October 2016, my sister Julie and I are sitting with my father in his beautiful light sunny room at the hospice. He has 3 to 4 days to live.
He is there, he is listening and feeling our energy. It is quiet. He is calm, no pain. People have been kind, explained to us every step of the ending.
End of life; so precious.
Julie is looking at me. She knows that, this precious moment is going to happen to her sooner than we hope. “I hope you take care of me as good as you are taking care of Papa. I want the same treatment. I want to spend my last days here.” Of course, I said, before I went to kiss my big sis on the forehead.
Julie was diagnosed with breast cancer in 2010. She did the classic rounds of treatment. At that point, I had just opened my first restaurant, working around the clock. I wasn’t there. She maintained that she could handle it. At age 30, with a 3 year old girl, she will beat this. And she did!
In 2012, my sister takes me under her wings, as I was falling into a major depression. She lets me rest, cares for me and welcomes me into her home. She procures space and time for me to heal, for me to grow and take care of myself. Without this crucial episode of my life, I wouldn’t have been able to be the caregiver I am and was to my sister.
At the end of 2012, Julie is diagnosed with metastatic breast cancer stage IV. The illness has spread to the bones. Fortunately, it is slow and treatable palliatively. After a few surgeries and treatments, we enter the palliative care system with the understanding that there is no cure to Julie’s condition and that Palliative does not equal to End of life. She has to accept and face this new reality, that, most probably, she will die of this illness. It is not going away. She now has to learn to live a full life with a chronic cancer. At the age of just 33.
At this point, I am home with her. Taking care of her and Eva, her daughter. It is not easy. Eva wants her mother. And Julie has to accept the fact that her little sister is the one taking care of her. I did not realize it then, but now I know that at the same time she was grieving the separation of the father of her child. Grieving her family. Grieving her healthy life. I was not supposed to be in the equation. It brought a lot of tension in our relationship. I felt she was fighting back at me; the little sister isn’t supposed to take care of the eldest. She wanted me to live my life. She was so proud of me and what I had accomplished.
It gets harder for us when they get better. You don’t choose to become a caregiver, it just happens. The hardest thing is to find the balance in between the good times and the bad. Finding your place. Not trespassing the boundaries, knowing when to let go and to let your loved one take back their lead.
When Julie was feeling good, she was taking back control of the household, of her life. Living with chronic illness is all about control. Learning to lose it and learning to gain it back. Control of your life, control of your body. Julie being a leader, when she felt better, I couldn’t be in her way. It would be a huge source of conflict for many years. She needed to gain back her confidence, as I needed to know when to step back, sometimes within a blink of an eye. She had the urgency to live. It was a complex time in our relationship and one of the biggest challenges to overcome. We matured with the illness and got through it.
She managed to be stable for almost 4 years. She had found a new voice. Investing her time and care in her new cancer community. She did a lot of volunteer work with young adults with cancer, and worked on different projects in the health care world.. She wanted to raise awareness on metastatic breast cancer, and break the isolation of the illness that occurs when you are a young adult.
We lived like this for a few years. Her investing her time in the community and enjoying every moment she had with her daughter. And me, hanging around the house, working my way job to job - organizing my life with hers in mind, so she would be able to live hers at the fullest. She did not wish that for me. She wanted me to be whole and live my 30ish year old woman life as someone normal would imagine it. As a caregiver, it was impossible for me to do that. Giving her care and comfort was my first thought, was my idea of living my life, my story. As long as I respected my boundaries and stayed truthful to myself, I would be all right. Living with her meant that I needed to read between the lines. I needed to be aware of the sound and beat of the house. It made me feel good to be there, to be useful. It made sense to me to be a multi-generational household that values community, respect and love. It made sense to me to be “out of the box”. I’ve always lived my life to the fullest, and still did, but this time in a different setting. I was living a full life in our little family community.
Outside of the household, she was looking great, but inside…
The reality of living with a chronic cancer is stark. She was exhausted, constantly in pain, always managing side effects of treatment and keeping what was left of her patience for Eva. That meant taking it one day at a time, feeling overwhelmed with everything and countering that with doing only what made her feel good, which in turn made her feel bad because the stuff that needed to be done just got more and more overwhelming. A difficult spiral to navigate.
Julie hardly complained of her illness.
When she did, it was time for me to step up. I was the only person she would allow to take care of her. I knew the beat of the household; I had the capacity to adapt easily. She didn’t have to explain what she wanted or needed to me. I just knew what to do, because I was there for all those years. I knew who to call, how to schedule her appointments, I knew Eva’s schedule, I knew the food she liked and so on. It made it easier in moments of crisis and when she needed someone to advocate for her. Hospital walls: we climbed together. I’ve learned so much just by watching and listening to her deal with the health care system in the past 10 years. I hope she understood why I stayed and subtlety organized my life around hers; it was to take better care of her when needed. If I would have gone along with another kind of life, and not integrate myself in her home, it wouldn’t have been the same. She wouldn’t have let me in so easily when she was ill. All those years, we were building trust, partnership, understanding. It takes time, patience and observation to be a caregiver.
I only understand this now, after her death. I have no regrets.
You don’t realize it when death knocks at your door.
October 2018, Julie has been ill for a few weeks. Not getting out of the house, not eating, feeling a general unwellness. She did not want me to accompany her at the doctor and said she was fine. I can only assume how much she was underpainting the picture to her oncologist.
After a few days of fever, we go to the emergency room. She’s having new and old pain, feeling more and more shortness of breath… It takes 2 weeks of discomfort and high anxiety, for the doctors to finally figure out what is really happening with her. We already knew the cancer was growing in the lungs, but now it seemed to be spreading in her peritoneum. One super harsh double chemo later, Julie loses partial usage of her legs. She cannot get up alone. She is scared. After having been hospitalized for three weeks, she doesn’t feel she’s getting the care she needs. The cancer anxiety is getting stronger and stronger after multiple errors from the nursing staff and the doctors; she does not trust anyone. We do everything in our power to get her back home, and we do.
November. What do we need? Oxygen, meds; pain control, constipation control, nausea control, acid control, anxiety control, chemo effect control, blood control… Medical equipment; wheel chair, walker, commode, bathroom chair, shower carpet, special pillow, hospital table, special recliner… We need a homecare to assist with her care. Soon enough we need another nurse from a non-profit organization to palliate to the homecare nurse. Push, push, push to get every immediate need in order.
I still have all my notes from the past 8 months, hour to hour, of when she was staying at home. Organizing everything to hospital visits to everyone visiting at home, medication, food, cleaning, school for Eva. Eva! Oh, my Eva…
Christmas. Brain tumor.
January 2019. Radiotherapy for the brain tumors is successful, she’s on a chemo break. The first chemotherapy was killing her. We decided to change hospital, as she thought best to get fresh new eyes on her health. At this point, we are just riding, constantly adapting to what’s next. Every week is different. We managed to have a great palliative team at home and a great treatment team at the hospital. I’m a professional cook; working in a team, communicating and being efficient in action is what I know best. I was living in the action. Day to day actions.
In February, she started a new treatment. Ups and down. On her good days, I would rest like a baby. On not so good days, I would pull up my sleeves and get her what she needed to feel better.
Reflecting on it all, I wish I was told where the limit was. In the action, you have no limits. Julie seemed to always be pushing hers, so was I. I needed to follow her rhythm. If my sister and I would have a discussion today, we would both agree that we should have brought her to the hospice way sooner.
She wasn’t ready, nor was I. We didn’t have a timeline. She still had hope. I didn’t want to dismantle that hope.
I remember my pivot nurse asking, “Can you still take care of her at home?”, I didn’t know what to answer… “Yes, for today! But tomorrow, I don’t know.” What does that even mean? If, Julie and I would have a discussion now, we would talk that we should have integrated our homecare team a bit more towards the end. But we didn’t know it was the end. As the last months passed, Julie felt better, she was taking back her control; we had less and less needs for home visits from the medical staff.
March and April: She was starting to get back on her feet, and I was even thinking of going back to work. She could more or less manage her medication, and I could step back.
Until one time, in May, she said, “Isabelle you have to help me more, I’m sick.”
What? I was thinking. How could she say that? I thought I was helping her by giving her back her space, her control. But no. I had to take back the lead quickly. I realized then, that she wasn’t taking her pills right. She had trouble swallowing because she always felt full, so by the time I was giving her the evening meds, the morning ones were still on the nightstand.
In those last months, I felt that she needed to rebuild her confidence. Being the little sister, I didn’t want to over step boundaries, didn’t want to upset her. I was still sleeping next to her, but during the day, she needed to feel like a grown woman.
Being a young mother living with an illness; it’s hard to face the reality that you can’t be your family’s caregiver that every inch of your body demands to be. Her ego took a hit. I was walking on eggshells.
Julie was waiting to get approved for a new treatment. She was so hopeful. So, we kept pressing on, and we went passed our limits. Hope does that.
The two last weeks at home went extremely fast. In the moment, bringing relief to the loved one is all that mattered. I was constantly on the phone with all of our nurses. One to get prescriptions and doctor’s appointments set up, other to pay a home visit, another one for evening questions on how to relieve this and that symptom. It was Chaotic. An organized Chaos. The adrenaline gets so high that almost two months after her passing, I still feel it run through my veins.
I am grateful to have had the relationship I had with my three nurses. Building a good authentic support system with the home and hospital care team is key for the person living with the illness and the caregivers.
But yet again, far was I from the idea that we were at the end.
I wish someone would have talked to me more about the end of life. As much as we thought we knew, we didn’t. I wish someone had informed me more of what comes next, after her death. The emptiness, the feeling of being lost and without purpose. I wish someone would have encouraged us more urgently to talk about her will and all of her paper work that needed to get in order, when she was mentally able to do so.
Death, is still the most difficult subject even when it’s right in front of you. Talking about End of life care and palliative care is still so taboo. I felt that the professional staff was still not comfortable talking about it either – maybe they too had hope that she will pull through. End of life is such an abstract situation; I didn’t know what questions I was supposed to ask and assumed that if they weren’t addressing it, it must be because we’re nowhere near yet. That was not the case.
In a way, having been blessed with Julie’s presence for almost 10 years after her initial diagnosis, with her resilience through all the scary parts, with her reassuring confidence that she would continue on – none of us believed that she had reached her limit until the very last day. Everyone hoped for just one more miraculous recovery. What I do know is that Julie went over her limits many times – too many to count and she did it for Eva. In the end she finally needed to rest, but not before she planted seeds of strong community and family values and was confident enough that Eva would be well taken care of. In the end, it was all for Eva.
Now, after 35 years of living hand in hand with my sister, I have to learn to live without her. Nothing could have prepared me for that. But I’m here, so I’ll try.