Updated July 29, 2014.

 This is part 2 of the Interview with Marc Vera: for more context, read part one first. 

Author's note: Caregivers want to hear what helped other caregivers, that's what all the research says, and every caregiver I've ever spoken to wants to know. Each month we'll be featuring an in-depth interview with a caregiver who has gotten through, stumbled sometimes, and ultimately is able to look back on their experience with a sense of contentment of sorts that they did the very best they could.This part two of a two part interview with Marc Vera.

 

How did you maintain an emotional/romantic/spousal relationship with your partner when he was sick?

We talked non-stop.  We spent every single day together.  Every Thursday was "date day" where we'd go to the movies and out to eat and Saturday was "adventure day" where we'd find something interesting to do in the area.  We also went on trips.  When he said he'd never been to the beach, I rectified that.  Two weeks later we were at the beach.  We went to NYC, Rochester (MN + NY), Atlanta, Ashville,  Winston-Salem, and Dollywood.  Whatever he asked for, happened.  Oh, fear not, he wanted simple things like cheesesteaks and ice cream cakes.  We said "I love you" all the time and held hands at the movies...and while he was getting chemo.  We didn't care what people thought.  We supported each other with everything that was going on.  Communication was key, and we mastered that early on.

I know you had some serious problems with your partner’s family both  before his death, and afterwards as well. Do you want to share anything about that situation as well as anything people in similar situations  might do to protect themselves from that kind of family craziness. Not that I am sure there is anything you can do. 

My partner's family was toxic.  They didn't start out that way, but it turned ugly.  It was a mental struggle to not blow-up at them, but I knew I had to keep things in check for my partner's sake.  They didn't really visit.  When he was home on hospice care they went back home twice but told people I was the one preventing them from seeing their son.  They also verbally abused me and even called me a nazi, but I never once stooped to their level.  So how can you protect yourself from this?  You have to stand your ground and rise above their words and actions.  Keep your cool, because you have to live with yourself when everything is over and done with.  You want to make sure you can live with yourself and what you did, or didn't do.  Make sure to distance yourself from them.  When they were in the apartment or hospital room, I was usually out ... and vice versa.  You have to find a system that works to make it cordial.   [There's a lot more to what happened that I'm writing about in my memoir...because this issue isn't just an lgbtq issue.]

How did your life change after your partner’s death?

I've been lost.  I have a purpose, but I'm just floating and drifting along.  A few months ago I looked out my window at the water and said to myself, "I miss life."  Part of it was that I was in nursing school, part of it was that I missed my old life, but part of it was that I'm still stuck in a funk that most don't see.  I traveled for six months after my partner's death, then I worked in advertising and took pre-reqs for nursing school.  I graduate from Johns Hopkins School of Nursing July 18.  While I was in school I also became an AFAA certified group fitness instructor and have been teaching kickboxing, tabata, barre and metcon30.  I've always been a very optimistic and "live for today" kind of person.  That's only been further enhanced with my partner's death.  Life can change in an instant, so take advantage of every moment.

If you a group of caregivers sitting in front of you, people in similar  situations, what would you tell them? What advice would you give?

Live in the moment.  You can't live your life waiting for someone to die...in that fear.  You have to live with them and enjoy the small things, because tomorrow, there may not be anything.