, but I will be happy to see her again.
Joan is gone. I went to her room and knocked on the door to bring Red in to see her, and give her a fluffy stuffed cat, but the room seemed different to me, still and bare in a way I recognized. And Bill is gone.
I should say up front I have no idea where they have gone, or why. And I will not be told.
The other day Joan, one of my favorite portrait subjects and one of my favorite people, was right there, showing me the Spring she saw out the window, the next day she was gone.
Bill, the 84 year old gay man struggling bravely with the harsh effects of a serious stroke, seeking to connect with members of his community, is gone also.
So many of the people in his community did connect with him, write to him, send him books and cards, after an appeal on the blog. That meant the world to Bill.
I was just beginning to read him a bit from the works of Armistead Maupin, the famous chronicler of gay life in San Francisco before and after the plague of AIDS.
Bill couldn’t yet read for himself, but he was beginning to focus on stories he could follow. He is gone, I could see this in his room too, untouched for several days.
Working with the elderly, with people at the edge of life, always takes an emotional toll – on the staff, the families, the volunteers, the friends. People get sick, and leave. Sometime they go to hospitals for emergency treatment, sometimes to nursing homes for rehabilitation and extreme care, sometimes to visit with their families. Sometimes they die.
In hospice care, I learned people were gone when I knocked on the door and nobody was home That’s how I knew, there are no goodbyes or hugs or advance warnings for people like me. I don’t know where Joan or Bill went or why. I will figure it out eventually, or when it is okay for me to be told.
I can write about people’s lives and their health if they give me permission. I always ask them, and also the staff. Otherwise, I can’t be told anything.
The only reason I knew Connie died was that the family asked the Mansion staff to call us and tell us. Otherwise, it would be unethical, even illegal, for anyone to tell me. So you have to have your own way of dealing with it, or you will “bleed out,” as I call it, just run out of steam and heart. I guard my heart.
As a volunteer, I am in my comfortable space as a perpetual outsider, I am never an insider anywhere I go, that is just my nature. It feels like family, but it is not family, I am not family. I can go home, I can walk away. They can’t.
I am something in between staff and family and friend. I don’t really have a name for it. Neither does anyone else.
There is a wall that is always between me and them, as it should be – family, staff, doctors, social workers – are inside, people like me are outside. I have a right to help, no right to know. Privacy laws and many federal regulations meant to protect the elderly quite often isolate and surround them, but I respect those boundaries and walls and never try to get around or over them.
Much of the time, I don’t want to know. It would get in the way.
I get to do my work there because I honor these boundaries and would never willingly violate them.
Lately, Joan always asked me to dance when we met, we would waltz around the hallways and she would give me a big hug and kiss when we were done. I could see her memory failing rapidly, she was often disoriented, but she always recognized me, even if she didn’t know who I was.
But she never stopped smiling.
And she always remembered Red. I loved the stories and poems and memories that somehow came out of her, several are hanging on my study wall. Joan was beautiful and sweet. She is beautiful and sweet. So was Bill, all he wanted to was to find his community again. This was an uphill struggle for him.
Under the law, the Mansion staff cannot and does not reveal any medical information to me. Joan and Bill might be in the hospital, in rehab or a nursing home, they might be gravely ill. I think I would know if they had died, that would be more apparent. The rooms would be emptied out, a new person would appear.
I sometimes ask the staff how people are, especially if I haven’t seen them, but I usually get a blank stare or a mumble. They’re away for awhile. I don’t ever push it, that would make everybody uncomfortable, I just move on.
the truth will always reveal itself in one way or another. There could be a hundred reasons, but anything that takes that long suggests a serious problem, and the Mansion can’t handle serious problems beyond a certain point, and is not allowed too by law.
Assisted care facilities are meant for the mobile and reasonably healthy, they are residences, not nursing homes. The staff isn’t licensed to provide continuing and extreme medical care for people who need it.
When the residents need it, they usually have to leave. And they rarely come back. The residents don’t fear death as much as they fear leaving the Mansion. It has become home and family for them, the next stops along the chain of life are frightening and laden.
Connie was tough and determined, she fought her way back. But not for too long.
Those who disappear are rarely mentioned, unless there is a memorial service, or members of the staff go and visit them in their new homes, which they often do. They do get to say goodbye, and it is important to them.
I rarely do see the residents beyond the Mansion, I think it’s over the line for me, my job is to full the holes I can fill, I can’t take on more than that I could be useless and spent. I need to keep my focus, it is easy to fall in love there, and that is a surprise to me. I used to avoid assisted care facilities.
Many of you out there have been writing to Joan and Bill and others for a good while now, but I will not be able to tell you how they are or where they are. When people disappear, I take their names off of the resident list. That’s about all I can say or do.
I couldn’t say how they are even if I knew. It’s a question of letting go. It sometimes feel’s unnatural, but you do get used to it. It’s where I belong.
But I can tell you what I see with my own eyes, and Joan and Bill are gone, at least for now, and I don’t know if I will be dancing with Joan again, or reading stories to Bill.
We did good while we could, we followed my motto: I do the best I can do for as long as I can.
And then I do the best I can for somebody else. And there is always somebody else.
If Joan and Bill can come back, I will be happy. If not I will be sad. But not for long. The moving finger writes, and I write with it….
As much good as you do, you are outside the circle too, and that is the rightful place for us to be.
Here is an updated list of Mansion residents, if you care to write them at The Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816:
Winnie, Jean, Bill, Ellen, Mary, Gerry, Sylvie, Jane, Diane, Alice, Jean, Madeline, Allan, John K., Helen, Robert, Alanna, Barbara, Joan, Peggie, Dorothy, Tim, Debbie, Art, Guerda, Brenda, David, Kenneth, Ruth.
I want to wish all of you a wonderful Christmas, and meaningful holidays. You are the best.
I took one load of clothes over to the Mansion today, I met with Hollyanne and Brittany, two of the very dedicated day staffers and we had a through discussion about who needed what. They know.
The clothes campaign became a little bit more complex in recent weeks, as we learned of several people who urgently needed clothes, including personal garments like underwear. This is a new twist for me and the Army Of Good and I like it, I’m figuring out how to do it effectively and economically.
Naturally, some of the residents are reluctant to talk about their personal items and needs, especially with me, so it took some time to figure everything out, and I don’t have much experience choosing women’s clothes and underwear and socks.
Learning what the residents need is an art. The staff is notoriously discreet, HIPPA privacy laws are strict and observed. I often don’t know for awhile if somebody is sick – Bill is in the hospital now, I don’t know any details – or even gone. I don’t generally even ask when I find a room empty, I’ll eventually figure it out.
There is a strange boundary around being a volunteer, and I’m comfortable with it. I’m a natural born outsider, and I like the freedom of it. I’m a good guerrilla volunteer, I can often figure things out.
But I have to do it on my own, and I accept that, those are the rules. The staff can talk about clothes and other needs, at least to a degree. Even if I do learn of an illness, I can’t write about it unless I have the explicit permission of the resident and the approval of the staff.
I honor that. It’s sometimes hard on the people out there who are writing, because people just sometimes disappear or stop responding. I can’t tell them what’s going on, even if I know. It is one of those selfless things, we do it because we want to do it, there is nothing expected or demanded on the other end.
We made a lot of progress so far, we decided where the sweaters, winter jackets, sweat pants and shirts needed to go. Almost everyone has warn winter caps and sweaters. Only two or three now in real need of clothes.
We talked about who needed what and in what sizes, what personal tastes where, the staff is very much in sync with the people who live there, I’d hold up a sweater and Hollyanne or Brittany would say “I know who would love that,” or “I know who wouldn’t.” This is a good thing to be going on Christmas week, I got a few more requests today that I need to take care of.
We left the clothes with Hollyanne and Brittany to distribute, they are best coming from them in most cases. I did visit Ruth and Ken and gave her a necklace and him a sweater. They both go outside at least once a day together.
Maria came along with me to some of the thrift shops and helped get me started, I’m cruising along now.
It’s my goal to make sure everyone in the Mansion has the clothes they need by the end of the week, and like everything else I do, there is something wonderfully selfish about it: it makes me feel good.
Let the politicians and cable gasbags and warriors of the left and the right chew one another up, perhaps they will eat one another and spare us their unpleasantness. I’m going with good.
Tomorrow, I return to the Mansion with another two bags of clothes, and we’ll see where we stand. We are almost there and thanks for your support, without which this would not be happening.
Here is a newly updated lists of Mansion residents who would appreciate hearing from you. You can write to them c/o The Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816.
Winnie, Jean, Ellen, Mary, Gerry, Sylvie, Jane, Diane, Alice, Jean, Madeline, Joan, Allan, William, John K., Helen, Bob, Alanna, Barb, Peggie, Dorothy, Timothy, Debbie, Art, Guerda, Brenda, David, Kenneth, Ruth.
You can contribute to the Mansion work by sending a donation to me c/o P.O. Box 205, Cambridge, N.Y., 12816 or via Paypal, [email protected] Please mark your check “Mansion/Refugee Fund,” or one or the other.
All donations are sent to a special account monitored by a bookkeeper and a certified accountant. Every penny goes to the people who need it, there are no administrative or office fees.
The Mansion residents were quiet, somber, reflective at Connie Martell’s Memorial Service. Here, Jean, Madeline, and Joan listen to the eulogy by Rev. Earthowl. They captured the feel of it.
