27 September

The Mansion Chronicles: When Friends And Family Melt Away

by Jon Katz
Abandoned By Friends And Family

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.

2 Comments

  1. I visited my mother often when she was in Assisted Living, my husband and I even got married there so she could be part of out wedding!
    However, when she declined and her money ran out she had to go to a nursing home. I found it increasingly difficult and eventually torturous to be there as she faded away not knowing me, not knowing anything.
    I have much guilt about that time in her life. Thank you for letting me see it’s not just me feeling that way.

    1. Thanks for the message Penny and your honesty. You did the best that you could. Letting go is important, I appreciate your message.

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