Trying Hard To Breathe

  

   “The buttons of my coat were tangled in my hair….”*  The words to a Taylor Swift song are going through my mind as we push my dad down the doctor’s office hallway. I’m trying to guide the wheelchair with one hand while struggling to take off my green down vest with the other. My sister-in-law gently helps to unravel me and takes the vest as if to say, it will all be okay. This is our first follow up with the neurologist since Dad suffered two massive strokes in November of 2021. Several excruciating months ago, our lives were forever altered, and we are anxious for some answers.  We clumsily make our way into the exam room-the two of us plus Dad, the wheelchair, and the nice male nurse who helped with Dad’s transit.  We had to leave my niece behind in the waiting room since we are already over our Covid “persons allowed” limit. As we wait, I am quietly humming to myself: “Ooh Ah, Soon You’ll Get Better”* -the heartbreaking song Taylor wrote about her sick mother.  It soothes me and seems to work much better than breathing.  There has been a deep ache in my chest since all of this happened, and whoever said to “just breathe” has obviously never experienced NOT being able to breathe.  I glance over at Carter, the nurse who has become my unlikely ally today, and he smiles sympathetically. We wait for quite a while, and he mentions something about Covid delays. Ugh, will it ever end? I continue with my quiet humming-“In doctor’s office lighting, I didn’t tell you I was scared…”* 

     She finally enters, a sharply dressed middle aged woman with a cute pixie haircut. She looks more like a real estate agent than a physician. I lose my faith in her when she glances over my father’s chart-I can tell this is the first time she has become acquainted with Dad. I was hoping for the nice surgeon who held a zoom meeting with us back in December. Even though it was mostly bad news-feeding tubes and 24/7 care-he presented Dad’s prognosis in a soothing and kind manner. I have a feeling Miss Pixie Cut is not real concerned about the elderly man with a g-tube in his stomach, who often times can’t remember what day it is.  Just like the nursing home employees, I already know she will chalk  Dad’s problems up to old age. Sometimes I just want to scream, “It’s not old age, he was fine before the stroke!”, but if I’m honest with myself, he started this descent months ago. Still, he was capable, until one day he collapsed from a clot in his carotid artery, and then he wasn’t.  She absurdly asks my dad if he can walk- “How’s the movement going?”, and I want to pick up the stapler on her desk and throw it across the room. Of course he can’t walk, he’s in a f*cking wheelchair! It takes two people to get him from that chair to his bed at night! I can feel the tears brimming and I know it’s probably time to give that breathing thing a shot.  Just breathe, that’s what they say. I take several deep breaths and she continues to tell us we will need to monitor his heart rate, keep an eye on his swollen leg, schedule a follow up swallow test…stuff we already knew. I finally ask the question I’m afraid to hear the answer to, you know, the one about dementia, a word we don’t like to say out loud. “What about his confusion?” I ask, to which she casually replies, “Oh it takes a year to 18 months for that to change, if it does”.  But the nice surgeon told us the most improvement happens in the first six months! I am really close to crying now, but I smile reassuringly at Dad. He is his usual humble self, seemingly oblivious to the blow he’s been dealt. The doctor wraps up the visit with somewhat of a pep talk- his disorientation should improve with homecare (he’s staying with my brother and sister-in-law since they have a main level bedroom), and he needs to keep up with physical therapy.  I look down at my list of questions and it seems pointless. It is what it is. My dad, who skied on his 80^th birthday and worked past his 85th, is a shell of that man, and it doesn’t seem likely he will ever be whole again. I guess we can just be thankful he had that many good years. I would have preferred he go out with a bang, instead of this slow, agonizing descent, but that’s one choice we don’t get to make. 

     As we make our way back down the hallway toward the waiting room, I reflect on my emotional turmoil.  The dynamic with my father is conflicting and awkward. We’re close, but there have been some volatile moments over the years. I didn’t grow up with him- Mom had sole custody, so I never developed an easy breezy connection with him like I have with her. I love him with every ounce of my being, but sharing a house with him the past several years has not been without strife.  Especially with the present political situation. My boyfriend tells me he now sees where I get my defensive stubbornness from. My dad and I don’t agree on a whole lot except having a late-night glass of wine (even then I prefer white to his red), but he definitely taught me how to stand up for myself- albeit, according to him, I fight on the wrong side. Despite our battles, he is kind and fun to hang out with and the most generous man I know, and the fact that we will never ski together again, or share a late night drink, breaks my heart. I am working through all of this in therapy, learning that anticipatory, complicated grief is indeed a very real and painful thing. 

     We pick up my niece and head to the car. I put my arm around her and pull her close, asking if she got the handful of texts I sent during the exam. “Yes Auntie”, she replies sweetly, I’m sure with a subtle eyeroll. She is the one person who tries her best to be patient with my big emotional personality. I am so grateful for her love. We head to the parking lot, and as Carter seems to effortlessly transport Dad from the wheelchair into the white Tesla, the only car he can easily get in and out of, I start to panic. Who is going to help us with all of this? How are we going to take care of a man who has taken care of us all these years?  Again, I try the breathing thing, and I lean in to give Dad an awkward side hug. “Bye Dad, I love you, I’m going home now”, I say to him. “Where do you live again?” he asks, and the ache in my chest spreads to every bone in my body. I want to collapse into a giant sink hole in the parking garage floor. Instead, I breathe, kiss the top of his bald head, and reply, “I live at your house in Denver, remember Dad?”  “Oh yes that’s right”, he says, “80237”.  He always did have a head for numbers. 

     I give everyone a quiet wave and climb into my dirty Toyota 4runner, a car Dad will most likely not ride in again. I wait until Carter heads back into the hospital and for the Tesla to exit the garage. Only then do I lean my head against the steering wheel and let a few tears fall. This can’t be happening, this can’t be happening, please God don’t let this be happening. I think of what my friends who have cared for their elderly parents tell me-“take it one step at a time”. One day, one moment, one task. So, I start the engine, back out of the garage, and pull out onto the busy street. I see the Panera restaurant across Colfax, built underneath a row of sleek apartments. I will never forget that Panera. On a chilly night last November, we ate butternut squash soup and played Heads Up with my niece and nephew for hours while we waited for my brother to come back with news about Dad, as he was the only one allowed in the ER (Covid again). In a strange way I loved that night. We pretended to be happy and hopeful for a few hours. I consider going in for a coffee, but it’s rush hour and I need to get on the highway before things get awful. Even though it’s late March, we have dirty spring snow on the side of the roads, splashing against the windshield and making it hard to navigate. I head towards home, the late afternoon sun shining through my slush-streaked window. Home being Dad’s house, big and empty without him. I can’t stand that quiet house. How I long for him to slam the side door upon his arrival home from work, for the dogs to bark crazily, for him to blast Fox News and slide around on his rolling kitchen chair. Sometimes it sounded like a herd of elephants from the basement room where my boyfriend and I stay. Now, like the saying goes, the silence is deafening. A constant reminder that none of us gets to choose our destiny. A reminder that one day you can get up and go to work and never come home again. I work tirelessly on that house now-scrubbing the tiles, straightening up closets, buying flowers and nice picture frames, desperately trying to brighten up the gloom, as I listen to Taylor sing-“I know I’ll never get it, there’s not a day that I won’t try…”*

     I pull into the cracked driveway, something I’ve been trying to get Dad to repair for years, only now it doesn’t seem to matter. I walk up the cement stairs towards the split level house (hence the reason Dad can’t stay in his own home), rest my purse on one of the pastel patio chairs, and put my key into the lock of the barn red door. I take a great big breath and pull my vest tight against the chill. Maybe there is something to this breathing thing after all. I take another one. The ache in my chest is still there. “Remember”, I hear an old friend softly say, “One step at a time”. Today I will go in and fall into the comfort of my boyfriend’s arms. Tomorrow I will clean Dad’s room. In the weeks and months to come I will go through Dad’s paperwork, organizing it into files for us all to go through. I will sort through his clothes, boxing some up for goodwill and taking the nice things over to my brother’s house. Dad still appreciates a colorful button up flannel, even though it’s not easy to get in and out of these days. Eventually I will organize all the boxes in the garage, throw away old junk, go through countless photos, quietly preparing for the for the house to be sold. But right now I just have to open the door. For a brief moment I consider getting back in the car and driving to Panera for some macaroni and cheese. Instead, I take another breath, stand up straight, and head into Dad’s house. One step at a time. It will all be ok. 

Soon, he’ll get better. 

 

*Soon You'll Get Better lyrics/Songwriters: Jack Antonoff / Taylor Swift