“This is their home.”

We say this phrase a lot when referring to residents of nursing homes. It is a sign of respect, meant to hold in check the natural impulse to treat the nursing home as a place of work or a typical hospital.

It’s the reason we knock on doors and ask permission to enter resident rooms. Or why we accommodate cumbersome decorations to make the living space more homey.

Many facilities continue to allow smoking (despite the health risks and stigma) because of this creed.

And yet, for the majority of residents, this phrase is only meant to apply for a short time. Many reside within nursing homes on a limited basis, temporarily occupying a bed until they can meet their physical therapy needs. In this sense we want them to feel at home, much as a hotel seeks to create a “Home-away-from-home” atmosphere for its guests.

Some patients become long-term residents when they can no longer live independently at home. For these folks, their stay may last for years, resulting even in the sale or forfeiture of their previous residence to pay the hefty nursing bill. Hence, the nursing facility becomes a new home for them, following on the tail end of decades of independent living. This group often struggles to accept their new digs, and so any sign of respect for their situation is usually welcomed.

For a select few patients, though, the nursing home is not new — it very much is and always has been their home. Some have spent the majority of their lives within institutions of one kind or another, and the nursing home is just one more bureaucratic shelter they happen to reside within.

This is especially common with certain medical disorders, such as severe cases of multiple sclerosis or lifelong neuro-developmental delays. Huntington’s disease, in which physical and emotional functioning erodes during early-middle adulthood, is another example and can be particularly tragic as the patient is so young and retains cognitive awareness of what is happening.

When a debilitating disease strikes and community life cannot support the patient, then nursing home placement is a common option. Diseases care not for concepts like “fairness” or “age,” and as a result many young adults find themselves trapped within an institution that was not designed for them.

In my work as a psychologist within nursing homes, I often have the opportunity to interact with these patients, sometimes just as they are arriving, and sometimes scores of years into their stay. These people live in an alternate reality, passing each year not as prisoners but not as free agents, adapting to and attempting to thrive within the artificial environment they were placed.

Think back over the last ten years of your life. All of the experiences you’ve had, the people you’ve met, the ways you’ve grown. Throughout that time, other people were living parallel lives within healthcare facilities, experiencing the same seconds yet with wholly different experiences.

Such individuals who have grown old in group homes and nursing facilities are testaments to the resiliency of the human spirit. One particular patient comes to mind who had made a nursing facility her home for most of her adult life.

Her story is melancholic, uplifting, and ultimately tragic.

…..

My patient (Let’s call her Lucille Ball) had crippling multiple sclerosis. She spent most of her time lying in bed with her cell phone within reach. If nursing staff were available to reposition her, she could watch her television. More often than not, there were not enough staff available to move her, let alone return her to her resting position when she got sore.

She always had a joke ready for when I entered her room.

“Dr. Penn, what did one toilet say to another?”

“I don’t know, Lucille, what?”

“You look flushed.”

She spent much of her day staring up at the ceiling, thinking…Probably about knock-knock jokes.

Lucille knew all of the staff by name and temperament. Due to her disability, she was wholly reliant on their help and schedules. If one was having an off day, she had to deal with it. She was smart enough to keep her cell phone handy so that she could call and report abusive behavior, and she made that right very clear to her revolving door of caregivers.

As few patients came by to visit her, Lucille made friends with the nurses and aids. When they left the job or were fired, she felt it and yet could do nothing.

When she had minutes on her cell phone, she would call her sisters. She would catch up and ask after her daughter, who had special needs and lived at another facility.

If Lucille had money leftover from her monthly Medicaid allotment of $50, she would daydream about what restaurant takeout food she would order. For at least one meal out of the 90 served each month by the facility, she could choose what she would get to eat.

When I entered her room, I knew to be prepared for more than just mental health therapy. I became enlisted as part interior decorator and part aide, tasked with rearranging things that Lucille couldn’t manage. She knew she had to take advantage when someone was available to help, as the next willing soul may be hours or even days away. I was happy to do so.

“Dr. Penn, why were the fish’s grades bad?”

“I don’t know, Lucille, why?”

“Because they were below sea level.”

At times, the loneliness and monotony grew to be too intense, and Lucille would request to be sent out to the inpatient psychiatric hospital. She knew that if she said the right thing to the right person, then she could be placed under a mandatory hold for at least three days — a time that she cheekily referred to as her “little vacation.”

Apart from the change of scenery and targeted treatment for clinically significant depression, Lucille claimed that the psych hospital had better food.

She once apologized when I visited her, stating she didn’t have any new jokes for me. I told her that it was perfectly all right and that she didn’t need to have jokes prepared for our sessions.

She said, “Everyone does so much for me, and I can’t do anything in return. But, I can tell funny jokes.”

“Corny jokes,” I corrected her, and she laughed.

So, I told her a bad joke of my own: “Why did the mushroom get invited to all of the parties?”

“I don’t know, why?”

“Because he was such a funghi.”

We traded jokes for each visit after that. Though I never directly asked, I hoped that it gave her something to look forward to.

Thus was her life and how she lived it. She had been living within the facility (or one just like it) for over twenty years before I started working with her.

The majority of my time living with all of its tiny episodes — completing my postdoctoral residency, marrying my wife in a private ceremony on Mt. Rainier, studying abroad in Rome, buying my first car, and countless other privileged adventures — Lucille had also been surviving, studying the cracks in the ceiling and listening to The Price is Right.

It’s enough to make me question at times whether there is any such thing as fairness.

One day, the nursing staff informed me that Lucille was in a very bad way. She had received news that her daughter had passed away unexpectedly, and the news had crushed her spirit. I was there as a therapist and friend to help her process her grief.

But, understandably, something had permanently and irrevocably changed inside of her. She wanted to be with her daughter, and though she remained resilient until the end, she passed away within two months of receiving the news.

Sometimes life can be mean and cruel. And sometimes it can be merciful in its way.

…..

The above is not meant to cast judgment or to invoke pity. I think about Lucille often, and I remember her as strong, adaptable, and highly capable. At times I want to curse Nature or modern medicine for allowing such debilitating diseases to continue. Yet, Lucille made the best out of the bad situation she was placed in. No matter how others may view them, she had things in her life that were important to her that were worthy of her time and devotion.

In some ways, her life seems just as real, if not more real at times, than my own. Her story has a truthfulness and earnestness of quality.

I think she may be my favorite comedian.

…..

Note: The above qualities of persons and settings have been altered to protect individual identities. Characteristics from multiple patients and nursing staff have been combined, though the content and overarching message are true reflections of my experience as a mental health provider.

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If you’re interested in exploring these ideas more, check out my first book available on Amazon: The Golden Rules of Retirement: A Psychologist’s Guide To Living Life to the Fullest, No Matter Your Financial Situation. Kindle and paperback editions are available now by going to the following link: https://www.amazon.com/Golden-Rules-Retirement

As well, check out my new book, The Golden Rules of Life Satisfaction: A Psychologist’s Guide to Living a Longer, More Satisfying Life No Matter Your Age!

And, stay tuned for details, including release date, upcoming sales, and future books in the Golden Rules series by visiting my website: lifecanbegolden.com/

-Lee Penn, PhD