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Reporter's blog: The reality of hospice care

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This is an addendum to the profile of Michele Weinstein. Annemarie wanted to provide an extra glimpse into the life of someone living with a life-threatening condition, as well as information about home health care. This is also reflective of two reporter's takes on one story. 

This, today, is Michele W. Weinstein’s world.

Her hospital bed, adjustable if the pain gets bad. A copy of Gibran’s The Prophet, close at hand. The laptop on which she is writing her next book. Stuffed animals, adding whimsy. The caregiver, bustling around, making sure Weinstein is comfortable. Weinstein’s son is downstairs working; he’s there if she needs him.

The bed, surrounded by mirrors, reflecting the harsh reality of illness and everything we do to cope with it.

Weinstein has gone back to her maiden name, but she is perhaps better known here as the storyteller Grandma Michele, and as Michele Schuchman, owner, with her then-husband, of the Wagon Wheel (later Michele’s) Restaurant in Callicoon. She created and sold award-winning sauces. She volunteered for causes and told stories to hospitalized children.  There were puppets and costumes and dancing.

“Don’t have fights, then you get pain.”

And now her life has expanded to include Stage four cancer, metastasized from breast cancer first diagnosed in 2016.

The cancer story is chronicled on her blog, allaboutgrandmamichele’sblog, but the short version is this: Tumors found in 2016, followed by a pre-planned tour around the country. In 2017 she had surgery and radiation, and in summer 2018 found that the cancer had spread to her bones.

“I do not fight the cancer, I do not do battle with the cancer. I live with it, the active cancer... we’re all in together in this body.” She steps into storyteller mode, talking to her cells and the cancer, sounding motherly.  “Don’t have fights, then you get pain.”

Her days are still full, with trips to the doctor, visits from hospice, resting and reading and writing, self-treatment. Trained in energy healing and hypnotic regression, Weinstein is using the techniques on herself now. “I use aromatherapy and energy healing and self-hypnosis,” she said. “I never was into drugs.”

Now, “I leave the pain, I go somewhere else. I put these blinders on,” and she raises the eye covers, usually used  to block out light while sleeping. “What I say is, ‘Take me away somewhere.” Sometimes there is a light. “It took me to the beginning of time. It was magnificent. It was lights, moving together… You go into what your mindfulness needs for you. It’s wherever you want to go, it’s freedom.”

“I leave the pain, I go somewhere else."

And she still holds on to the person who was, the woman who would give of herself, whose professional site is full of testimonials from people whose lives were changed by her. “Giving always made me feel good and confident,” she says. There are still opportunities to give, even if you spend much of your day in bed. You just have to seek the possibilities out. “I believe I’ll be able to cure myself, and I’m getting all this help to help me to do it,” she says.  What does she mean by cure? “Love.”

It isn’t perfect. There is fear. Or anxiety, apparently wrapped around the needs of a life that goes on despite illness. There is paperwork to fill out, caregivers to interview, the bureaucracy of illness to work through.

One night recently, Weinstein said, she began to go into a panic. “I wanted to run away, to get my keys, get into my car, and run. I went downstairs with my keys, took a deep breath and tried to calm the frightened child within me.”

She pulled out her copy of The Prophet, by Khalil Gibran, “and I read out loud to myself.”

Her imagination has helped, she says. There was denial too.

At first, “I walked away from the recommendations,” she says, meaning “the cancer conveyor belt” of surgery, drugs, radiation, chemo.

So instead she took the trip. It may have been planned but Weinstein could have postponed it for surgery.

It’s impossible to tell if delaying surgery led to the cancer spreading. Perhaps it doesn’t matter. Perhaps there is only now. And this is now: She talks about embracing the practical reality of loss. We take a walk, touring the main floor. The house is full of mirrors, and as Weinstein makes her way from room to room, it reflects her over and over, images rippling as if we’re underwater. She isn’t bothered that the Michele shown here is not the costumed, dancing Michele she once was. “I love this body,” she says, leaning on the walker.

For several years, she competed to be Ms. Pennsylvania Senior, winning runner-up. There are certificates on her wall and videos on YouTube. She is dancing, whirling and laughing. In 2020 Weinstein wants to compete again. “It will be a spiritual dance, an interpretive dance…2020 will be the year of no hospice, no home health care, and I will dance.”

If you want more information about caring for a loved one, or if you know someone in need of care, contact the following:

In Sullivan County, NY

For long term care services, Sullivan NY Connects, 1800/342.9871 or 845/807.0257

For hospice: Hospice of Orange and Sullivan Counties, Toll Free: (800) 924-0157

In Wayne County, PA

Wayne County Agency on Aging 570/253.4262

Wayne Memorial Hospice Program 570/253.8431

If you are interested in becoming a professional caregiver, Sullivan BOCES offers periodic training, and agencies such as Wellness Home Care in Goshen train employees as well. Home health agencies that serve Wayne County can be contacted for more information.  

 

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