This was originally published on the blog of the brilliant visionary nursing home reformer, Dr Bill Thomas. www.edenalt.org / travels-through-americangeriatricland.

Responses convinced me that what I was had to say had an audien've returned to write once again, this time of the past six years in der current

Travels Through AmericanGeriatricLand

I’ve made my way through seven nursing homes, six hospitals and twiveo long term acute care hospitals in a large metropolitan area over the past six years. Recurrent cellulitis in my lymphedema-afflicted legs took up the first three. Hypercapnia consequent to untreated sleep apnea felled me three years ago, leaving me with a tracheostomy, on a ventilator with a feeding tube. My life shrank to four walls and machines, even more narrow than before when I got to go home between infections.

Highlights of this six year passage? I’ve been on the floor of one facility with no vital signs, an escapade I don’t remember. I do remember trying to talk to the doctor on call that evening, getting chewed out for not going through the nurse who didn’t think anything was wrong and being told “f— you” and hung up on as I urged him to listen to me.

In another facility, a physical therapist came to tell me that for the past five days I could not move my legs on the bed when she asked, nor could I answer simple questions.  In a moment of clarity, I called 911 from a nurse’s cell phone as the facility’s phones were out of order. My CO2 level was 104 and the ER staff thought I had dementia.

Still another 911 escape landed me in isolation with acinetobacter baumannii flourishing in my lungs.  I remember trying to laugh when the suction machine moved from the crash cart to my bedside – “so you can feel secure, dear” – fell into pieces as the EMT tried to use it to clear my lungs but not much else.

Then there was the place where a CNA liked to dig her fingers into the back of my infected legs and tell me there were people there who didn’t like me. Her friend was written up for leaving me sitting on my bed with an oxygen saturation of 77, where a friend caught me just as I pitched forward on my way to the floor.

Seventeen doctors told me I would have a tracheostomy the rest of my life. Fighting my sixth multiple drug resistant infection, in desperation, I went outside the nursing home doctor circuit to a pulmonologist at Rush Medical School. The trach tube went into the trash can two months ago. All’s well and I’ll move to assisted living next month. I am 72.

Early on in this pilgrimage through AmericanGeriatricLand, I swore to myself that I would make peace with the losses it entailed, of privacy, of dignity, of control, of parts of my body and pieces of my life, by advocating not just for myself but for others when there was need. I’ve done that and will continue to do it. It has become part of who I am. That is another story.

Last fall I discovered the Eden Alternative, the Green House and Dr. Bill Thomas, bringing new and exciting ideas into my somewhat intellectually barren life. These resonated intensely with my own experience and broadened the concept of the possible far beyond what I could imagine based on my personal sample of nursing homes. Excited, wanting more, I cruised through Thomas’s videos, deciding that his presentation to the Sanford Center for Aging was the most provocative, frame by frame, of all of his YouTube posts.

Here were new ideas.  Newly articulated problems. Fresh ways to identify, conceptualize, problem solve things that were a part of my everyday life in the nursing home in AmericanGeriatricLand.

The compelling documentary Alive Inside, on Dan Cohen’s work with restoring memory in dementia patients using personalized music selections on an iPod, appeared on Netflix and YouTube at the turn of the year. This added another riveting story to my repertoire of things to think about while I sit on my bed day after day in a corner under a window

My room looks out on a long hall filled with dementia patients and staff who have no specialized training.  Every day I watch the prequel to Alive Inside.  Now I imagine how lives could be transformed with the intervention developed by Cohen.

One evening when the nurse had a meltdown, quitting later that night, and the CNA was reduced to shouting “SIT DOWNNNN!!!” I went out and sat between the two most vocal patients, who tried every three minutes to climb out of their wheelchairs and fall

We started talking. By then I had discovered Thomas’s work and it informed me as I felt my way. We spoke about loneliness, of dying here, alone, forgotten. About hearts torn with yearning for a real home; these two with almost no one in their lives who isn’t paid to be there. About never going outside and missing the fragrance of flowers and the smell of rain. And for much of that time they were neither yelling nor climbing out of ill-fitting wheelchairs. A new nurse came on, it was late. They were wheeled to their rooms.

After fifteen months in this facility I think they will be relieved to see me go, the elderly agitator, the aging provocateur.  Seeing how the visually impaired patients had little to occupy their time, I had a volunteer program ready to take off – prefaced with a short workshop at Lighthouse for the Blind for the volunteers. That was allowed to die on the vine. So was a proposed inservice for staff working with visually impaired patients. Cohen’s program?  The iPods will get stolen….

Find a couple of techie volunteers with laptops to help patients Skype family and friends too far away to visit, perhaps never to be seen again otherwise? Connection, a critical element often in short supply In a traditional nursing home. Nope, brilliant idea though.

Sitting on the side of my bed on the dementia floor or walking around with my tablet, I now beguile everyone I can into watching some of Emily’s Netflix and YouTube List – ten minutes of Alive Inside, the Eden Alternative Featurette, the Green House Nursing Home Alternative and selections from Thomas’s presentation at the Sanford Center for Aging.

I often mention medicare.gov/nursinghomecompare (contains inspection reports for every nursing home in the US)  and information on the www.edX.org class on the Harvard happiness project. And I’ll always hand out the ombudsman’s phone number. Those who are short of time may get a handwritten list …

No one is exempt – CNA’s, CNA’s in training and their teachers, Monday night volunteers with their dogs, patients, patients’ relatives, friends. It’s hard to unring a bell and a vision of good alternatives never hurts…

Two nights ago a bright young woman just finishing her LPN course work was watching Dr. Thomas’s Sanford presentation with me. We began to discuss his reconceptualization of elderhood and what elders have to give back.

She said to me, “I like stopping by to see you. You always make me think and ask questions, tell me things I don’t know. And I always have to look at least one thing up on Google after I leave. I love coming to your room.” I stopped, looked at her, realizing in that moment we had been elder and youth from the time she walked in. While discussing Thomas’s rethinking of aging we were, in fact, living it. Having been shut away from the world for so long and having struggled mightily to hold on to a sense of self stretching beyond the confines of dreary beige walls, that realization was a gift to tuck in my pocket as I prepare to leave and return, older and somewhat wiser, to the wider world.

PS. Don’t get me started on the message the food service I’ve encountered gives to elders. Just picture 4 fried fish nuggets, 12 tater tots, 14 long beans pretending to be a salad, 1/8 cup barbecue sauce and “juice” made from powder to drink. It is certainly not about eating to live well. No, I live in a three story food desert – just try to find fresh fruits or veggies on my tray.  I call it food porn.

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Barbara Smullen

March 4, 2015 11:01 pm

Oh, my God…is this tragic story for real ? I know it is terrible out there in many (nor Eden) homes, but this is incredible…it is no more than a miracle that this incredible woman is still alive, and has enough love of life and energy to step out as an advocate….we need to look at violations of laws in facilities such as she has experienced and, miraculously, survived…

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Emily Hodges

March 5, 2015 5:11 am

Yes, Barbara . Every word is true. There are many experiences – some difficult, some quite dangerous – I have not written about. When people at edenalt.org asked if I would like to write something the only answer possible was “yes.” It gave me a way to reach beyond the confines of these three floors and four walls out into a bigger universe. I’ve a post graduate education from Berkeley, speak six languages and was a US diplomat . And this is what happened to me. How can I not raise my voice

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Jennifer Corbett

March 8, 2015 11:48 am

Thank you so much for sharing this. I’ve worked as a travel occupational therapist for nearly 10 years now, and have witnessed similar inhumane living conditions and suffering all over the country. Some places try harder than others, but none of them would I wish upon my family, or any elder for that matter. I’ve tried initiating various programs at nursing homes, such as gardening, music, yoga, but end up burnt out when I do not receive any support from management. The nursing home owners that cry poverty when asked to increase staffing, redecorate, remodel, and provide access to the outdoors, should be fined for not providing adequate living conditions. I would always be amazed when the Department of Health would come for their annual inspection, and the skilled nursing facility would pass, when the residents would be living in conditions that prisoners would cause riots over. (I wish someone would make a documentary demonstrating how prisoners have more rights than our elders!) It would be a great service to the residents, if those nursing homes were shut down, and the residents absorbed into higher quality homes. I felt so angry one day, I wrote a few pages of a novel loosely based on roommates I came to love, plotting their “great escape”. Unfortunately, writing is not one of my talents, so the novel still rests at 5 pages. Anyway, again thank you so much for sharing your story and keep writing and inspiring. I plan on printing your story out and sharing it and enlightening as many as I can. I’m hopeful that your suffering will not be in vain!

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Emily Hodges

March 8, 2015 8:10 pm

Thank you Jennifer, for your kindness and compassion to others. Here is another chapter to the story. I rolled out of bed onto the floor two nights ago, sitting on the bed waiting for help to lie down, when I some how rolled out of bed and hit the floor, snapping the top of the bone at the shoulder. The humerus was badly fractured, snapped through. I was sent back to the nursing home wearing a sling with a wide band around it to stabilize my arm with orders to see an orthopedist on Monday or Tuesday. I was given a prescription for heavy pain medications to take back with me. I finally got the script. It’s been very painful. The heavy pain meds have left me sleeping sitting up in the bed without my bi-pap machine that keeps me from having sleep apnea. My nurse has tried to contact the nursing home doctor every hour for the last several hours to get an order for daytime use of the bi-pap so I don’t have another episode of rising CO2 which is what got me the trach the first time and lying on the floor almost dead twice. He’s not calling back. If I fall asleep, they are not putting me on the bi-pap and because I am on heavy duty pain meds, I am at higher risk of not breathing and the CO2 rising. I am now waiting for someone from the nursing home to call back to order the use of the bi-pap. I try not to fall asleep in the day time, but I also need the pain meds, which puts me at higher risk of CO2 as well as falling out of bed again

I truly appreciate your concern and I’m getting tired of being the one who spots the problem when it should have been a nurse to realize I needed the bi-pap anytime I fall asleep.

I will try to keep writing somehow, though I’m not sure when or how. I’m having someone else type this for me now as I dictate because of the pain in my shoulder and an arthritic hand. That makes it difficult to type on a tablet with no table to stabilize it.

Regards,

Emily

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Jennifer Corbet

March 8, 2015 10:22 pm

Hang in there Emily, rest and write when you’re feeling better. So sorry you are going through this. Maybe listen to some relaxing music to get your mind off of things and keep stress levels down so that you can heal. And while your arm is healing, maybe have someone help you to use voice control on your tablet instead of typing. That’s what my father does, having had his first introduction to computers at close to 70 years old. Works great for him. He even texts me now. Hope that doctor gets in touch soon, or better yet, request a change in physicians! Maybe when you get your strength back you can start a blog. I’d definitely be following you and rooting for you! Feel better and make sure you’re wiggling those fingers to keep the swelling down and to maintain functional use of your hand while your shoulder is immobilized. Hope to hear some good news soon!

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Anne Johnson

March 10, 2015 11:11 pm

 

Emily, I’ve been there on and off for the last year by phone. I get so mad sometimes listening to what they say to you while I’m on the phone. A good deal of the time it’s like “Why should I worry? As long as I don’t see her get bedsores on my watch, it doesn’t matter because they’re all here to die.” That’s the attitude that gets to me. That and simple ignorance from people who weren’t listening in class. I still remember you told me about the CNA who thought that, having dropped the cannula from your trach on the floor, to clean it all she needed to do was wash it off in sterilized water and that would sterilize the cannula. The difference between “clean” and “sterile” does not seem to have made it into school–even “Aide” school. People continue to amaze me with what they can ignore or forget. “unsurpassed” does not mean better than anything else, it means supposedly nothing is any better than this.

I’m getting off subject. My mother died in a nursing home and some of what goes on is really mismanagement under cover of keeping expenses down and making sure they get it right. Patients wait for 1-2 days after being prescribed to get medication because they can’t keep it in stock and it takes a while. Patients tell the nurse or doctor which things they can’t take (my mother told them Levaquin would not clear up her UTI and the doctor, who comes in maybe once a week, went ahead and prescribed a second course of the same stuff). “Real” doctors learn to listen to the patients; sometimes people do know what they need.

Nursing homes apparently don’t have a need for emergency medications. The fact that Saturday you were told to see an orthopedist on Monday or Tuesday and sat around for five days.