Perry and Me
I have a friend whose name and location I cannot mention. He lives in a group home situation, somewhere on planet Earth. I’ll call him Perry!
The reason I cannot identify him is due to state and federal regulations enacted to protect patients in the care of the state. Perry has a state-appointed guardian who signs papers for him and visits periodically to check up on his care. This particular state worker is a wonderful lady, extremely committed to her clients. She genuinely cares about Perry. When she visits, she checks on his living conditions and his medical situation. She questions the staff, reads through progress notes, and reports any signs of possible abuse or neglect.
The regulations have a very real and basically good purpose. People like Perry have little ability to protect themselves from society’s predators and therefore need others to advocate for them and protect them. These group homes, licensed by the state, exist all over the country. They are staffed 24 hours a day by LPNs, CNAs, medication techs, floor workers, cooks, cleaners and one or two directors and a licensed administrator. The daily lives of the residents are closely monitored, and all their personal needs are taken care of. Medications are administered four times a day by Certified Medication Aides; people who have completed a five-day medication administration course
In this particular group home of twenty or so, the majority of the residents carry a diagnosis of mental illness. Some carry a mental retardation diagnosis as well. In addition, the majority, due to years of taking psychotropic medications and living a sedentary lifestyle, are also physically ill; most suffering from diabetes, heart ailments, lung ailments and obesity.
At a glance, the facilities and the system that supports them seem to be fulfilling a vital need in a very effective manner. The patients are cared for. They are safe. They are warm. They are well fed; at least in terms of quantity.
But, let’s look a little deeper. Let’s look at the life of my friend Perry.
To set the stage, this particular group home has recently come under fire from the state. The state found many deficiencies during their yearly inspection, their report detailing an unclean and potentially dangerous environment. The owners responded by purging most of the upper management and several staff, and spending a huge sum of money to hire contractors and cleaners to turn the place into a clean, safe environment.
This was the setting that presented itself on my last visit. The owners had done a great job. The place was clean and inviting, and the new staff people (and a few of the old ones who survived the purge) were busily assisting residents with their daily needs.
On a previous visit I had given Perry a portable CD player and a few CDs and had left instructions with the staff to help him work the thing. It’s a very simple device, but Perry, in addition to being mentally “ill” has a mental retardation diagnosis. Simple tasks can easily overwhelm him. The reason for the gift is that Perry loves music, but is slowly going deaf and can therefore not hear the music that occasionally plays at the home or in the vehicle used to transport him to appointments. I felt that this was the perfect way to connect him to his own private source of music.
I set it up, inserted a CD and gave several of the staff instructions and begged them to check in with him each day to make sure he was using it properly. But, back to the present! Perry greeted me with his usual blank look, slowly followed by his ingratiating smile as his brain processed the information that the human standing in front of him was his dear friend David.
“I thought that was you…. I think about you sometimes.” Perry is not much of a talker, so that was quite a lengthy greeting.
“Where is that present I gave you?” I’m not much of a conversationalist either!
Our mostly non-verbal relationship began a couple of years ago as I conducted an exercise group for several of the residents. Although Perry is well liked by residents and staff, he is difficult to get to know. His usual response to contact from another person is to shyly turn away. If not spoken to, he remains silent. He makes no requests of others and seldom engages in any group activity. Although he has resided at this group home for over 20 years, he knows the names of only a very few.
I found that when I engaged him during the group he would maintain eye contact for only a second or two. One day I tried a new approach. When he looked in my direction, I loudly called his name, smiled my broadest smile, and nodded to him. His face registered a slight shock and then immediately softened into a smile of absolute delight.
From then on, he and I have been joined in a mostly silent love for one another. In the group experiences I would make sure I was opposite him and ready to turn on my smile full force! It never failed to bring forth that radiant smile of his as he relaxed and maintained eye contact.
Back to the present and the present: “Where’s that CD player Perry?” “It’s next to my bed. It doesn’t work. It worked once, but now it doesn’t!” I suppressed the desire to react with disgust, anger and all the other emotions I feel when I encounter the seemingly unwavering ability of staff people to screw up even the simplest tasks that are not directly monitored by a supervisor.
I picked up the player from his bed stand, and placing the headphones over my ears, pushed the play button and instantly heard the very CD I had inserted three weeks earlier. Obviously the staff were not able or willing to honor my simple request to assist him. Placing the headphones on Perry’s head I sat back and watched his angelic smile form as the music flowed into him. He sang along to Louie Armstrong’s rendition of “A Wonderful World” as I luxuriated in his angelic presence.
My enjoyment quickly faded as I became aware of the strong smell of urine. Looking closely I discovered that his bed was soaked, as were his trousers.
My friend Perry is 69 years old and has spent his entire adult life in institutions. He will probably not reach his mid 70s. Along with the psychotropic meds, he also takes meds for about five major physical conditions. He is on my short list of institutionalized friends that I hope to rescue and place in loving homes as soon as my book is published and my first million is banked.
I picked out some clean clothes for him and notified the staff of the condition of his bed. Laboriously Perry took off his soiled clothing, washed up and put on the clean clothing.
“Let’s go into town, okay?”
With no visible alteration in his demeanor, Perry shuffled off to the front entrance as I gathered up his coat and hat. On the way to town I put on one of his CDs, turned the volume way up, and joined with him in uninhibited accompaniment to Elvis, Johnny Cash, Roy Orbison, Judy Garland and Pete Seeger. I can’t honestly say which of us enjoys this experience the most, but it is probably me. In Perry’s company I give myself permission to be louder, more joyous and more uninhibited than I normally am. When Judy Garland’s rendition of “Over the Rainbow” came on, Perry interrupted our singing by saying the same words he always utters when Judy Garland is mentioned.
“That’s Judy Garland. She was Dorothy in the Wizard of Oz. I see it on TV sometimes.”
Same three sentences, and spoken as if it is a completely new thought. I’ve learned not to ask follow up questions about Judy, because Perry seldom responds to pointed questions. He seems to drift off to another section of his brain. I simply smile and say my usual two or three words. “Yeah, good movie.” On each outing I try to take him to new places, new experiences. His life for the past twenty years has been a monotonous merry-go-round of Walmart, Dunkin Donuts, medical appointments, rides with the group in the company van, and the very occasional group outing to a park, country fair, or baseball game.
I’ve managed to introduce him to llamas, museums, lighthouses and health clubs, but today I have only a few minutes and was simply taking him with me as I ran errands. Parking in the center of the village, we walked silently to the post office, me in the lead with him shuffling behind. In past visits, as I conducted my business, he would stand motionless, hands in pockets, avoiding eye contact with the other patrons. On this day, for whatever reason, I turned to him and handed him the freshly stamped outgoing mail.
“Why don’t you put these in the slot?”
“Yes, that’s the place.”
With just a few nervous starts and stops he did a good job of getting all those letters on their way!” Apparently bursting with pride, he turned to me, and there was that smile, deeper and more angelic than ever.
“I never did that before!”
Since writing the above I have visited Perry twice more, each time finding him in relatively the same condition: shabbily dressed, wandering through the facility singing to himself, his cd player sitting unused on his nightstand. On both visits I inserted new batteries and gave him operating instructions. I haven’t bothered to bother the staff. It’s a bother to them to be bothered and a bother to me to beat my head against the wall. To be fair, it is not the staff’s fault. They are horribly underpaid, unappreciated and worked to death. They just do not have the time to focus on the non-essentials like music, conversation, dance, walks, singing, laughing, living!
On each visit I take Perry to someplace different and introduce him to some new and exotic experiences. He gives me so much, puts a song on my lips and fills my heart. He is the easiest person to please that I’ve ever known and I feel sorry for those who never get the thrill of being with such a one as he. Recently I treated him to a visit to the exotic town of Camden, Maine because Perry had often seen the movie Peyton Place and knew it had been filmed there some 50 years before. I took him to all the movie locations I could find and he was amazed that he could actually walk in the same spaces that were once walked by Lana Turner, David Nelson and all those other people that to him only exist in the movies. As we walked he gave me background information on the movie and its stars. He seemed to be especially knowledgeable of Lana Turner and filled me in on her birth date, the name of her lover and how he died and of course a complete list of her other films.
It’s funny. I don’t really feel sad for him. In his own way, he’s doing better than most of us. We have it all and don’t seem to appreciate much. He has no money, no prospects and not very good health, but I know that on my next visit I’ll find him singing, and I’ll be very appreciative of his silent efforts to cheer me up
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