The following post has been submitted by Anna Zuck Downs in collaboration with Jodi Lee Fleming Photography.
It’s interesting to write this from the place I’m in now. When Jodi originally approached me to share my journey, it was before my dad was admitted to the hospital, it was before I shattered. I was in a coping, believing, and enduring place. I learned a lot in that place about my own power and strength. But writing this only 120 days later, is writing from a drastically different place. It’s all very much raw and real right now, and I am still sorting out my emotions surrounding who I am and who I will become as a result of it. It’s all a process. This most recent part exposed my vulnerabilities - my terrified dark places that I truly did not know existed until now. But I’m glad they’re out there. I’ve opened myself up to them, and instead of ignoring them, I welcomed them into my life to exist in a place they needed to fill. They rarely speak right now, and it’s likely they will speak again. However, they served a great purpose in allowing me to unpack some deep crevasses that I had been patching day in and day out for the last 4 years.
When I think about my life, when I talk about my experiences with friends, and when I think about how onlookers perceive my life from afar, it’s safe to assume that I’ve led an exciting, adventurous, and happy existence. I’ve traveled the world, and through my expeditions have managed to have countless ‘once-in-a-lifetime’ opportunities. I’ve had the chance to live abroad in Hong Kong, South Africa, and now the US, and I was fortunate enough to find and marry the love of my life. I’ve always held a glass-half-full perspective and kept that general attitude as ups and downs inevitably come my way. I always thought that when the universe throws particularly bad (hard and heartbreaking) blows your way, you take it in stride, knowing this too shall pass. I’ve also been aware of the fact that you can only take so much until, ultimately, you get to the other side.
Then this year began.
Writing this, I realize that my story could have had so many different beginnings. I keep going back further to try and think about how I can concisely or “correctly” capture this story. We all know that there is no “correct” way to examine your journey, but that doesn’t make it easy. In reality, it’s all messy. So by in large I’ve decided that this is a journey to cope with my father’s disease and deterioration, and my journey to support us both the best that I can.
I’m young. We all deep down know that as our parents age and life happens, we will have to make hard decisions and ultimately take on the responsibility of our parents care. However, nobody anticipates becoming a caregiver in your twenties. And at my age, we certainly don’t talk candidly about the pain and grief of caring for a loved one through these times.
In the Spring of 2015 my father was diagnosed with rare form(s) of Dementia called Posterior Cortical Atrophy and Cortical Basal Syndrome. Up until that point, I had known that my dad was struggling with some of life’s more precise tasks such as cooking for himself and driving, but I had no idea of the magnitude. A long time prior to this he had stopped painting - much longer than I even knew about. As a professional artist, this was a devastating blow to his entire identity. This is who he was for 50 years, an aspect of his life that actually defined him. For him, not being able to produce art anymore was crippling - a feeling I know I’ll never fully understand the weight of.
I’m also an only child of divorced parents, and one that lives in an entirely different country then either of them. And so, as my father’s difficulties increased, slowly but surely so did my caregiving responsibilities. It built-up gradually, but very quickly I was managing his entire world. I don’t think I realized or understood how much pressure I put on myself to provide the best possible life for him after his diagnosis. Always involving him every step of the way, conceding when he fought to maintain his independence long after he should have had in-home care. As of this Spring, I had been taking care of every square inch of his life for over 3 years. From another country I was paying all of his bills and taxes, handling his finances, and hiring people to take care of transportation, meals and his everyday needs. I was managing his career, organizing appointments for doctors, dentists, neurologists and optometrists, and ensuring he was safe…all while living in New York. Here I was trying to start life with my fiancé, launch a new career, and plan a wedding.
Last year, when the time came that he could no longer live in the house he had made his home for the last 9 years, I spent weeks combing through his archives and his body of work. I packed and staged what should have been the dream home and studio where he would work until the end of his days, sold it from my honeymoon, and moved him into an independent-to-memory care facility. The decision was ultimately his, and while it was excruciatingly painful for me to see how far the disease had progressed, we had heartbreakingly realized he needed to leave his home and be in a place where he could have the support he needed.
It was pure torture to watch. I cannot imagine battling a disease that robs you of your independence, traps you in your home, and prevents you from doing (in his case) everything you love. I set out to provide the best possible situation for him to be happy and to take care of every aspect of his life that he could no longer handle. But my hyper-focus served another purpose at that time. It allowed me to put aside my own sorrow and mourning of his deterioration and pragmatically chip away at task after task feeling like I had purpose and something tangible to hold on to.
If I’m being truly candid, I lamented that carefree time that was slipping away. I was on an airplane back to Canada every 3 weeks for more then a year. But I put my head down and pushed through. I pushed through the feelings of guilt for not dropping everything, quitting my job, and moving back to take care of him full time. To keep him in his house no matter the difficulties and obstacles. I felt like if I put every ounce of energy into making everything as good as I could for him, no matter the toll on my body, my heart or my mind, it would justify my decision to try to live both lives. One foot here, another as a full-time support and caregiver there.
I poured the grief of slowly loosing my dad into concrete tasks, and in the end it drained my soul. Somehow I didn’t realize it. I didn’t realize it when I was waking up 2 and 3 hours earlier in the morning to work on lawyer or insurance documents before work. I didn’t realize it when I was packing up and moving his entire life, going through old letters, preliminary sketches of paintings I know so well now - mourning the loss of him no longer being able to produce work. I didn’t realize it when I got a phone call this Spring saying that he was being rushed to the hospital because he was unable to swallow and was aspirating and choking. I didn’t realize it when they told me that he likely only had a few days to live and I needed to decide whether to put a feeding tube in or resuscitate.
Then, after weeks in the hospital, when he began to bounce back and the new reality and weight of next steps set in, I noticed. I felt the physical manifestations of the stress and my body began to reveal the toll I had put on it.
I realized it after his first attempt at discharge in a never-ending night while sitting beside his bed. He went into gut-wrenching, hallucinating, and seizing from the withdrawal of the palliative care drugs they had given him…and I was left paralyzed with shock. I realized it when I came back home shortly for a weekend of recovery, and couldn’t get out of my bed. All of these moments had added up and I shattered.
The realization that you’ve shattered is scary beyond words. I was suffering from intense PTSD, not just from watching his body go through the delirium and feeling completely helpless, but from the minute daily tasks associated with his care. I couldn’t make one more phone call, answer one more email or do one more ounce of research. I couldn’t go to battle one more time as POA for something that should be easy but wasn’t. I couldn’t do a thing. I had been “doing” for so long in order to cope with the deep sadness and rage I had towards this awful and unfair disease and I was done. I couldn’t do any more, I could only grieve with my entire body.
People find it difficult to be around people who are experiencing deep grief. I now understand why. I am also able to understand and accept the discomfort that it once gave me. I’ve learned not to ask “what can I do for you” and instead show up, leave a meal, plan a hike or reach out with a small note or message. Just leaving a door open to talk is enough. So frequently I couldn’t put the anguish and anxiety I was feeling into words, but on the odd occasion that I did, those open doors were such a blessing. I was able to walk through and pour out my feelings freely. Grief is paralyzingly lonely. It feels as though not one person in the universe could understand the pain you’re experiencing and you can’t possibly begin to speak or write the words. But now I know that’s not true, unfortunately there are people that do understand and this experience has brought me closer with a dear friend who has lived through the unspeakable, just like I was doing.
It is this community, these compassionate people and those candid, sobbing conversations, that allowed me to bare my soul and helped bring me back to the surface.
It has also made me realize the true power of love, of strength and of courage. Each time I was curled up sobbing in desperation by the cruelty of it all in the backseat of my car in the parking lot of the hospital, I would find the strength, pull on the pure love I have for my father, and find the courage to pick myself up and walk back in. I think minute-by-minute survival allowed the raw me, the real me to rise. When every moment feels like a struggle I finally embraced all of the vulnerabilities that surfaced, and for the first time in my life, I owned my limitations. I finally truly asked for help when I needed it, admitted when something was just too much in that moment, and said yes to friends driving hours out of their way to try and make one iota of each day easier.
Resilience is a strange thing. I’m a doer. If I can make a plan I will. It’s what calms me, and when you have a plan there are steps, there is purpose. It provides a path and a guidance system. Once you do all of the things on that list you get to the end right? Illness and death doesn’t work like that though, that’s for damn sure. I had put so much of my focus on these steps, but fighting through and realizing how futile the control we think we have is…It really doesn’t mean what it used to to me anymore.
Throughout this experience I’ve taken things one step at a time, the same as I did before, but I’ve learned not to feel like with each of those steps I deserve anything. At times, one step forward became a thousand steps back, but no longer do I lie crying in a pile cursing the universe for taking away those steps I “deserve” - the ones that I painstakingly gained. I still there lie crying, but I have learned to let the grief wash over me, feel the things I need to feel because they are all valid and real, and then once I’ve lived in every ounce of it, I’ll get back up and take another step. Because that’s the only thing left to do.
I think from the beginning my ability to think logically and pragmatically ultimately made my ability to compartmentalize easier then it should be. I needed to actually break in order to be able to listen to what I needed. What the person who had been going for so long and who was fiercely independent, what the person who could do anything and make everything happen actually needed. I am human, but I certainly didn’t realize that I hadn’t been functioning like that for some time. I have learned open my heart to acceptance of others and their unique journeys through grief, but even more so accepted own need to grieve. I cannot always be the strong pillar that I tried to be. The power I got from doing and the resulting self-preservation can only work for so long.
And so, I stepped away from it all. There’s only so much your body can take physically and emotionally. Once I knew that I needed to physically remove myself from the situation that I was ingrained in each day, I finally took time out for myself. It seems so simple doesn’t it? But when you’re doing and going and are needed in a thousand places at all time, it isn’t quite so simple. It was survival. But because of these brief moments and these times, I’ve been able to see clearly the different parts of this journey, the positive ones, the time I’ve been granted with my dad, and how these experiences have shaped who I am today. I went to the lake, I sat in the forest, I took the spare moments to say no more, and drove the 6 hours round trip whenever I could so I could be at our family cottage even just for a night to feel reconnected to my dad and to myself. I took a trip that really made me appreciate the world around us, that world my dad and I love so much and he taught me to appreciate. I took a step back. My dad has always been a solitary man and the places I feel the most connected to him are the places in our natural world where quiet takes over and you become connected to the trees, the water and the air. Every moment I could step away to be in these calm spaces reminded me of why I was taking on the impossible.
Being a caregiver is by far the most intense and challenging roles I’ve ever taken on, and I’m a strong ass woman! I moved to a new country for a man (now husband) without a job or citizenship, and somehow managed to make it out the other side with a successful career in a cutthroat industry, and more in love then I imagined possible. But changing your father’s brief, letting him kick and scream profanities at you while in a delirium, or making the decision (though a desire he had made crystal clear), to not to give him a feeding tube when you think he has only a few days to live? No, there’s nothing to prepare you for that.
I think it humbles you. I think illness and watching a loved one sick or dying is something that (obviously) gives you a different perspective on life, but it taught me that you are what you’ve created - the memories and moments you share with the people you choose to love. My own time processing how to be with this hellish hand my father has been dealt, evolves daily, but it has forced me to evaluate what’s really important to me. And that is powerful. To look at your life and know that you are doing something you can be proud of, to know without a doubt in your mind that you have given it your all. And that my father could say with every decision, every fork in the road, I made the choice that he would have wanted.
We got through yet another obstacle, a seemingly final one. My dad fought through the clouds, started swallowing again and was just recently discharged after spending the last 105 days in the hospital. What we thought were his final weeks and days were not. In fact, they were a part of our story and solidified not only my bond with my father, but the gratitude, friendship and appreciation I have of my mother for all of her unwavering support for me and my decisions. My husband and I moved him to a quiet, beautiful place with my aunt and uncle on the ocean where he can live in peace with help. I bought him a house there, a little slice of the world just for him. It’s quiet, surrounded by the forest and the ocean and the things that make us both feel calm and yet so powerful at the same time. I have learned to hold onto his short moments of clarity and I have found the lifeline of humour. I have found solace in my friendships and the deep breaths that are slowly coming more easily.
I know that there are very few people in my life that have any idea of the depths of helplessness and emptiness I felt throughout this time. It bred into anxiety and panic attacks and a level of hopelessness that I’ve never experienced before. It felt like I was being beaten to a pulp over and over again, all while trying to do the right thing - but never ever catching a break. Being a caregiver requires giving more of yourself then you have to give. And filling that role alone for so long leaves a lot of holes and cracks. I learned to fill up that emptiness and those cracks of despair with my tribe; my closest friends, my mother, my husband.
I also know unequivocally that surrounding yourself with strong, fierce female warriors is how I began to learn to cope. Time and time again over the last 4 years, I have been picked back up, fed, allowed to breathe in silence or scream in frustration by a group of women who while they can’t always know what to say, have surrounded me with unconditional love. Women are powerful. We are fierce. We stand up and fight. We choose whether the gritty parts of life make us more resentful and jaded, or we choose to become more aware that every person on earth struggles and experiences hard things. Empathy is uncomfortable, but I think we need to spend more time sharing in the discomfort and pain of others journeys so that we can learn how to support one another. We’re all here for each other. I am here for you.
I am Anna, and I am resilient.
“Why are we here if not for each other?”
Special Note: Anna’s story was brought to my attention by a close mutual friend. Kirstin is very special to us both and it was her self-less and caring heart that compelled her to ‘nominate’ Anna to take part in this project.
Kirsten, I know I speak for both Anna and myself when I say that you are an integral part of this collective tribe of women who strive to make a difference in the world. Thank you for humbly helping to align our paths and for always holding the '“pack”.