You can only see the beautiful spider webs for a few minutes, if there is dew, and the sun comes up at just the right angle. If you blink, they are gone. Yesterday, walking out early, I saw Fate through the web just as the sun came up and shined on the dew drops hanging off of the web.
I could look at that for hours, but I only got a couple of minutes. The camera got it, though.
Almost everyone who has spent time in a nursing home or assisted care or a dementia facility knows of it, has heard of it, has experienced it.
As people grow older, their memories fade, they often become confused and forgetful. Part of that is disease, part may be medication, or the experience of being cut off from everything they know and love. As that happens, friends and family often abandon them, melt away, visit infrequently or, over time, not at all.
It is not always a question of callousness or lack of feeling.
It is difficult to talk with people you know and love as they literally lose their minds and memories and their body fades. The threads that connect them to the people they know. have frayed. They no longer have common experiences to share with the outside world.
I marvel at the love and patience of the Mansion staff and other places where I have gone to do therapy work, they are, in many ways, the new family, often the last family.
Modern medicine keeps people alive longer than ever before, and has made medical treatment so complex it can no longer be offered or managed at home. Aging and dying have taken on a life of their own, it simply runs away with itself, no one seems to manage it or think about it.
So many older people are sentenced to a kind of limbo, a twilight zone between life and death. It can last a very long time.
I remember visiting my mother in an assisted care facility where she was living.
She hated being there and desperately wanted to go somewhere else, there was nowhere else to go. For some years, I have visited the elderly in various institutions, I have never found it difficult to speak with them or be with them, even in dementia units. It was almost impossible for me to be near my mother, to witness her fear and confusion and resentment. To see her decline.
It wasn’t an abstract thing, it was intensely personal, and finally, I could not handle it. I can handle it now.
Some families live nearby, some are especially close to their parents at the Mansion. I see them often, they take their mothers or fathers out to dinner, for walks, to doctors.
But much of the time, visits are infrequent, sometimes, not at all. Over time, the space between them gets longer and longer.
People have so many reasons for not coming often. “I am so busy with work and kids and travel,” one anguished son told me, “but I have to be honest, it is just painful sometimes for me to come here. She is declining so fast.”
They are busy, or far away, or have their own issues and problems to worry about. Often, they spent difficult years caring for their declining mothers and fathers, and are almost desperate to turn this responsibility over to someone else. Caretaking is a grinding trauma in itself, it takes a hidden toll on many people.
They have the right to live their lives, we are all here for so short a time.
Visiting is especially difficult when people have severe memory problems. It is difficult to speak with them in normal conversation, it is painful to see them struggle for words and memories, even more painful when they can’t recall shared memories or sometimes, even who the people visiting them are.
I know it is hard to visit sometimes. I think we all think, this could be us, this will be us. That is hard to bear.
I have great empathy for people who can’t visit often or stay long, and great empathy for the people who feel abandoned.
They may forget the details of the experience, but their emotions are very much alive. People intuitively know when they are left behind, I imagine it is a powerful and necessary instinct for human beings over time.
I always feel the people in the Mansion are especially fortunate, they are loved, well cared for, worried about. Help is always close by, they are listened to and engaged. That is not always the case in assisted care, I have visited places that are very different.
In our culture, we have become adept at prolonging life, indifferent and incompetent at keeping it meaningful.
We put people away and cut them off from the normal world, the world they lived in all of their lives, and we are surprised when they become disoriented, even forgetful. We rush them back and forth to hospitals and doctors with a lengthening list of surgeries and procedures, and medications that often stun them and fog their minds and thoughts.
I think remembering is sometimes painful for them, it makes them lonely.
For awhile, friends come and so do neighbors and family members.
But over time, it seems to be difficult. Lots of people talk about it. The Mansion staff is generous with their hugs and touches, people on the edge of life so miss being touched and hugged. They are very much a family, close to the residents, close to one another.
Every day I visit, someone comes up to me and takes my hand, and thanks me for being there with Red.
One resident can never recall my name, but she knows my face. “I want to thank you for coming back,” she says. “Many people don’t come back.”
Two minutes later, meeting me on the way back down the hallway, she says “I want to thank you for coming back. Many people don’t come back.”
I will come back, I say. I will.
The Mansion residents love to get mail. Please be mindful of sending too many gifts. Many of them cannot be used and are not needed. If someone needs help, I try to share that here on the blog.
Here is a list of residents who would like to get mail: art, Brother Peter, Winnie, Jean, Ellen, Mary, Gerry, Sylvie, Jane, Diane, Alice, Jean, Madeline, Joan, Allen, William John K., Helen, Connie, Robert, Alanna, Barbara, Dottie, Tim, Arthur, Guerda, Brenda, John Z.
You can sent the messages and letters to the Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816. And thanks.
Red and I were invited to a surprise baby shower for two Mansion aides who are soon to give birth, Jessica and Courtney. The residents made them diaper cakes (below) and played some games and had punch and cake.
The shower was quiet and intimate. It takes a special kind of person to work there, I don’t think I could do it. It takes patience, compassion and a great deal of energy, emotional and physical.
When I’m there, I like to help out, I’m not much for sitting around. Red makes the rounds, and I help serve the punch and cake and distribute the presents.
The Mansion often feels like a family to me, and to one another. I find myself drawn to these kinds of connections, the residents don’t have a lot of lasting power, especially on a hot day. But the feeling is very real.
I gave Courtney and Jessica each a check from the Army of Good.
Tomorrow, a group of residents are coming to Bedlam Farm to work with Maria in her studio. I’ll be there to help out, and they’ll get to see the other Red, the working Red.
Jane’s electric lift chair arrived at the Mansion this week, and she is grateful for it and thrilled about it. Jane, who is working hard on her painting skills, is wheelchair bound, she can’t stand or walk by herself, the chair helps her sit comfortably, stand up by herself and without help, and also has a massage feature that has already eased some of the pain and discomfort in her leg and back.
“It is just wonderful for me,” she said, “I am so grateful and thank you for it.” Thanks to the Army of Good, take a look at what you did. Jane has a good chance now to keep her back and muscles fluid, to get in and out of her wheelchair without assistance.
Medicaid rules require that residents in assisted care facilities must be mobile and able to get themselves from one place to another. So this chair is important to her, she showed me how to work it and she had as wide a smile on her face as I have yet seen.
Jane also has severe hearing issues, the chair you donated has already made an enormous difference in her life. If you wish, you can write Jane c/o The Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816.
You can also support the Mansion fund by donating care of my post office box, P.O. Box 205, Cambridge,N.Y., 12816, or via paypal, [email protected] And thanks.
You have made an enormous difference there. On a smaller note, I’ve started a weekly or bi-weekly practice of giving the very hard-working evening aides money for some pizza or Chinese takeout dinners.
They work long hours for little pay and their work is intense and demanding. I want to think of them as well as the residents. I usually give them $20, which covers pizza or take out. They never ask for anything, and have very powerful connections to the residents I want to think of them, too.
The Frigidaire 28,000 BTU The Army Of Good ordered for the Mansion kitchen arrived yesterday, and right in a middle of one of the worst heat waves on record. Because of some life issues, the staff can’t instill the new AC until Monday, but there were happy kitchen workers and residents when it arrived.
This will make a huge difference to the hard-working and much loved kitchen workers who have been holding up through some searing days in the kitchen. This will make a lot of people more comfortable, and that will ripple down through the whole facility. Thank you so much for your support.
You can support the Mansion work we are doing by sending your donations either to my post office box, P.O. Box 205, Cambridge, N.Y., 12816 or via Paypal, [email protected].
The Mansion is a Medicaid facility, the government does not pay for the room and board of the residents, rather than for services to care for them. Federal subsidies have been drastically cut and budgets are tightening.
Our work has done a lot to fill in some of the holes the residents face, from portable air conditioners to clothes to soap and disinfectants, to books, CD’s, letters and art supplies. The Mansion residents think you are all angels and good fairies. Something to that. Thanks for helping with the air conditioner.
