Disability, Personal Care

Mourning a Mentsch: The PCA Who Became My Friend

On July 29, 2014, I lost a friend.  Stefan Schack, (who would probably be protective of his age even in death) died in his early 40s.  Almost all deaths hurt those of us left behind, and tragic deaths, far too young, hurt more.  But, in the clarifying pain of that loss, and as I begin the slow transition of celebrating his life, rather than morning his death, I am forced to reflect upon the nature of our friendship, special, unique, and to my reading audience, informative.

See, Stefan and I did not start out as friends.  We met the day that he interviewed to become my Personal Care Attendant.  I was taken immediately with the eloquence, energy, and gregariousness that he brought to his interview, and he was immediately my first choice for the job.  So I was disappointed when he called me a few days later and said that, upon reflection, he couldn’t take the job, because it might interfere with his day job.

Shortly thereafter, I had a weekend position open up, and before I posted it, I thought I would call the interesting fellow who had turned down the weekday shift.  Stefan accepted.

Now, Stefan was my kind of people.  I could tell immediately that we had compatible sensibilities, world views and senses of humor.  For me, I usually see this as a stern red flag.  It is important, I often tell people, to remember that your PCAs are first and foremost your employees, and you need to make sure to maintain a certain degree of detachment.  You may have to fire this person.  You may have to give them pointed feedback if they are not performing their job appropriately.  They may quit, and, trust me, when someone quits, you remember that they were not your friend.

So, I laughed with Stefan from day one.  We joked, and we turned the work of taking care of me into his much fun as possible.  (I would give nearly anything to have one photo of Stefan, wearing  one of my hand towels as a “do rag”, which he wore to keep the sweat out of his face when he was showering me.  He was particularly partial to one that I had in bright yellow and one that I had in lavender.  He said they were his colors for his gangs “the Sunnyside up’s” and “the lavender lug nuts.”)  Our mornings were pretty cool, but part of Stefan’s gift was that he never forgot that he was there to help me, to meet my needs.

Stefan began working with me as certain parts of my health were in sharp decline.  The task of caring for me was not only becoming more difficult, it was changing from week to week as doctors would offer new strategies to address mystery issues.  Unlike his weekday counterpart, Stefan did not have a healthcare background.  His primary job was in technical training at a law firm.  But, as we learned together to embrace foreign medical concepts like laxatives and enemas, the sorts of things that both of us found a little bit icky, he embraced the duties of my care with a compassion that was unmatched.  I honestly think that he was among those most dedicated to finding some way to recapture my quality of life that was slipping away.

And that was the primary nature of much of our relationship.  Almost all of our interactions were paid, and frankly, it would not have occurred to me task for free help from someone who had come to me in part to improve his economic situation.  Yet, in the course of that paid work, his compassion and enthusiasm from my care was incredible.

As was his concern for my well-being.  Stefan would drop almost anything to come to me if I was in need.  Those of us that rely on personal care live on a bit of a teeter totter.  When our care is good, we can achieve the same heights as anybody else.  But that success balances on the whims of the individuals that we rely on to keep us functioning.  Part of mitigating that is hiring good people, but another part of it, given that there will always be people that let you down and unforeseen circumstances, is to have a few people that you know you can count on when everything else goes to hell.  From 2011 through 2014, Stefan served in that role for me, competently managing to protect enough of his time to see to his own needs while never leaving me to feel that mine might go unmet.

Somehow, over the course of this unflagging dedication, we became friends.  Some of this is because of the endless hours spent laughing, joking, and dreaming of the future while we were doing the work of my care.  Some of it is because of the mutual emotional support that we provided each other through life changes, especially as he helped me come to terms with the end of my engagement.  Some of it is because we were just two compatible people.  But a big part was, how could you not come to feel close to someone that takes such good care of you?

At the end of the day, my care was at the center of our friendship.  Stefan was a self-proclaimed foodie, but we rarely ate together.  Stefan was a wine aficionado, but I believe we never once drank together.  I don’t think I ever met one of his friends, and he only met mine if they were coming to stay in my house while he was at work.  It’s true that, in those precious moments of care, we shared many a hope and dream, but always within that structure.

And so it is fitting that my last face-to-face interaction with Stefan was as he helped me to pack my apartment, and saw me off to my new life in Boston.  It is also fitting that the first time that he ever did anything for me for free was when he cleaned up my apartment after my departure and returned my Verizon equipment.  See, our relationship was transitioning, and it was no longer important to maintain that structure.

I was leaving New York.  Stefan wasn’t going to be my caregiver anymore, and I think we were both looking forward to building a new more social kind of friendship as that role was left behind.  We were talking about a visit, this summer, and reading the various remembrances that others have of Stefan, I bitterly resent that we have missed the opportunity to build that new, next kind of friendship, around bars, parties, and urban landscapes.

And yet, I am grateful to Stefan.  Not only for the friendship and peace of mind that he provided over those years, but for demonstrating to me just how it is that one can maintain an effective friendship inside of a truly professional care relationship.

I have had a few other caregivers become friends.  Usually it was because the actual professional part of our relationship didn’t last very long.  Or because of truly unique roles.  In one case it was someone that I quickly came to view as a brother, (his kids now call me Uncle Matan) in another someone to whom I still refer as a second mother.  What Stefan showed me is a model for a friendship that works inside of the care relationship, by never losing sight of three things: first, the primary purpose of the interactions remains my care; second, I am requesting labor of this friend and should be prepared to compensate them just as we all expect to be compensated for our professions; and third, that, friendship aside, Stefan understood the importance of drawing boundaries, of understanding that our friendship did not mean that he could compromise himself for my care any more than one would compromise oneself for any other job.

These are the three traps into which consumer/PCA friendships can fall, which will usually destroy both relationships, professional and friendly.  Often, a PCA who becomes a friend can forget that there is a job to do and that their “friend” is still an employer with expectations that their needs will be met.  This can often lead to explosive partings.  The other two risks are paired, that the line between favors and shifts might blur, and ultimately become exploitive of the PCA friend, or that the PCA friend will become so committed to helping the consumer friend that they neglect their own needs.  Either one will destroy a friendship in short order.

Somehow, Stefan managed to navigate all three and become a true friend.  It created a strong basis that we thought would carry us for years to come.  I can only attribute this magnificent balance to the superb human being that he was.

And so, my friend Stefan, for whom I am grieving, not only made my life immeasurably better by the care and friendship that he provided.  He showed me a model, however rare, of the way for true friendship to grow.

In a week that has seen much PCA drama for me, I don’t know whether that balance was a once-in-a-lifetime thing.  I hope not.  I know that if I find it again, I will see and hear echoes of Stefan, the PCA who became my friend.

May his memory be for a blessing.

The family has requested that in lieu of flowers, a donation be made to either the American Heart Association or to Housing Works (NYC) in Stefan’s honor.

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