Everyone at the Mansion had Valentine’s Day Cards to read and open, and these messages are so loved and appreciated. More than anything, they help the residents feel known and connected. Here, Guerda, Sylvia and Brenda read their messages. Sylvie reads each letter carefully and works hard to answer each one, she says the letter writers are her cherished friends.
Sometimes she has trouble getting the addresses and zip codes right (might be good to send her a stamped, self-addressed envelope if possible), and I offered to help her write them.
She said she would consider that, but she considered every letter she get a prayer, and that’s how she would see the ones that never made it to the right address.
It was a great gift to send messages and cards to the Mansion residents, everywhere I looked people were reading them and sharing them. The room was full of connections and yes, love. Thanks.
You can write to the Mansion residents c/o The Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816. The updated residents lists is as follows:
Winnie, Jean A., Ellen, Mary, Gerry, Sylvie, Diane, Alice, Jean G., Madeline, Joan, Allan, Bill, John K., Helen, Robert, Alanna, Barbara, Peggie, Dorothy, Tim, Debbie, Art, Guerda, Brenda, Wayne, Kenneth, Ruth. And thank you.
If you wish to donate to the Mansion Support Fund, you can do so by sending a donation to Jon Katz. P.O.Box 205, Cambridge, N.Y., 12816, or via Paypal, jon@bedlamfarm. If the money is meant for the Mansion, please mark that on the check so it will get to the special account right away. Thanks.
Today, right after the Mansion’s Valentine’s Day lunch and before the Valentine’s Day mega-party, Joan and I had our third experience reading together as she works to rediscover some of her memory.
I was working with the Read-Aloud Word Games from reading2connect, a pioneering publishing company whose books do not treat the elderly as children, or helpless beings, but as prideful adults struggling with memory and eager to keep reading in their lives, or perhaps bring it back.
The Mansion is a Medicaid Elder Care Facility with severely limited financial and staffing options, they struggle mightily to both entertain and stimulate their residents.
Susan Ostrowski and Dr. Peter Dixon at reading2connect believe their books can help revive memory and voice, and inspire elderly people towards reading on their own and with one another.
I have purchased a dozen or so of their books, and it has been an exciting and transformative experience for Joan and for me. I asked Joan to work with me because she has experienced memory loss. They have been good enough to send me some books without charge.
i don’t wish to overstate things, there is no known cure for memory loss and I do not work in miracles or grandiose ideas, as a volunteer, I simply try to fill the holes in the lives of the Mansion residents, many of who feel abandoned by the rest of society. They are correct.
I believe in the small things – getting bras and new underwear, sweaters and jackets, winter caps and scarves, books and carpets, air conditioners and fans, raising funds for parties, special lunches and outings. I work with a group of angels from all over the country, we call ourselves the Army Of Good, and we try to do good rather than argue about what good is.
We are skilled at keeping people alive beyond cost or reason, but shameful at considering how they will live fulfilling lives when many have lost everything they ever loved in life. It is very easy to become sluggish and disoriented in even the best elder care facilities, there is often little to stimulate their minds and curiosity.
They can begin to lose interest in the world, and drift towards the TV, which is on in many rooms all day.
They believe the world no longer cares about them. They rarely see anyone aside from the staff who is not their age.
When I began working with Joan a little more than a week ago, we started using a workshop book called “Read-Aloud,” read the first worst of a phrase like “Practice Makes ____” and I’d wait for Joan (or a couple of other residents) to finish the phrase – “Perfect.”
Joan was confused and disoriented at first. She struggled to finish most of the phrases, I wasn’t sure if she grasped what we were doing. Today, she seemed almost a different person to me. She was eager to do the reading exercise, she knew instantly what I was talking about, she sat down in the same seat we used for our first work together.
She got every phrase question right but one (I got two wrong.) One question was a trivia question: “God created the world in how many days?” She paused a bit on the answer – here I need to be more patient – and i prompted her by answering “seven days?”
She started to say six, but was led astray by my prompt. She was right. God created the earth in six days, and rested on the seventh. My feeling is I have to convey faith in her for her to have faith in herself, it has been a long time since she has been asked to revive her memory, I think.
We have established a strong bond, she trusts me and I trust her. We have faith in one another I think, that chemistry matters.
There was an enormous difference in Joan’s demeanor. She was eager, excited, proud. She had give up herself on her ability to remember things, but when she sat down yesterday, she was confident and proud of herself. Her eagerness showed through. This was fun, and satisfying. Some days, Joan recognizes me but does not remember who I am. Today, she asked if I could come tomorrow and do some more reading.
I asked Joan if she would agree to play a leading role in one of the four skits we are performing at the Mansion in April. She said yes, if I would be there to read it with her, her eyes are poor, she said. So we’re doing it together.
I have no idea how far this can go, if anywhere. We are at a pretty amazing place right now, and I hope this will always feel successful for her, a triumph, because it is.
Come and see. Tomorrow, we are have a first rehearsal for our “Night Of Four Skits.” I’ve lined up the cast – Peggie, Joan, Madeline, Sylvie and Allan.
I was poring over the reading2connect website today looking for new books to buy for the Mansion residents, and one caught my eye, I had somehow missed it before, it was called “One Set Of Four Skits,” and it cost $85. This is a set of four skits.
Each skit has two speaking roles. There is a separate booklet for each role, so there are eight booklets in all. The skits were written for seniors bh BI-FOLKal Productions, who agreed to let authors and researchers Susan Ostrowski and Peter Dixon make some minor adaptations to increase readability.
Older adults, say Susan and Peter (yes, we are becoming friends) very much enjoy reading and listening to their friends and peers read. The skits – their titles are “The Present, The Physical, The Couple, and Ready Or Not, Here Comes Winter, were chosen because they are relevant and humorous.
“With these skits in hand,” say the publishers, “our readers’ innate senses of humor and understanding of what acting entails become evident to all.”
I am excited about these skit books, I intend to produce these skits and gather a cast and present them at the Mansion in the Spring. I’m trying to corral Maria into joining me, she loves the Mansion work. I was a producer once – Executive Producer of the CBS Morning News, and I hated it, but I am overjoyed to be producing these stories.
I talked to Morgan Jones, the Mansion Director about the four skits today, and she was also excited. She said she loved the idea and added that she’d invite all of the families of the residents and the community as well.
We’ll stage it in the Mansion Great Room, I’ll go and start recruiting a cast tomorrow.
The skits are relevant and simple. “The Physical ” is about a physical exam, a very relevant subject. It opens with a doctor saying “For a man of 60, you’re in remarkable shape.” The doctor examines the patient, and adds, “My goodness, your father must have lived a long time.”
I have four residents in mind, they are hams, I think, and they all have a sharp sense of humor and irony. They are not afraid of performing in front of other people, and their egos are strong and eager.
It’s interesting, the Mansion is a Medicaid facility, most of the residents are well past 60, but they retain their humor and curiosity. They are extremely self-aware. It is easy to underestimate them.
Life on the edge does not allow for much self-delusion, these people know who they are and where they are. They have all seen a lot of life, and they all know where it ultimately goes.
But I am surprised – thrilled actually – to discover with these simple but very well crafted books – that their ambition to create and their need for stimulation is very strong, even if submerged or set sometimes. I realize I have to go inside to get it, and these books are an effective tool.
These people are profoundly distracted with survival – they worry about money, health, soap, clothes, food and family.
What I am learning is that most of the residents are very eager to read. They feel they have lost their culture and most of the things they have loved. They have mostly given up on the idea that it is possible to get their culture back. It is difficult, I have seen, but it is possible. I’ve seen it happen several times this week.
I’ll be able to support the cast, they can read from their scripts, they don’t need to memorize the words unless they wish, although I will certainly give them the opportunity to try. My goal with this work as in my therapy work with Red is a zero tolerance for mistakes.
Just like no dog can ever jump or growl or bit, nobody like me must ever make anyone feel bad, or ridiculed or pressured or exposed in any uncomfortable way.
More than anything, the hope is to re-discover the joy and healing power of reading. I believe that is possible.
More than anything else, the seniors I am working with have lost confidence in their memory and reading skills. Building confidence is the first step, it is important they succeed, and not be seen to fail, as many expect them to. These institutions are not generally created or funded or able to promote creativity, they are, by regulations and economics, focused on safety and comfort.
Those things are important, and nobody is giving them the money any time soon to do much more. Their funds and reimbursements are being slashed every day.
The casting challenge is whether or not to cast people with severe memory disorder. Perhaps someone – me or Maria – can be with them and help them read their lines if necessary. We’ll have to figure it out.
In any case, I am going full-speed ahead to produce a”Night Of Four Skits” at the Mansion, we’ll pick a date this week. I might want to hire a band to play some music and create a bit of a theatrical air. Maybe have some of the residents act as ushers and ticket takers.
I much appreciate the work and support of Susan Ostrowski and Dr. Peter Diamond, they are committed to using books to revive memory and strengthen voice in elder care facilities. Sacred work, they have donated several books (I’m going back tonight get the Robert Frost booklet) and they have communicated regularly with me. I am grateful for their encouragement.
“We enjoy witnessing your inquisitive mind at work and your discoveries as they unfold,” Susan wrote me tonight. “We’re learning quite a bit from your writings.” That is kind and generous, but the actual truth is that it is me who is learning so much from their writings.
I think the genius of these books is their simplicity and relevance, they seem to speak in the same voice as the elderly, even those with memory issues. This simplicity is not something I would ever have thought of, it can sound juvenile, but it isn’t. And I love the idea of liberating reading from staff or people like me. In a sense, it reminds me of my parenting. The good parent is one who is no longer necessary at some point, not the one who clings and keeps everyone close.
Ultimately, they will not need to be read to.
They need to read to themselves and one another. I’m an enabler.
We’re not seeking miracles, nobody can really turn back the clock, especially not the health care industry, but we can slow it down a bit and return some pride and dignity and stimulation to the lives of people living in elder care.
Stay tuned, the “Night Of Four Skits” are coming to town. I’ll get some posters printed and post them around town.
Army Of Good: Decorations and pennants and posters are welcome, so are small donations, this won’t cost much (except the band.) You can send decorations (date coming later) to the Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816. You can send donations to me at Post Office Box 205, Cambridge, N.Y., 12816 or via Paypal, [email protected].
If you wish to write to the Mansion residents, your letters and messages are precious to them: Same address as above, the residents are Winnie, Jean A., Ellen, Mary, Gerry, Sylvie, Jane, Diane, Alice, Jean G., Madeline, Joan, Allan, Bill, John K. Helen, Bob, Alanna, Barbara, Peggie, Dorothy, Tim, Debbie, Art, Guerda, Brenda, Wayne, Kenneth, Ruth.
Here’s the way my poetry workshop works. Once a month, we meet in the Mansion Activity Room, the workshop usually draws about 15 people. We choose a topic – today it was “Poetry In A Storm.” We ask people in the room to offer their ideas about the poem and today, they all wanted a poem that rhymed.
When, everyone has added their ideas, I talk to them, read them some poems I have chosen, and take the poems home and pull them together. Julie Smith, the Activities Director at the Mansion, writes them up on the board.
We struggled to rhyme today, but the feeling behind the poem was strong and clear. I can pull it together.
I hope we can publish these poems in book form, the way we did the Mansion book, “Tales From The Mansion.” This day was special, the biggest storm of the season was raging outside, and I felt strongly drawn to get there, which I did, although a bit late. I’ve never seen the roads in my town so empty or slick, people know how to handle snow up here.
I was so glad I went, I was right. Even on cold and wet days, the residents go outside for short walks or to sit on the porch. They were feeling landlocked today, and I think a bit lonely.
The poem about love circled around, there were stories about the heart and lost loved and lost loved ones, and love left behind. This one is going to be tough to pull together, but it meant a lot to the people writing it together, I am surprised at the deep love of poetry some of the residents have.
Madeline, Tim, Allan, Peggie seemed the most interested in poetry, I think they would love any poets sharing their own poems or their favorite poems with them. You can write them c/o The Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816.
Joan, standing in front of the fan, which she loves to do.
Yesterday, I had one of my most powerful and exciting experiences at the Mansion, a small miracle, it seemed to me.
As some of you know, I’ve begun a one-on-one reading program at the Mansion designed to revive memory and strengthen voice, it’s called reading2connect, and it was designed by two researchers – Susan Ostrowski and Dr. Peter Dixon – who believe their books can help elderly people with memory loss read again and reclaim some of their memory.
I have been working closely with the very creative and whimsical Joan at the Mansion – she has severe memory loss – to write poems, paint and seek out her memories. Researchers believe memory is never lost, it is just not always possible for the brain to find it.
The books are not presented as miracle cures, but they produced remarkable and very poignant results with Joan in just one day. “We create books,” say the publishers, “for seniors with memory challenges. Our books are highly readable, yet retain the integrity of adult literature.”
They speak the truth, I think.
Joan is a sweet and loving spirit, but most days, she can’t sustain a conversation for more than a few seconds. She always greets me with a hug and a kiss on the cheek and thanks me for coming to see her.
She knows me, yet does not know who I am or what my name is. She loves dogs, but cannot remember Red’s name or whose dog he is. Sometimes she asks me me if I have come to the Mansion to sell him. Sometimes, she stares out and the snow and tells me the flowers of Spring that she is seeing.
She does not, to my knowledge, know anyone’s name at the Mansion, she is always in motion, moving from one place to another, she believes she is going home every morning, and then forgets about home. Her room is bare, because she packs everything she owns each night, to prepare to go home.
She is one of the warmest and most loving people I know. Yesterday, I sat down with Joan and one of the reading2connect workshop activities books – the “Read-Aloud Word Games.” I start a well-known phrase and the listener finishes it, as “Practice Makes ____” or “Two Wrongs Don’t Make A ____.”
Joan can rarely finish any sentence, but she was eager to sit with me and work with the book, and she quickly grasped the idea and was eager to try reading with me. She shocked me by getting all but two of the workshop answers right, and when we went back over the book again, she got them all right. I could see her confidence rise, and I could also see that her memory was very much there, she just had trouble accessing it.
The structure of the book and the interaction with me gave her a structure she could work with and she was proud and delighted that she recalled so many answers. I messed up more than she did.
I think the video shows Joan finding her memory, and also her pride and delight at succeeding. It is a very painful thing to lose memory, and a miracle when any of it is recovered. I apologize for my sunglasses in the video, I had laser eye surgery in the a.m. and couldn’t see without them.
I encouraged her throughout, occasionally touching her arm. I deliberately failed to answer some questions, so she would feel equal to me, sometimes superior by saving the day. If she struggled, I stepped in quickly to offer a clue or even an answer, I did not want her feeling as if she failed, it wasn’t a school test. I wanted her to succeed right away, and she did.
I ordered several additional activity books last night from reading2connect and I’ll return to the Mansion this afternoon. I had some similar success with Diane, who got most of the answers right also but was distracted by Red.
I should be careful to say that no one, least of all me, is suggesting memory loss can be miraculously recovered, and the books do not promise that. But I have long believed it is possible to revive memory and exercise it in ways can bring the elderly back into reading and access more of their memory.
As I understand it, that is the premise and purpose of these books.
Memories are all we are, in some ways, and the loss of memory is the eradication of the soul, humiliating and profoundly discouraging. Joan was as happy and focused after our work as I have ever seen her, she was pleased with herself and proud, rather than frustrated and lost.
It feels like reaching into burnish the soul, and bring it into the light a bit. You can see the video and watch the progress Joan and I made yesterday, the first time we worked together to try to restore her reading. This afternoon, I’m going to ask her to read from the “Birds” book, she has not been able to read for some time.
I am excited beyond words by this work – several other residents have asked to sign up – and plan to order even more books from reading2connect. I will share this work with you. So far, the books have cost about $200.
If you wish to write Joan, me and members of the staff will read them to her. I also hope to bring this program to Bill, who has been struggling to read again after his stroke, and Diane and Sylvie.
If you wish to write to any of the Mansion residents, you can send your letters and photos and messages c/o The Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816.
The names of the residents who wish to receive messages are Ruth, Kenneth, Wayne, Brenda, Guerda, Art, Debbie, Tim, Dorothy, Peggie, Barbara, Alanna, Bob, Helen, John K., Bill, Allan, Joan, Madeline, Jean, Alice, Diane, Jane, Sylvie, Gerry, Mary, Ellen, Jean, Winnie.
Thanks for your support. If you wish to contribute to the Mansion work, you can send a donation to The Mansion Fund, c/o Jon Katz, 205 State Route 22, Cambridge, N.Y., 12816, or via Paypal, [email protected]
This feels quite wonderful to me, I’m very excited about it.
