Jonnie's Place
Unpacking the stigmas of "facility living"
Baggage
From a very young age, I was taught that there were two types of parents who cared for people with disabilities in our small-town community: the type that kept their children and cared for them at home, and the type that shipped them away to a “facility” or “permanent placement”. The latter were lazy, ungrateful, inept, and wore a scarlet letter, while the former were selfless, worthy, righteous, and wore a badge of honor.
I learned this through stories and heated exchanges at holiday parties. I learned it from Jonnie’s teachers and staff at school, who would whisper, “They’re so lucky they have you” in hushed tones to moms as they picked up their children with disabilities from school/day program, just within earshot of the residential staff who were helping the other children with disabilities get ready to leave.
Friendships fractured over a parent’s decision to transition their child to a care facility outside the home. I’ve seen marriages end. People passed horrible judgments about abandonment. They propagated rumors of, “I heard she only goes and sees her son once a week - and I guess she has a new boyfriend too.”
Anything resembling normalcy was undeserved because it came at the cost of sending your child to a facility. You made a deal with the devil, and your life is better only because the devil bestows these earthly delights.
To a reader who has spent their life outside of this community, you might assume that these antagonists operated in the shadows, distant from the realities of caring for someone with disabilities. You might imagine this spite is a misunderstanding; simply a cowardly armchair caregiver who can’t fathom the challenges of providing for a person with disabilities, right?
Wrong.
Harmful words were exchanged between teachers, staff, and caregivers in the special education classroom. The fractured friendships I witnessed were between mothers who both cared for children with disabilities. The painful gossip was snickered around a picnic table at the local summer camp dedicated to supporting residents with intellectual and physical disabilities.
I didn’t learn about this stigma from the internet, or from people who would never understand the challenges of providing care for someone with a disability (that would be easy to shrug off). No, I learned this from the community itself. This stigma about living facilities and the traumatic fallout of “placing” a dependent with disabilities unfolded within the community.
I carried this baggage into my caregiving journey with Jonnie. Good caregivers dedicated and sacrificed their lives to the cause. Lazy and unloving caregivers gave their kids away to the state.
This post is about Jonnie’s living transition to a congregated care/living campus. It’s about the decision that I made to move him. It’s about the grief I feel every day, and the tremendous amount of growth I’ve seen in Jonnie since the transition.
Pretending to groove
Jonnie and I moved to a two-bedroom apartment in November of 2023. After many long meetings, phone calls, unanswered voicemails, informal conversations, and late-night emails, we finally established a rhythm in the Spring of 2024.
I would wake up at 5:45 am and get myself ready for work. At 6:30 am, I would prepare him breakfast with his required medication crushed in applesauce, administer his insulin, and feed him. I would then help him use the bathroom, brush his teeth, and get him changed. I’d pack his food for the day, which was thrown together the night before. I’d run through my diabetes management checklist: did he have enough insulin in his reservoir? How much battery was left in the pump? How many days/hours until his CGM needs to be changed? When was his last infusion set change? Did I need to order more supplies? Did his bag have everything his day program needed? Was his phone charged so that I could track his blood glucose levels throughout the day while I worked?
At 7:00 am, an old friend would arrive at the apartment so that I could leave for work. They would watch him until 8:40 am, and then drive him to his day program, which began at 9:00 am. At his day program, he ate a 9:30 am snack, a 12:00 pm lunch, and a 2:30 pm snack. He needed insulin for each of these eating times, and a nurse was required to be staffed in his day program (if, for some reason, the nurse called out, Jonnie would have to stay home, and I would not get to work). At that time, I had one or two people on rotation to give Jonnie a ride home at 3:00 pm. They would need to use the key I left in his lunchbox to get into our apartment, and watch him until I returned home from work at 5:15 pm.
I would then heat a previously prepared dinner, administer insulin, feed him, bathe him, help him use the bathroom, and perform any diabetes management tasks that he needed. I was taking a night class twice a week from 6:00 - 8:00 pm. Jonnie would usually watch opera or a Julie Andrews movie in the living room until about 8:00 or 8:30 pm (not my first choice, but definitely his). I would then brush his teeth, use moisturizing cream on his hands, and put him to bed. Once he was in bed, I’d prepare tomorrow’s meals for his day program. Around 9:00 pm, I’d have a chance to work, start a project for class, or maybe unwind with some leisure time.
For those of you who read my introductory post, you might remember the conversation I had with the family friend who worked for DDS - the one who said, “You need a life, too.”
In that conversation, I described all of Jonnie’s needs. I asked her if the state could send a nurse to our apartment to help with his medication and insulin in the AM and the PM so I could have more time in the margins for everything else that needed doing (cooking, cleaning, finance management, doctors’ appointments, social engagements, etc.).
The answer was no. There were no nurses available. No one with the ability to administer medication or insulin. It just wasn’t possible.
She recommended I consider “placing him in a facility”.
Well, that wasn’t possible either. Only I could care for him the way he needed. I was the one who could comfort him, knew what he wanted, and understood his language. I carried the baggage given to me by others who’d walked my path. I was fueling my self-importance. I was his savior.
My health was suffering. I was binge eating more and avoiding doctors. I had no time or energy for sustained exercise. There was a five-week period that spring where I contracted COVID, the flu, norovirus, and the common cold. Back to back to back to back. I ignored the signs that my body was rejecting my new life.
It was the same trap that had sprung on so many caregivers before me. My mantle of achieving ultimate caregiver-dom existed under the pretense that only I could do it. If I accepted that others could give him care, and maybe do it better, I would deflate, and in my mind, risk shirking my responsibilities. What was my sacrifice for if others could do it better? No, it had to be me.
When the entirety of your identity is staked on a singular perceived truth, your only choice is to carry on, to dig deeper and faster. Questioning yourself feels unsafe.
Like a sleeping shark, I kept swimming. Stopping to consider alternatives seemed dangerous.
The news
Fortunately, a few people in my life did not carry the same baggage and encouraged me to have a conversation with Jonnie’s case manager about options for placement.
“It’s just a conversation”, I told myself. “I’ll see what’s out there”.
Jonnie’s case manager gave me the news I wanted to hear.
“Most families hear nothing for 5-10 years after an application for placement”. He suggested I “throw my brother’s application in the pool” in case my circumstances changed in the future, but that it would be very unlikely we would hear anything soon. This came with a caveat. If my brother were offered a placement and we weren’t ready, the state may not offer the opportunity again.
I applied for Jonnie’s placement, comforted by the prospects of an uninterrupted clockwork status quo.
A few months passed, and despite changes regarding who was giving the rides to his day program, our routine was working-ish.
In early October 2024, Jonnie was visiting with his aunt, and I had an opportunity to play golf with friends. I missed a call from Jonnie’s case manager in the middle of our post-round lunch powwow. I snuck out onto the balcony in the front of the restaurant and returned his call.
“Hey Joe, I have some really great news… there’s a bed ready for Jonnie immediately in Hartford! I want to set up a transition meeting.”
Stunned.
I cried as my mind and lips bounced from question to question. What if I said no? How long did we have? Who do I talk to about how to care for him? Would he have his own room? Where was this place? I was embarrassed by my reaction and did my best to conceal it from Jonnie’s case manager; he was confused.
I called my partner Rose and told her the news.
I could barely choke out the words, and we cried together.
The conversation
Readers who don’t know Jonnie might be wondering: Did you talk to your brother about all of this?
Down syndrome, much like autism (he has both), is a spectrum. My brother’s cognitive system doesn’t enable him to take part in or process these conversations in ways neurotypical people might. He has a limited vocabulary and an emotional intelligence that surpasses his cognitive function. He feels much more than he plans or considers.
If I ask him, “Do you want some coffee?”, he will say, “Yes” with a big grin.
If I ask him, “How do you want your coffee?”, he will say, “Yes” with a big grin.
If I ask him, “When do you want your coffee?”, he will say, “Yes” with a big grin.
He picks up keywords that make him feel something, like coffee.
If I asked him those three questions consecutively, each “yes” might get more hesitant than the last, because he understands that he’s not understanding.
“Do you want to use the bathroom?” or “Do you not want to use the bathroom?” would both be met with a pleading, “No”.
His level of communication and understanding is complex and changes day to day. Some days, he will ask you about a person he hasn’t seen in 10 years. Other days, you will be hard-pressed to get anything other than a yes, no, or an unintelligible sound.
Jonnie internalizes absorbed feelings and energies.
I would not be able to have a conversation with him about moving to another place (something that was supposedly 5-10 years away) without painting my grief onto my words.
“Home” meant/means something to him, but the words around it, if colored with sadness, would only worry him and bring him no closer to understanding.
Surprise visit
“Now, this place had better be perfect,” I told myself. Only the best of the best.
The problem was that I didn’t know what a good or bad facility looked like. I’d been taught that these facilities were filled with bad actors who were careless and rude. These facilities were places where people went to die. They weren’t a realistic alternative to loving, homegrown care.
Nevertheless, I visited this facility. I wanted to see it, smell it. I wanted to talk to the people who worked there and ask difficult questions. I was prepared to disaggregate it into tiny, unacceptable little pieces and dismiss it altogether.
I found that the residents had nothing but kind words to say about their caregivers.
And that they had three home-cooked meals a day.
That Jonnie would have his own room, and that we could decorate it how we wanted.
I found that the facility was equipped with 24-hour nursing.
I found that the house supervisor was a sweet woman who had been working there for over 20 years.
That the staff there asked us many more questions than we asked them; they were eager to meet my brother.
I found that the house would still drive Jonnie to his day program every day so that he could continue to see his friends.
That they go to shows at a local park on Thursday nights, and go on camping trips in the summer.
That they decorated for every holiday.
That every resident had an individualized plan with the PT, OT, Speech Pathologist, Dietician, Nursing Supervisor, and Primary Care Physician on the premises.
I found that residents do music therapy and sing karaoke on Saturday mornings.
That I could accompany him to all doctors’ appointments.
That he could spend as many nights with family as he wanted.
And that I would remain his guardian.
They were rigid in all the ways you might hope, and flexible in all the ways one needs to be when you’re caring for humans.
In many ways, this visit evoked insecurities for me. People here had access to a slew of professional resources. It was clear that I was not the only one who could give my brother the care he needed.
After this visit, keeping him felt like a selfish decision. He needed to be allowed to carve out his own space, just like you would afford any young person. Only I could stand in the way of his growth.
This visit, coupled with the uncertainty of future availability, drove my decision to move ahead with the transition to a congregated care/living facility.
The transition
Jonnie and I visited the facility twice together in late 2024. We introduced him to the staff, the residents, and the medical professionals. I decided that we would slowly transition him to his new home, which we called Jonnie’s Place.
Dropping him off for the first night was heartbreaking. Not because he protested, but because I had to accept that I was never the person I thought I was, never my brother’s savior, and that we were entering a new chapter in the journey together.
I felt incredible guilt because of the stigmas I internalized as a boy.
At home, my brain would hear innocuous sounds on a TV show and pervert them to sound like pervasive insulin pump alerts. I would awake to imagined cries at night, only to sit up and be met with silence.
My guilt and shame were quelled only by Jonnie’s successes. His resilience, love, and accomplishments in his new home were my greatest source of strength. He continuously proved that we made the best decision for him.
Life after
After five months, I’m happy to report that Jonnie is still thriving in his new home. He’s made new friends, learned new skills, and become more independent. He’s smothered with love at a family member’s house every weekend and holiday. He typically spends five nights a week at “Jonnie’s Place” and two nights a week with me or one of our aunts.
When he visits me, we spend more quality time together. When he tires of me, he asks to go “home”.
His fellow staff and residents adore him. I’ve heard multiple times that he’s changed the dynamic of his home. He’s seized the opportunity to be additive in a new community, and he’s done it on his own terms.
I’m proud of his force. Moving for anyone is a challenge, and even more so for someone with developmental disabilities. My brother has exceeded all my expectations and protects me from the guilt and shame of my decision.
Not everything is perfect. Since the transition, we’ve spent a few nights in the emergency room because of challenges related to Jonnie’s diabetes management. Jonnie’s Place calls me at all hours to alert me of changes requiring immediate attention, and because of that, I’m always by his side for the more difficult moments.
I’m happy to do it.
Still processing
I’m still learning my lesson in all of this. I wish I had the correct word order to describe our experience, but I found this particularly difficult to write about. I can’t cut through the emotional weight of this decision like I can with other experiences.
What I do know is that my story is not a guidebook. Every situation regarding permanent facility living is unique. I am not here to prescribe our experience as the best path forward. I’m only here to share my experience in the hopes that it brings someone else closer to better understanding their options.
It’s difficult to rebel against the undercurrent of subtle teachings we’re exposed to as children. The hardest lessons to unlearn aren’t delivered in a classroom. They’re the lessons that color the vast world around us. The lessons that spin narrative into minds without ever rising to conscious consideration are among the most harmful and deepest-rooted.
What’s next?
Next Friday, I’ll really drop a post about disability support services in Connecticut. I wanted to tell the story of Jonnie’s placement before doing so. I hope your connection with Jonnie, new or old, will provide a face, story, and lens for the information I’ll be sharing.
What can you do?
If this writing or our story helped you, click the subscribe button; it’s free. It enables you to receive future posts emailed to you directly as soon as they’re released. Also, consider sharing this story with someone close to you.
Want to connect or give some feedback? Drop Joe an email here.
So good! I got tired with you as you shared your routine with Jonnie. My eyes moist as you described both you and Rose’s emotions regarding the call…and then the joy of Jonnie in his home! Thank you for your writing and the lesson that we all need to be sensitive and kind to each other.
Thank you for sharing all this! As a caregiver for a parent - this message, especially, resonates with me! The choices were not exactly the same, but much of the guilt is. You continue to inspire. Thank you!