My New Home

I went home this weekend to visit my parents. Funny enough I still call Great Neck “home” even though it’s really not my home anymore. It took a long time for me to feel like New York City was my home, but in the last several years my apartment in NYC really feels like home.

When I think about “home” I suppose it’s what I would refer to as a safe space, and for the majority of my life my parents house was just that. When the world was scary, I re centered myself there. That was my happy place.

It saddens me to say that it is not my happy place anymore, in fact, it’s often quite the opposite. It has become a mirror constantly reflecting at me and how much has changed, and a stark realization as how to it will never be the same. I recognize that change is a constant part of life, and I embrace that, but this kind of change is something I wish I could erase from my memory and never look back.

One of the many challenging parts of dealing with an Alzheimers or Dementia patient is that everyday can be so different. On mothers day I had an amazing day with my dad and sister, it was so good I almost cried from happiness. For a few moments my new reality wasn’t real. My dad was having a wonderful time, he was happy and smiling, cracking jokes, very coherent and very “there”. I tried to mark that moment in time so my brain would remember it forever.

This past weekend was not so great. My dad was sad, unable to access the exact emotion that was bothering him, he was frustrated and flustered. He enjoyed every second being with Lily, which is why I push myself to go there as much as possible, but my heart shatters a little bit each time I feel the pain of my parents suffering. The feeling sticks on me and it is very difficult for me to shake it. Mike says I always need 48 hours to recover after visiting, maybe on a good day its only 24.

I am constantly facing the internal struggle of how to prioritize my happiness alongside my parents and the disease they face. I cannot ask them how they did it, how they felt when their parents got older and things changed, those are questions I wish I had asked sooner but I did not. In some ways I feel as if the only way I could reach my full potential and thrive in my current life would be to abandon a significant portion of my “old” life. It sounds so incredibly harsh and it’s something I would never want to do, but I continuously struggle to separate what is now, from what was then. It remains nearly impossible for me to digest how my father, the sharpest, smartest, funniest, kindest man Ive ever known is now different. I know we are all fragile, and as we get older even more so, but the way Alzheimers & Dementia robs people of their fundamental personality is something I don’t think I will ever get used to. In fact, I don’t think human beings will ever adjust to that pain or emotion, it is so surreal and un natural that it challenges everything we know to be “true.”

Perhaps the most challenging part is hearing my dads voice in my head, telling me “sweetie go have fun”. He was never the kind of person who would want me to sit at home and sulk, he is the kind of person who would make the best out of any situation…. but how do you make the best out of this? My dad is the best kind of person who celebrates anyones happiness. I remember countless Memorial Day weekends telling him about being in the Hamptons with my friends and how excited he was for me, he loved seeing people around him happy and he shared in their joy. I know he still holds the same sentiment in his heart, but sometimes his brain plays tricks on him and he can’t access those emotions anymore. Its devastating to watch and I just don’t know how the human brain can reconcile these seemingly contradictory feelings?

Sometimes I have to take a drive when Im there to try and get out of my own head. I find myself fantasizing. I think about going to live in Italy, or Spain, ive always pictured myself and my family living in Europe again, and I imagine my dad telling me how amazing that would be (and how of course he would come visit)..

But now he could no longer visit me. Those days are gone. The reality I face now is that living some of my personal dreams, would feel like they involve abandoning my family, and I don’t know how to reconcile those emotions. On one hand I know that we have the greatest care in place for both my parents, and that is what is most important. I want to make sure my dad has as much quality time with Lily as he can, especially while he is still relatively healthy and mobile, without sacrificing my own mental well being in the process. I struggle to understand what the right balance is? If I pursued some of my own dreams and just “lived my life” would that make me a terrible human being? I don’t want to have any regrets either way, and my concern is that I will always be disappointing someone. I want to cherish these moments with my parents while they are still physically here, but mentally and emotionally it is so far from what it once was that the impact it has on me is quite confusing.

I thought about writing this post over the weekend and I wanted to leave it open for discussion, because I am far from having all of the answers. If anyone has ever experienced these thoughts or feelings, I would love to hear from you. Please leave them below in the comments or feel free to write them as a private message. Reconciling this sort of grief seems to be something that is not often talked about, and I hope to start normalizing the conversation…

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Till next time…

xx,

Em