TCC and Nick's Pizza

This has been a great week.  And a challenging one. And emotional. And thought-provoking, frustrating, joyful, heartbreaking, inspirational…and, hopefully, meaningful in the long run.  As the staff advisor to this AB trip, my role is unique – I didn’t plan the trip, nor I am not a student participant. I offer advice, engage fully, and besides some logistics tasks (money, receipts, etc.), I do a lot of connecting, helping, and observing.

Today was spent with our primary partner, the Terrance Cardinal Cook Health Care Center. Others have already given you a rundown on what TCC is and who the residents are, so I won’t belabor that point. Today was pretty straightforward – arts and crafts with the residents in the morning, lunch, and then karaoke and bingo in the afternoon.  I want to share some of my experiences in the last couple days and some bigger questions that I am thinking about…

•          Residents who have dementia from the HIV virus live on a special wing, which is monitored for egress so they don’t wander off.  They are a special group – you may hear some of the same stories from them over and over, and they are very sweet.  But, I noticed that sometimes staff (and to be honest, us) sometimes infantilize them. They are adults with opinions and thoughts, but because they are somewhat childlike, do we diminish their ability to be full partners in their treatment?
•          At karaoke, one of the residents sang a beautiful acapella version of “On the Street Where You Live” from My Fair Lady, dedicated to two of our students, Celeste and Hannah.
•          Most of my conversations with residents has been about their family and their backgrounds (and with a few, a review of old great discos in NYC like The Saint and Studio 54), but oddly (or is it odd?) enough, not about HIV or AIDS.  Of course, I know they are living with HIV/AIDS, but it hasn’t come up. Not once. And I don’t think it has for any of our students either. Maybe it will tomorrow on our last day…maybe it won’t.  But it is SO central to their lives…after all, they are in a public-assisted medical facility for this exact reason. But maybe we place the importance and centrality on them in the present, without fully appreciating all of who they are… musician, horse trainer (yep), immigrant, hair stylist to Yoko Ono (yes, really).
•          The staff there is so dedicated – Tom, Kimmie, Lorelei, Maggie…the list is endless (it really is –there are TONS of staff), but I wonder if I could possibly do anything like this for a living. It takes a special soul (and the patience of Job) for this work and I want to honor their herculean efforts.
•          I’ve been thinking about my father a lot this week. He passed away more than 6 years ago from a neuro-muscular disorder that slowly robbed him of this body while his mind stayed sharp, up until he couldn’t walk, talk, or move. Some of the residents reminded me of him and I caught myself thinking a lot of him this week.  A lot of the residents at TCC don’t have regular visitors – it must be incredible isolating to be alone, with strangers (who become a different kind of family), sharing bathrooms or a room, left to your own devices for periods of time. Staff try to keep them stimulated, but there are a lot of residents and they can’t have 1:1 all the time.  My father stayed home and my mother took care of him (with help from Freda…you are the best!). Not everyone can do that. If I am ever faced with the having to go to a facility for long-term care (or forever care, as the case may be), I would rather die.

OK – enough of all that. Tonight, after we got done, we got to go meet a couple UMD alums who live in NYC. Derrick and Ariel graciously treated us to super yummy pizza, pasta, and salad. Dr. Marsha Guenzler-Stevens, Director of The Stamp (our student union on campus) also joined us. I think our students appreciated hearing about Derrick and Ariel’s college stories and their lives living in NYC.  We can’t thank them enough for their hospitality.

Tomorrow is our last day at TCC – each of us has the freedom to go where we want and interact with whichever residents we want. It will be amazing to gather at the end of the day and share all we have learned through our experiences. Time for bed, now!