On Grief
It’s been well over 2.5 months since I’ve written. The last time I was present enough to write was one month following my final skin removal surgery. At that point I was filled with hope, possibility and excited to see what the future would hold. But, as it turned out, which sometimes it does, God and the Universe had different plans for us. The plans have shifted, somewhat tremendously, for our entire family. Everyone is finding their new normal and it’s pretty safe to say that each of us do not even know what those words mean anymore.
On April 24th I received a phone call that my brother Thomas was in ICU for reasons that were unknown in that moment. I flew down to South Carolina, ahead of my scheduled move, to be with my family. I packed a bag and left NY with a suitcase full of spandex and compression garments, still recovering from surgery, and went on my way. Over the course of 16 days, which included being moved into Critical Care with a diagnosis of Chronic Respiratory failure and hypercapnia (when the body produces too much carbon dioxide and it’s not getting kicked out of the body— it causes a narcosis — aka a scary drugged up state where your brain stops working), Thomas eventually woke up and started to breathe on his own again. This event didn’t come without shaking our world. It didn’t come without scaring all of us. Not without the breakdown of my mother’s body and spirit and an instant decline in my fathers dementia— with increased confusion, crying, combativeness and a cessation of daily living tasks that he was managing, at least partly, on his own. We are currently living in a home full of walkers, oxygen tanks, life saving breathing devices, diapers, visiting nurses, therapists, palliative care doctors and hospice aides.
The day would inevitably come where I’d have to move closer to my parents. I expected it. I planned for it in the last two years, slowly letting go of my personal belongings, releasing my life in Mexico. I changed gears and resolved a slower life in service of my family would be the way forward given dad’s dementia and the lack of a primary driver in the house. But I couldn’t have ever imagined, we couldn’t have imagined, that we would be where we are now as a family. I didn’t dream I would be a caregiver to 3 adults, each with varying needs and conditions. It literally happened overnight, one thing after the next. Our days have been filled with fighting, anger, less than God’s grace and with a grief that feels— in many hours— insurmountable. Seeing my mother’s loss of independence, day in and day out has pained me so much that I burn inside with rage. And though Thomas is making a very strong recovery, there are unspoken words and emotions that I feel him carry. While my father sits in complete silence and doesn’t move or speak much in his waking hours. I orbit the space, every room of the home, walking around their bodies and walking through and around the ghost of my self.
The constant cooking, cleaning, laundry, pill maintenance and negotiations, arguments, scheduling, driving to and from doctors appointments, falls and calls to 911— is constant emotional, mental, spiritual and physical labor— for each of us. Trying to create a sense of safety and joy inside and outside of the home has been a struggle. There is no consistency each day. Everyday is the same day, but also so wholly different. The day orbits around care and within the boundaries of my fathers world. Entering his world, living in it, could only be likened to living in a house of confusion. Daily, I watch my mother struggle to see her husband this way. I watch my brother sit in his own uncertainty and fear of seeing his caregivers lose their abilities. At least that’s my interpretation of the booming quiet that fills the living room. We’re all losing parts of one another. Then there is me, the booby prize everyone is stuck with— the human glue stick with her own fears— trying to hold things together and drowning.
Caregiving is the hardest work I’ve ever been challenged to do. It is more than service, it is giving life to others, a life you had— the energy, the time, the emotion, parts of your own health. Most days it feels impossible— and infinitely more difficult than any job I’ve previously had or career change for that matter. It is lonely. It is isolating. It is riddled with guilt over feeling your own feelings. It is a psychological trip to live in your family home as an adult who has grown and changed— and yet feel scared, unchanged and full of trauma that you believed you’d escaped forever. Maybe we never escape our trauma? Maybe we only ever learn to live in it?
Months ago, when I was writing to you, I was ready to join my mother and brother in support of my father. I imagined my mother and I taking drives, getting her out of the house— rebuilding a childhood I didn’t have with her. I imagined car rides with my brother, working on our relationship, movies, lunches and laughter. I imagined playing games with my father, taking him out for ice cream and listening to Elvis— but I’ve been met with something completely different. And they have been met with a different Tina, no longer their daughter who infuses joy and laughter into the room— in some moments maybe— but there is a distinct shift that happens in a family, in people, when illness and needs overtake a household. Roles change, emotions shift— you only have so much left to give one another— to yourself— yet you wake up and do it the next day— all over again.
I’ve been given the advice to eat well and exercise— to trust that things will get better. I wish it was that simple. There is an undeniable grief that comes with caregiving. A grief that has more dimensions than I can express. It comes with mourning the life you had, the life you wanted, the dreams that felt so close— along with letting go of everything you thought would be true for you. It comes with the weight of uncertainty and anticipation of what will happen next. It comes with being an adult and understanding your parents are human, not invincible, full of flaws and lives with deep pain and insecurities, that existed long before you did. It comes with carrying their very stories in your body and seeing them struggle. It means embracing feeling helpless in the wake of their needs, aging and varying inability. It’s beautiful torture. Because although I am writing this, I know that I am privileged to have them— to love them— to see them— and I am also exhausted. Love is not the absence of anger and frustration— and all the emotions we want to avoid— love is the presence and acknowledgement of the complete and utter fucking messiness of life. It is recognizing the disaster and waking up to confront it again. It’s yelling. It’s talking about it. Talking about it again, not resolving any of it and still feeling the love and grief mingle inside of your heart and soul while it tries to break and suffocate you. But the thing is, you don’t give up.
Unlike having children, watching them grow and seeing them change, caregiving is the exact opposite. Making your family comfortable in their aging and illnesses is dark. I’ve been told, it’s temporary— these hardships and moments. And while I know that it is, it doesn’t make it easier? I’ve prayed to God for clarity, strength and answers but I’ve come up with nothing. Some days are softer, some days there is a murmur from him and other days I get in the car and think about leaving 3 life alerts on the table and booking a one way ticket to Mexico— but running, hiding— it solves nothing.
We can’t out run love or grief. We have to work through it, in all of its torture and triumph. Triumphs we may not see or understand until we are years and years beyond living through moments like these— and we find ourselves alone, sitting by a window or washing dishes, and finally understanding some of, likely not all of it. We come to understand why we had to go down a certain path.
While I’ve been told that I can do this and that no one could do this for my family but me, I know it’s true, but it’s also not helpful. I’ve always been responsible and well able. While I’ve been scolded for being angry and told to smile more— I don’t think we are ever prepared for unexpected changes— are we? Can we guide others on how to grieve? How to process hardships and loss while the people you love are still alive? Would I put a timeline on a friend losing a parent? Stop being upset and mean already, Sarah, it’s been 8 weeks since your mom died? No.
Caregiving and a change of life is something to work through like you would any death. Any passing. The death of our lives and plans, of our own unique definition of freedom, of seeing my mother crumble and my father play peek-a-boo— my brother frustrated from living a life on medications and machines. This is not something where I can find it in myself, in this moment to say “Thank you, God. I know you’re doing this because there is more for me.” I’m not there, not yet. I’m coming around to accepting where we are, and giving myself grace for being a feeling human with a range of emotions. This has been the greatest gift I’ve given myself— well more substantial than morning walks and eating well. For a large part of my life I ate to fill loneliness. I ate so I wouldn’t feel. I ate out of fear. I stayed silent and was afraid to name the reasons I ate or my why’s. I will not sit in a room eating, numbing and not feeling while this change of life is experienced. That’s the part of myself I refuse to let go of— she took to long to get here.
That said I am finding ways to manage my anger and grief in the last 8 weeks. I find myself sitting in my room and breathing. I put my legs up the wall and I lay in silence— a silence so still I can only hear the shallowness of my breath. And for every moment of joy I recount from the day or the week— the drive, a bite of a pastry, the song on the radio, an indulgent cup of quiet coffee, the tv show we watched together, bonding over ice cream sandwiches— there will always be a new challenge to confront and wake up to. The financial strain, the desire to leave but knowing that I won’t— the burnout and the wondering “Who will help me in 30 years if I need it? Who is going to love me this much to sacrifice their time and life?”
No one. That’s my answer. How lonely. How true. At least right now. This is also grief.
So while I pray to God that he will protect me and that I will never need help— I do wonder. I wish cooking and walking could mask the grief and unease. I wish the beach breeze could blow it away, that the blue sky could swallow the worry whole.
But it doesn’t an it won’t. It’s an inside job, one I have to work on at the same time as everything else. I hope that if you’re going through this, or something similar, that you do not lose yourself. I hope you let yourself feel angry instead of practicing toxic positivity or optimism because you have been told to. Caregiving and sitting in anticipatory loss has the ability to strain and stain all relationships, finances and thoughts of the future. I wish I could say love changes all of it— maybe it changes some of it. All I can pray for is a new day, a new chance to start over each day. I hope tomorrow will be better. I hope that you will be better too.