*This blog entry was original written: November 21, 2009 while I was caring for my mom and my very best friend as she transitioned and left this world.
I did not know how limited the rest of our time together would be.*
Mom is comfortable. We’ve come to a phase in our journey where this is the most important daily concern… Is Mom comfortable? We have a hospice nurse coming twice a week and a nurse aid coming twice a week, on alternate days. Because they come in the mornings, I haven’t met either one, but mom’s oldest sister knows the hospice nurse and her second oldest sister knows the nurse aid. Both aunts tell me that both nurses are wonderful, skilled and knowledgeable. They have taught us so much, as my aunts have shared the knowledge with me. We’ve learned to roll Mom on to her sides and back every few hours to relieve pressure and prevent bedsores. We feed her and care for all her needs with grace, delicacy and skill. I’m hoping to meet the nurses next week on my week off.
And in case you didn’t already know… Mom and I have an extremely compassionate, giving and supportive family. Not only have my two aunts been here, by her side from the very beginning of this diagnosis, but without hesitation they have jumped right in and taken nightly and daily shifts to stay with Mom. We’ve arranged a schedule to help us organize our other responsibilities around Mom’s needs. Other family members are pitching in as well. Two of Mom’s nieces have offered to put their names on the calendar to cover times they can stay with her. It’s a big job and not one for everyone. Caring for someone who is bedridden is a huge job. It not only takes patience, but both physical and mental strength. We also know that Mom’s wishes were that she be surrounded by only family at this point. She had seen with her sister who passed from breast cancer at 41, her brother who passed from AIDS at 40 and Grandma’s care when she passed in 2005, that there comes a point where only immediate family should be the caregivers.
Even though I will always feel Mom is being taken from me too soon and feel some resistance to fully accept it, I am trying to think logically and implement what she would want at this point of her journey. I have imagined and visualized in my mind how things would and should go. I have thought about what she would want, how I would protect her, how I would make sure she was comfortable, peaceful and respected when the time came.
No matter how optimistic I’ve been…how cheerful I always tried to be…the fact is I have been dreading this since May of 2007 when Mom came over to my house straight from the Pulmonary doctor. She walked in crying and so distraught. She could hardly breathe. I knew she had a follow-up appointment that morning, but because the doctor had told me immediately after her outpatient bronchoscopy procedure that “it didn’t look like cancer”, we didn’t feel she needed someone with her at the follow-up appointment. So she went alone. Alone. Alone when he looked past her and said, “Where’s your daughter?…..I was hoping you would have her here with you today. It’s always better to have family with you…..” And then proceeded to deliver the most feared news…“I’m so sorry…but…it is cancer.”
They had found cancer cells in the lab work. He hadn’t done a biopsy but had done a “scraping” of the interior left lung and the lab showed cancer cells. She drove straight to my house. Her first words to me through her tears and shock, as I opened the door, “I’m terminal…. I have cancer and it’s bad…”
I couldn’t speak. We sat on the couch and I just held her while she cried. I was in shock. I had no tears because in my mind I was saying, “NO…NO….she didn’t hear him right….I need to call the office and find out exactly what he said…..this is wrong….WRONG!”
But looking back now, that was in fact the moment I started to panic and visualize where we would one day be…dreading where we are today. People would try to comfort me. They would say, “It might not be that bad…. she might defy the odds and live for another 10 years…. you never know…don’t think THAT way…” How do you NOT think that way? Once we heard the diagnosis, it was as if I developed a photographic memory when it came to ANYTHING about lung cancer. I dove in head first. I remember that first summer checking out six library books and taking them all to the cabin. I’d lie in bed all night reading everything I could on stage IV lung cancer. At home I would research online till the early morning hours…. I joined web sites, read medical journals and found online support groups. Mom never wanted to know what I was finding out. She just let me research and if she had questions, she would ask. Otherwise I knew not to tell her what I had discovered. It was an unspoken agreement between us. If I suggested she do something, she would just do it, trusting what I had read. When the doctors talked to her about various treatment options, she would ask my opinion. She trusted me and knew I would put my feelers out there to my support groups asking for information or opinions. She cried when she received the MRI results this past July. She was so scared of it spreading to the brain. I told her it was treatable. I explained that this is what lung cancer does, but that WBR (whole brain radiation) has a very high success rate, which her oncologist immediately ordered. I stayed optimistic and positive. Because it’s what I believed…..
But in the back of my mind, I was preparing myself for the worst possible thing I could imagine…. losing MY mom. Losing Mom. Her laugh, her unconditional love for me, her smile, her sense of humor, her passion, wisdom and knowledge about art, politics or history… her upbeat happy voice over the phone every single time I called. “Hi hon!” I can hear it so clearly. But the future was unimaginable. And the fear and knot in my stomach has never left. It’s been there for 2 years and 5 months. Except in all of my mental preparation, I never saw it this way. I never saw brain tumors taking over so quickly…. I never, ever imagined this…. I never imagined she would leave me mentally before she left me physically and spiritually.
Even though she never wanted to know her prognosis, one of her pulmonary specialists told her that stage IV lung cancer patients have 12 months without treatment and 36 months with treatment. But what I imagined is that we would fight for years. I honestly believed she could have 3-5 more years. This was Mom, after all. Everyone knows how strong she is. What a powerful little hummingbird she is. And when the time came, I imagined that we would have tried many different chemo-cocktails, possibly radiation, a clinical trial, holistic treatment… we would have tried anything and everything until her body became too weak or sick to continue. Mom would either accept it or be too tired to continue fighting and tell me, “I’m too tired. We’ve come to the end….” We would talk about our lives together and what we have been grateful for; I would tell her how sorry I was for all the attitude I’ve ever had with her AGAIN; for the arguments I started; the teenage years that brought stress and anxiety and any other time I thought I knew more than she did. I would tell her that I was sorry I hadn’t been more understanding when she had sunk into depression following her sister’s death, or her brother’s or her mom’s. And sorry for all the times I was too self-centered and too busy to just BE there when she needed my love. And sorry that I hadn’t listened more and talked less when she just needed a friend. And I would hear what she wanted to say. Anything. Everything. Or just sit in silence with her while we were just present. Whatever she wanted. But it would be on HER terms. Her way of saying goodbye. She would find peace and some how, some way it wouldn’t feel as though she was being torn painfully from me.
But that didn’t happen. We never had that warning that this was it. Or maybe we did and I just wasn’t paying attention. Looking back now, it seems like she just slipped away into this permanent sleep so quickly.
People try to be supportive and say things to help me feel better. They try and tell me how lucky I am that I had over two years with her. But how in God’s name am I supposed to feel “lucky” when my mom is dying from cancer and being taken away from us? I don’t feel lucky or fortunate. I wanted 5, 10, 20 more years with her. I don’t see the “good” as people keep trying to point out. She’s being taken from me. Period. She’s only 61. Her granddaughters are only 7 and 9 years old. My youngest daughter, might not remember her. I don’t feel fortunate. Not now. I know people are trying to help….but I’m not there yet.
So here we are. In this new phase and I’m comfortable here. I’ve finally accepted this status. No, she’s not talking and responding to us these days, but she’s here. And I can hold her hand or kiss her head. I can love her. I can care for her. I can feed her and change her and make sure she’s comfortable. I can read her facial expressions and see if she’s cold or in pain. I have come to accept where we are, even though this is not what I prepared myself for.We have all settled in to our new responsibilities and new ways of loving my mom.
What literally stops my heart … is imagining and trying to prepare myself for what comes next….what the “next phase” is…..