How do you decide to go from saving someone’s life to arranging the best death? When is the right time to make that call? How can anyone make that decision?  How do families decide that for their loved ones?  Amazingly, lots of people have to stop everything and question the healing path they are on and change directions.

I will never forget that bright spring day in May 2010. It was a Tuesday and I was rushing to get ready to head to the hospital to meet my dad for his chemo treatment. At this point in the game he had Parkinsons and lymphoma. He was in a rehab in South Jersey and was being taken to PENN for his chemo treatment.  That morning his neurologist finally called me back and we spoke frankly. After I asked him what else we could do for my dad, he told me he thought my dad was at end stage Parkinson’s and that there really was nothing more he could offer.  Really? We talked a bit more and he informed me this stage could last a while but there really wasn’t anything else he could do. He told me my dad would eat less and less and would eventually be unable to swallow.  Then he asked me to consider donating his brain to research. Wow, talk about lack of tact.

I drove to PENN reeling. Why were we going to give him chemo if he was in end stage Parkinson’s?  This made no sense.  I was so relieved when I told my brother all this information and he said the same thing? We were on the same page. This was important.

My dad had arrived and I spoke to his oncologist about what we were thinking.  We all met with my dad as he lay in the bed unable to move much of his body due to the Parkinson’s. We told him what the neurologist said and that we weren’t sure we should keep treating his lymphoma. My dear father said, “Well if that’s what everyone has decided then, ok.” No, I didn’t want to decide FOR him, I wanted him to decide FOR him. I knew, however, that he couldn’t really anymore and we had to decide.

We called my brother who lived in Mexico, talked with friends and hospice. It felt like we were giving up somehow. There had to be something else we could do to make him better. But we all knew in our hearts there wasn’t.

I think my brother Dave said it, we had to start arranging the best death possible. He was right. So we did. That evening after a long day at PENN we transferred him to an inpatient hospice facility to give us time to arrange to take him home.

My dad was transferred to hospice by ambulance and I followed in my car. I arrived on the top floor of the old graduate hospital where the inpatient Penn hospice is located. I was a wreck. I could barely hold back my tears when I arrived and was met by a tall, big, wonderful black man. I told him why I was there and who I was looking for. This big beautiful man hugged me. A big, loving hug.  I still am thankful for that man and his hug.  He told me to wait in the lobby while they got my dad settled in his room.

I met met my dad in his room and helped him get settled. We met with the staff doctor and nurses and went over his meds.  It was late and my dad was hungry.  We had been so busy making arrangements he hadn’t eaten. The staff brought him up a sandwich and chips. I turned on the television and opened up his dinner. The American idol finale was on and I fed him his dinner. He only wanted potato chips so I laid down next to him in his bed and fed him potato chips and made him watch American Idol with me. This was a great end to a very hard day.

This summer we finally made it to Mexico to take my dad’s ashes home. Since he died in 2010 we have been trying to all get together to have a memorial and take his ashes to his final resting place. He wanted to be in Mexico, in the small town he spent his summers vacationing. Consequently, we spent our summers there too. His beloved Majalca became our beloved Majalca. We spent weeks with uncles, aunts, friends and cousins. We learned to ride motorcycles, climb rocks, eat beans, laugh together and cry together. It is a wonderful place to grow up.

So this summer was the first time we all piled into our family home in Mexico. This time my three kids were with us. We had a wonderful weekend memorial for my dad, more about that later.  What caught me off guard was that my parents weren’t there. Strange, right, because I know they have been gone since 2010. I know they are gone. I have missed them since they died. What I didn’t expect was the renewed feeling of loss in an old familiar place. We always went to Mexico together. So, of course, it makes sense that it would be strange to go there without them but on some level I expected them to be there, that I would see them.  I kept expecting to go out on the front porch and see my mom having her morning coffee or walk by my father’s room and see him laying in bed reading. Logically I know that is crazy but on some emotional level it made sense. I mourned them again and realized that when someone you love dies all the places you shared together are yours together. The memories you build are yours together. How do you go back to those places without your loved one? Some people may not go back, I understand that, but doesn’t that end up hurting you by keeping you from a place or experience you love? I think so.  Maybe you go, knowing it might be difficult but knowing it is worth it. Lucky for me I was surrounded by my crazy, wonderful extended family who also missed my parents. This helped. Hopefully you have some crazy extended family of your own.