Sylvie is a great letter writer, and a great letter reader. She loves to get letters, and says she has made many new friends in the Army OF Good. She asked if I could bring her more notecards and she said yes. I asked her if she needed stamps, and she said yes. We are working together to fill out the addresses on her letters, many of them get returned, and Sylvie turns them into prayers.
I’ll bring some tomorrow. Maria and I are doing Bingo night again on Friday. We have to figure out some new prizes, I gave gift certificates to some of the winners two weeks ago, and it turns out one of them took the certificate to the convenience store, cashed it in and tried to buy some liquor.
It didn’t work, but we are getting some different prizes for this Friday.
Sylvie doesn’t play Bingo, but she loves getting letters, they mean a great deal to her.
You can write Sylvie c/o The Mansion, 11 S.Union Avenue, Cambridge, N.Y., 12816.
I’ve written a lot about the Mansion, and much of it has been sweet and uplifting and touching. There is another side to being in the Mansion, the staff knows it and I have seen it, but today I was closer to it than before, it was a hard day at the Mansion.
I was reminded how grueling the work of the staff is, and how strained the lives of the residents can be, and how discouraged I can get at times, something I am not sure I have ever written about. But I should, it is just as much a part of the picture as a loving therapy dog like Red.
There are good days and bad days at the Mansion. The residents are cooped up lately, there is so much snow on the ground, they can not take their walks or sit on the porch. Today, they were crowded into the Activity Room, Maria and her art class were having fun on one end, but suddenly, there was great tension on the other end.
People were cruel to one another, impatient and intolerant. Verbal struggles broke out about who was sitting where, and who walked around too much, and how Bingo was just another form of gambling and wrong, and about who spoke too loudly, or was too forgetful, or who left their things on the sofa making it difficult for other people to sit there.
The arguments rose and got warmer, I walked into the middle with Red and tried to distract people. We tried to rehearse our skits, but one of the cast faltered and stumbled and couldn’t get through it, and one of the other cast members was visibly disgusted and angry, i canceled the rehearsal, trashed the video, it was too painful to watch.
At such times, there is little I can do. Red is a diversion, and he quiets people down. I try to talk about other things – the weather, animals, flowers. One of the residents was angry with me because I invited him to be in the cast. For some reason, he found this offensive and shouted at me that he wasn’t going to be in the class, not matter what I did.
I said he wasn’t in the cast, and heard my voice rising, I stopped and asked everybody if anyone wanted to take a walk down the hall or see Red in their rooms. A couple of people said yes. It was a bit surreal, because on the other side of the room Maria was having a lovely art class and everyone was busy and drawing.
It was all petty and discouraging. I was on a high working with Red and the reading programs and helping so many people there in so many ways. This was a different people, for unknown reasons, many of the residents were angry and on edge. They were taking it out on one another, and on the staff, and on me. And that is a part of it, you either see that or get out.
I’m reading a book called “The Social World Of Older People,” and it is helpful to me. It reminds me of the difficult, claustrophobic, and very limited lives the residents are leading. The book, by Christina Victor, Sasha Scambler, and John Bond talks about aging, and also about the pressures on elderly people living in institutions: their helplessness, loneliness and isolation.
These people have good reason to be unpleasant at times. I am often angry over much less.
They have lost the opportunity for normal family and social engagement. They are heavily medicated. They hurt somewhere in their bodies almost all of the time. They have trouble walking or standing up from chairs.
They have lost their work and careers, many have lost spouses, they lost their neighbors, their participation in civic life, the opportunity to share their lives with siblings and grandchildren, their freedom, disposable income, ability to choose friends and activities, the right to decide their own health care, their mobility, their animals, and in many cases their health.`
How much loss can anyone suffer without effect or consequence?
And they suffer from loneliness and social isolation, twin ghosts that haunt the elderly.
They have experienced the loss of civic engagement, access to basic services, material resources, the right or ability to earn money, cultural activities and social participation. They have their rooms and their hallways and in good weather, the porch and the grounds.
But the boundaries of their lives have shrunk profoundly. They have known great loss.
It is my job, as it is the staff’s, to keep this in mind, and to be patient and reach deep for empathy, standing in the shoes of some of these people is no fun. Today, for the first time, i wanted to shout back, but I was never close to doing that.
It is important to say every day I also see acts of courage, love, community, compassion, humor and creativity. Every day I am hugged, thanked, appreciated, welcomed. There is no perfect life.
I see remarkable moments among the Mansion residents, acts of passion and energy and connection. I see it all the time.
And I see the impatience, frustration, anger and isolation all the time too. There can be a profound loss of purpose and hope, and the danger of encroaching passivity, the shock at being so dependent. These are working people, ghosts of their former selves. They are not used to asking for things.
It may not be easy to be around them at all times, but it is a lot harder to be them.
But it did get to me today, I crashed for the first time working as a volunteer. I was saddened by the cruel arguing over nothing, and depressed at my inability to do much good. So tonight, I’ll just feel it, and tomorrow morning, i’ll shrug it of.
We are going to have a two-day snowstorm, starting at midnight tonight, so I may not be at the Mansion for a couple of days. I will be calling the Bingo game Friday night, I will have moved on by then.
The authors of “The Social World Of Older People” help me see that the social world of older people has changed radically over the past 50 years, nowhere more so for those people housed for the remainder of their healthy lives in elder care facilities.
For all of human history, there was really nothing like these institutions in most places on the earth. America, for better or worse, has invited a completely different way to die and age, and none of it is naturally occurring.
We are only beginning to grasp what the institutionalizing of old age and death – and the much longer life spans modern science has given us – means to the people unknowingly and helplessly swept up in it. We are great at keeping these people alive at all costs by any means, but no one wants the responsibility of giving them good and meaningful lives to live.
The experience of elder care is sometimes lifesaving, a great relief, and sometimes so shockingly isolated that people cannot absorb it.
Many people in the Mansion are grateful to be there, and they know it is a Godsend for them, not a curse.
Their lives there are viscerally unnatural and that is what I have to remember when I have a day like this. My job is to fill some of the dark holes, And the Mansion residents do not need to be stereotyped as saints. No angels in this story.
This was a humbling day for me, it was a jolt, it whispered in my ear that I should always tell the truth, not a cozy version of it.
They are people, just like me writing right here on this blog. Sometimes you get the good me, sometimes you get the bad me. But you always get me.
I am not a God or a wizard. I can’t change destiny. Getting older is what it is, not one thing but many different things. I can’t wash away the fear or the darkness.
Only lighten a few hours of life every now and then.
I saw the most beautiful breakthrough since I started my reading program at the Mansion, using reading2connect stories and workshop books.
The books were written by Susan Ostrowski and Dr. Peter Diamond to help the elderly restore memory, find voice and read independently.
Until today, it was just me working with Joan and some others. It was going very well, but I wanted to go farther. And today, we did, much farther.
Joan has severe memory loss but has become deeply engaged in reading these workshop books. In elder care, people can become passive, are affected by the aging process, medications, and the sometimes restrictive life of the elder care facility.
Reading can be a great help to them, and when people suffer memory loss, they often give up on it. I hope this work helps revive memory and sparks a return to independent, not directed, reading.
At first Joan could not complete any of proverbs int he work book, now she is tearing through the books with humor, insight and confidence. Her stumbles don’t bother her, and she has changed before my eyes more than I might have thought. More and more, she is correcting my mistakes. Two weeks ago, I would not have imagined this video possible. Take a look.
Barb is a resident at the Mansion, an avid reader.
She often gets exasperated with Joan, who can be forgetful and sometimes drifts in out of the moment.
She loses patience with her, and can be abrupt, even cutting, though I doubt she means to be.
My own sense of Barb is that she is highly intelligent, a passionate reader – she reads all day – and is somewhat frustrated by the limitations and stresses of an assisted care facility. She misses controlling her life, and that many not be possible for her again in this life.
Barb sometimes pushes Joan like an impatient parent. Joan is profoundly sweet, she is always trying and my sense of her is that she mostly needs to be encouraged and supported. In my volunteer and hospice work especially, i have learned to accept people for who they are, and try to love them for who and what they are.
I have come to love Joan in this way, we have a real connection, and I admire and respect Barb as I get to know her.
For these reasons, I asked Barb if she would agree to work with Joan and I. As an avid reader, I thought she would connect with this idea, and she did.
Barb and I talked about being patient and supportive – she is very quick, and it is difficult for her to deal with a world that is often slower. She gave me one of her laser-like stares, but i knew she heard me. She wanted to do this work.
She said she understand, she cared about Joan and would be supportive of her.
I have a good relationship with Barb and we talk openly and easily with one another, even if she is in one of her legendary bad moods. And Joan and I have become close and connected, there is great affection between us and we always can communicate with each other.
You can watch the video and see how good this experience was for both of these remarkable women. This is significant for many reasons, one of the most important is that the reading we are doing is drawing in other people. That’s the big idea.
I think Barbara needed to find a way to show the compassion and intelligence that she doesn’t always have a chance to show. When they started reading together, she and Joan clicked in a way I had not seen before, and Barbara was encouraging and engaged. So was Joan.
For the first time, I sat mostly on the sidelines, jumping in occasionally. But it was them doing this reading..
One of the program’s goals is to encourage people in elder care to back away from passive activities like TV and re-engage themselves with the practice of reading, as good for the mind as exercise is for the body. in fact, reading is an exercise of the mind, doctors have found.
Ostrowski and Diamond mean for the people in elder care facilities to eventually read away from staff and volunteers and more by themselves.
This seems to be a step in that direction, Barb, who misses nothing and can be quite organized – she takes care of the parakeets – said she would be happy to continue reading and working with me and Joan. I’m not quite ready to leave them alone yet, but I’m looking for the chance
This is amazing stuff, and I am loving working in this way. We also had rehearsals for our skit, “Night Of Four Skits,” now scheduled for May.I’ll post a video of that rehearsal later tonight. Barb has joined our cast.
It is a wonderful thing for me to see Joan improve and restore some of her memory, it is an amazing thing to be part of it and see it happening. I will keep up this work.
I considered paying for the $3,000 training program meant to go along with these new books, but I have decided against that, at least for now.
There is just way too much going on in my life right now. Friday night, I volunteered to run Bingo Night. I have never played bingo in my life and have no idea how it works. It will be exciting to see.
If you wish to support my work with the Mansion residents, there are lots of needs to fill. This work is made possible by your donations. You can contribute to this work by sending your contribution to Jon Katz. P.O. Box 205, Cambridge, N.Y., 12816, or via Paypal.
Your letters to the Mansion residents are much appreciated (as are your notecards!). The Mansion residents who wish to receive your mail and messages are Winnie, Jean A., Mary, Gerry, Sylvie, John, Diane D., Alice, Jean G., Madeline, Joan, Allan, Bill, John K., Helen, Bob, Alanna, Bob, Barb, Peggie, Dottie, Tim, Debbie, Art, Guerda, Brenda, Wayne, Kenneth, Ruth. The address is The Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816.
