This week is always a hard week. This is the week, 10 years ago, I watched my Mom die. After you've cared for a loved one who is dying and watched them actually die, you're never the same. She had ovarian cancer. The woman who was never sick. 8 months from diagnosis to death. As one of my Aunts said, we had to watch her die inch by inch. When we got the news there was probably nothing more to be done other than an attempt at one last chemo that might extend her life a bit, I took a leave from my job. That decision was one of the easiest I've ever made in my life. I had to be there for her. Nothing else mattered.
It took a long string of years to stop remembering her the way she was when she was sick and dying. Now I can usually remember her incredible smile and contagious laugh, her voice and her incredible positive energy. But the month of January and first week of February are usually filled with glimpses and flashes of memories from her last month. I've learned over the years to let them come and not push them away. I have always felt honored that I could be a witness to her dying. It is the ultimate experience of love. She brought our family together in her dying just like she always did in her living.
There were so many medical complications with my Mom. And, she was determined to be at home. But it was all so complicated because of her medical status, the fact that Mom and Dad lived in the country and that she was scheduled to have more chemo. Did you know that you can't put someone on hospice service until they are "technically" not receiving treatment anymore. The last chemo she was hoping to get (which she couldn't get yet because she had an infection from her I.V. port) was considered treatment. That meant home health care was the only support service available. But it is limited to medical support. That meant a nurse came but only stayed for a couple hours. No other support to speak of. No social services, no grief support, etc. So my siblings and I became her everything staff. That role took precedence over being her daughter. I would take day shift as I wasn't working. In the evenings my brother or sister or both would come. Mom had a nutritional supplement pumping into her body by a system run by a small battery pack. She had to have antibiotic pumped into her I.V. on some schedule like every 3 hours. But before you could put in the antibiotic, you had to inject some drug that would clean out the I.V. (I think I remember it as Heperin). One day I couldn’t remember if I had flushed her I.V. before I injected the antibiotic and other drugs. I panicked. I thought, I came to care for my Mom and now I’ve possibly killed her because I’m not a nurse and I can’t remember if I did it right. Mom also had a digestive tube surgically placed in her stomach which drained to the outside as the cancer had cut off her intestinal tract. She could still eat by mouth, she just couldn't digest anything. There was so much to keep track of and so much stress about not doing anything to make her worse. I could go on and on about her medical condition but I feel like I've invaded her privacy by giving some of these details because she was more than a body. She was an incredible spirit.
Mom didn't die at home as was her one and only wish. It seemed every medical intervention used to "help her" caused some infection or some other reaction or condition. By the latter part of January, my 3 siblings and I were having to double up at night because she wasn't sleeping . That meant each team did every other night. One of my night’s away, we got a call at my sister’s. My brother and younger sister said Mom was in tremendous pain. Mom was one tough cookie. The doctors always called her stoic. By this time, she was also on a morphine patch. And she was screaming. They had to call 911. The paramedics came. I found out later one of them was an old friend of mine from high school. For some reason, that made me feel a bit better. Because Mom and Dad lived out in the country and it was the dead of winter, it took awhile for the ambulance to get there. They got her in the ambulance and had a good 45-60 minute drive on snowy roads before they got to the hospital. My brother and sister rode with her. The only thing that seemed to stop her screaming was singing a childhood song called “I’m a lonely little petunia in an onion patch”. The emergency room identified what was causing her pain, gave her some drugs and wanted to send her home. They were done with her. Nothing more they could do for her. She was dying afterall. My brother called again for the input of my sister and I. We all agreed he would do whatever it took to get them to admit her. Our long-standing family physician was able to get her admitted after some strong arming, begging and I think quite honestly some threats.
This was the last time my Mom saw her home. She died a couple weeks later. One of us still stayed with her every day and every night. One morning, after I had spent the night on a pull out hospital chair beside her bed, she woke up and looked at me and said, “quit watching me”. She was a bit mad. I thought it was said out of paranoia because of the pain killers. But I left the room and was a bit hurt by her comment. Then I realized my Mom hadn’t been alone for at least a month. Can you imagine? Having no personal space, no personal time even when you’re dying? She probably felt smothered with too much love.
The hospital had a brand new nursing home and hospice wing. She at least had a private room with a window. Someone brought her a pink angel that we hung in the window. Someone went outside and made snow angels in the snow banks so she could see. We had a birthday party for my Grandma in that room. My aunt came and put nail polish on Mom’s nails. Mom never polished her nails. Someone else gave her a beaded necklace that she wore for awhile. There were so many people who wanted to come and visit with her one last time. We eventually had to make the decision to tell them no more, only immediate family.
Did we open the windows for her to feel the cool air? I think I remember doing that, but maybe the windows didn’t open there. I remember putting ice chips on her chapped lips. I can still hear the crunch as she tried to chew them. Eventually she decided to stop all liquids. The doctor said he had never seen anyone last more than 5-7 days without liquids. My Mom lasted 9. She didn’t want to die. She never gave up. She fought it with everything she had.
It snowed the day of her funeral. Mom loved the snow. My best friend had flown in for the funeral. My husband drove us to the church. We parked facing the church watching all the people go in. I couldn’t get out of the car. The church bells were ringing. I sat in the car and cried. My friend and husband just sat quietly with me until I was ready. They didn’t try to get me to move. It was a moment of love from them I will never forget.
None of it was fair. Not to her. Not to us. Not to anyone who loved her. Mom died at age 64. On her own Mom’s 90th birthday. Grandma said she didn’t understand why it wasn’t her instead. Life has never been the same for any of us who loved her.
Rest in peace, Mom. I love you.
