I think Ruth and Ken may be the Mansion’s happiest people. They are devoted to one another, they spend much of the day sitting on the sofa in the great room talking, and taking walks with one another outside.
They have been at the Mansion just a few months and have settled in beautifully. They seem so happy with one another.
Ruth told me today she has lost five pounds and expects to lose another 50 before some surgery she will undergo in August.
They both shyly asked me if I would consider taking a photo of the two of them before the surgery and make a print. She said she might need some new clothes after the surgery, I said I would be happy to help.
I said I would be happy to do that. I’m sending this print to my printer and will be honored to give it to them.
If you wish, you can write to Ruth and Ken c/o The Mansion, 11 S. Union Avenue, Cambridge, N.Y., 12816.
I had mixed results with my efforts to assist the memory-afflicted in the Mansion this week. There was little interest in the “activity” or “sensory” aprons I hoped would give some of the residents creativity activities during their sometimes long days.
My first “realistic” baby dolls, otherwise known as “reborn” babies. on the other hand, was an unequivocal success. Diane, frustrated by the lack of purpose or clarity in her life, loved her new baby without condition and absolutely. Her baby, which she named “Sue,” occupied her all day Thursday, and in the most calming, satisfying and focused way.
The baby seemed to give her both pride and purpose, as you can see from the video below. Diane received Sue on Tuesday:
“She’s a beautiful girl,” Diane told me today when I asked her about Sue, “she’s a very good girl and she needs to be loved.”
There is some confusion about the value of realistic baby dolls for patients with memory issues, Alzheimer’s or Dementia. Many caregivers find babies ease the burden of their patients by providing outlet for care, love, responsibility and purpose. The dolls are also believed to bring back happy memories of early parenthood, Diane clearly feels both needed and useful since she met Sue.
Some find it demeaning.
Before the doll, Diane was becoming frustrated, moving around in search of something to do, and for some meaning. Now, she thinks about Sue – is she tired, being loved, being heard? She feeds the baby regularly, changes her diapers, makes sure she is warm.
And there are questions to answer?
Should she come to dinner or stay behind in the room and rest. Reading through the literature, I’ve ordered a bassinet for Diane to put Sue in when she leaves the room, or wants the baby to nap.
The aides think that Diane is afraid to carry Sue around too much for fear she will get lost, or even stolen. The other residents have responded well to Sue, they seem to understand the need and the purpose. My sense is she may be wary of being ridiculed. Some of the residents can be tough that way. I think she’s not ready to show her much.
I visited Diane today shortly after her nap with Sue and this video of the two seemed to affirm the wisdom of her getting such a doll. I think she was lonely before Sue, she spent a lot of time talking to the parakeets, pushing her walker through the hallways. She seems quite focused now.
It was interesting, looking on Amazon, private websites and Alzheimer and Dementia sites, I saw many prices for realistic dolls at $1,200 and higher. I was startled – Sue cost $200 with a box of accessories – and I realized that these sites were reimbursed by insurance companies, which paid all or most of the high costs. Small wonder health care costs rise so rapidly. I wouldn’t even think of asking the Mansion to participate in that kind of purchase.
I did not find the doll demeaning or infanticizing to Diane. She is very happy to have Sue, this is so clearly something she needed. Come and see.
Somehow, in some way, it is fitting that we both begin our day tending to the manure piles left by the donkeys and sheep after a night in the pole barn. Spring is coming slow and hard this year, and before Maria goes into her studio and makes her art, and before I go into my office and write on my blog, one of us has to move the manure.
Maria has a special gift for it, I think on some level she loves to do it. She is my Willa Cather girl, a goddess of the prairie, and then an artist making magic. Somehow, it all comes together.
Joan’s World: Another in a series: Making art with Maria
I have come to love Joan, a Mansion resident struggling with severe memory loss. And she has come to know me, and I believe, remember and love me also.
It has become a kind of mission, I suppose, to enter this world and share it, to humanize and capture the extraordinary lives of the people who struggle to live full and meaningful lives without all or most of their memory, something so basic, something we take for granted, something that shapes almost every element of our lives.
We quite literally warehouse the memory impaired, it is required that they be locked up for their own safety and monitored continuously. Joan is fortunate to be in an assisted care facility where the mission is love and patience. She is well and lovingly cared for. But still, life is a continuous struggle for identity and meaning for her. The staff could hardly do more.
it is both wrenching and exhilarating. We keep people alive longer than ever, but we take no responsibility for the quality of the lives they lead, or the sometimes dreadful consequences of too long a life. In our world, almost no one is allowed to die naturally and without long suffering.
I think life is perhaps the most challenging in this way for the memory impaired, as it is often difficult for them to grasp what is happening to them.
Memory is the faculty by which the mind stores and remembers information. In fact, the mind itself is a magical storehouse of the information of our lives, our very identity. It can be said in some ways that to lose one’s memory is to lose one’s mind.
That suggests that people with memory loss are a shell, somewhat hollowed by illness.
That is not true for me.
I have been working with Joan for months now. I read with her, bring her books and stuffed animals, activity aprons, and today, at Maria’s very excellent suggestion, we brought her clay in an effort to respond to her repeated claims of being bored and restless, fo her clear search for meaning without memory.
Maria has a gift, and I believe I do also, for talking to the memory impaired, we seem able to get through, to hear and be heard. This is important to me, and a wonderful thing to share with her. Maria does not work in the Mansion regularly, she comes in from time to time to teach art, help call Bingo Games with me. She is known and loved there.
Joan and i see one another often, we yak all the time like school girls, we talk about old times, new times, hard times, and in every conversation, there are diamonds of truth and insight and awareness, you just have to listen for them.
It is a powerful and dramatic journey for me, and I learn from Joan every time I speak with her or see her, and am learning how to talk to hear, here her and communicate with her. Of all my efforts to talk to Joan, none has been more successful that the reading exercises we are doing together. She has no interest in the activity aprons I got for her, and the stuffed animals disappear, lost or tucked away in her closet for the day she returns home, a day she thinks will happen every morning.
In this therapy work, you learn quickly that sometimes you can help and sometimes you can’t, and there are some things you work, and some things you don’t. I never push the things that don’t work, I just let them go. I push the things that do work.
Maria and I came to the Mansion this afternoon with some clay, and Joan was eager to sit with us and mold the clay. We were happy with this project, we’re going back on Monday. Maria has emerged from her own shell in the past few years, she understands pain and confusion in a particular way. People feel at ease with her.
Maria, ever the artist, showed her how to hold the clay and feel it and shape certain objects.
Joan loves to sit and talk, and she loves to have something to do with her hands, she is forever looking for engagement and she often finds it in conversation. She loves attention. She is starved for purpose.
She has a deep and very active sense of humor, if she can’t always follow the words, she almost always reads the emotions and the feelings. I think she sometimes lives in a heavy gray cloud, punctuated by sudden bursts of sunshine and blue sky.
She can only focus on one thing for a while, perhaps 10 minutes at the most, and then her mind wanders off to another place. She loved working the clay, the loved the feel of it, she said it soothed her and calmed her. At one point (not on the video) she burst into song, and then remembered the encouragement her mother offered her for her art, for her working with clay, for her singing.
She remembered that everyone in her family was dead now, and she was alone. She seemed to recall the day she collapsed and ended up living in the Mansion, she remembered falling down and calling her dog and cat to her, she said they came. She does not ever remember or speak of the death of her daughter, who was murdered by a boy friend, except indirectly. I think it is not something she can bear to speak of.
She remembers her mother clearly and fondly, she remembers her encouragement most of all, and I see that Joan still loves to be encouraged, and soaks that up. She understands when people try to help her, she articulates genuine gratitude.
Joan is full of love and warmth. Sometimes, some of the other residents are cruel to her, impatient with her confusion and indirectness. She senses their disapproval and wanders the halls, a staffer always comes to her and comforts her and sometimes she sits in the office with the aides, she feels safe and comfortable there.
She says she only gets angry when people step on her or bump into her. But, she says, she is never angry for long.
She loves to see Red and admires him, she says he is “such a beautiful dog,” but she cannot remember his name or mine, or anyone else’s She seems to me acutely aware of where she is in life, and speaks of it often and indirectly, shrugging or apologizing for her confusion.
She has no special friends, really, an aide has to sit her at her seat in the dining room, and then walk her back to her room or to a sofa in the hallway, where she sits and watches people go by. One of my favorite memories of winter was standing at a window with Joan and listening while a snowstorm raged outside and she described the colorful flowers in the garden she saw just outside the window.
Joan is a poet of life.
I treasure the time I sit talking to Joan and listening to her, she has a vivid imagination and seems to come to life when making art. Today, talking to Maria, she make a cylindrical piece of clay and rolled it for me, I asked her to make me one for her study. She was pleased, then a few minutes later, forgot. The mechanics of conversation are different with the memory impaired, you go where the go, and do not try to lead them anywhere else.
I made her a clay statute of her mother, but she forgot what it was and we returned it to the block of clay.
But there is love there, and memory, and recognition. She is not a shell, she has not lost her mind or her heart or her spirit. Those things are very much alive.
As we left, Joan lifted her arms so that Maria could hug her. “I love you,” she said.”I love you too,” said Maria.
“Him, too,” Joan added, smiling, looking over her shoulder at me.
We invited Joan to bingo tomorrow night, she loves to sit and play Bingo on Friday night with the other residents. One of us has to sit next to her to spot her numbers when they are called. I’ll remind her just before the game.
As of this week, every class at RISSE has a new beginner’s digital camera that takes photos and videos. The three V-Tech Selfie Blue Camera all came with a memory chip. This model has been widely praised as an inexpensive and simply entry to photography, they cost $49 each and are a huge hit to the RISSE kids.
Every child has the right to develop their own culture, we are providing some of the tools to do it.
When families need food and clothing, the tools of culture and creativity often get left out. We are trying to fill some of those holes. We are not miracle workers, we are hole fillers. Now, the kids can capture their own images and stories, which will all be posted on a whit board on the school walls.
