21 December

When People Disappear: The Best I Can Do For As Long As I Can…

by Jon Katz
When People Disappear

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.

 

2 Comments

  1. Jon, this post really resonates with me. I have been sending mail to children battling illnesses, mainly cancer, for the last year now. Over the course of that time, many have passed away. Some left a more noticeable hole in my life than others when that happened. But, it didn’t really hit me until Halloween, when I was going through my address list and saw how many names had been crossed out with a “D” (which I put to let myself know they are now deceased, as opposed to just a bad address or whatever else may have happened). I also write to a lot of elderly folks in nursing homes and places like the Mansion, and that has had a similar dwindling of names over time. For a bit I got discouraged and thought maybe I wasn’t strong enough to keep doing this. But I came to a similar conclusion like yours above, to do as much as I can for as long as I can. It really can wear on you, when you’re someone who cares. But, I think some of us are meant to carry this burden. We have the ability to love others and care during the time they most need someone to encourage them, and in taking on that pain, we help take a little away from them. At least it’s what I tell myself. My Rabbi once told me that there’s an old Jewish tradition that every thing we do for someone who is ill helps take away a fraction of their illness. I know it’s not meant literally, because many still pass. But, I like to think it takes away a fraction of the pain it causes. Thank you for writing this. Also, thank you for sharing the Mansion with us out here. I found you and the army of good via a woman who shared the Mansion’s address with me on a facebook comment a couple months ago. I have enjoyed following you and reading your blog since.

    Crystal

    1. Thanks Crystal, I am honored to have you posting this message here, and I appreciate it. I think your Rabbi was right. Blessings to you.

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