Wednesday, July 29, 2009

Taking Care of Mom

“Everything before this has just been life. Now is the test of your true character.” My nephew, Donald Goudey Solleder, speaking to me about me taking care of mom.
My mother, Sybil Sharp, turned 100 years old in April. She thought that once she got to 100, a goal she developed in her 99th year, she would lie down and die. Unfortunately for her, she says, that has not happened.
My brother and I, her grandchildren and great grandchildren, are grateful for her long life. In the last ten years, since she turned 90, she was present at my brother's wedding six years ago, present at my wedding three years ago, present at my long-delayed graduation from college, and saw photos of my son’s graduation from college. She has seen her great granddaughter, Tai, five different times. Tai and her parents, Donald and Nga, live in Southern California and my mother and I, and my husband, Ben, live in Central Washington. They have made the trip so that Tai would have a memory of her GG, or Great Grandmother. Mom’s other great grandchild, Shin, lives in Australia with my nephew and his partner, Kishiko. Mom has been able to see and talk to Shin on Skype, a technological advance that was not even a glimmer in an inventor’s eye when my mother was born in 1909.
I called mom this morning. I asked her how she was doing and she said, “My ankle is driving me nuts. I sure hope they can figure out what is wrong.” I reminded her that the doctors already know what is wrong.
“It’s vascular disease and lymphedema, mom.”
“Oh, yes, what are they going to do about it?”
I reminded her that her doctor had mentioned angioplasty, a procedure to open her arteries and increase blood flow.
But, she insists there will be no surgery.
Starting at age 90, mom would routinely refuse medical care, thinking that she was too old, that it would cost too much, and that she was going to die soon anyway. When she was 90 she fell down the stairs at her retirement home. The paramedics were called, but she, refused to go with them. She called to tell me she fell down the stairs, but was doing fine. When I arrived, I was shocked to discover that she was bruised from head to foot. I took her to the doctor, who dressed some wounds on her shin, but other than that she was fine, except for the broken wrist they discovered two months later. Every day I called her and asked her how she was doing and she said, “My ankle hurts but I’m doing okay.”
A week later I arrived to find her ankle black and blue. She had cellulitis and spent the next week with her foot elevated. For the next ten years, until now, she has had trouble with that ankle and foot, including lymphedema, which causes swelling, and the vascular disease, which is a narrowing of the arteries, which impinges blood flow. The lymphedema can be treated with support hose, but the vascular disease circumvents that treatment.
A few years later, mom was diagnosed with skin cancer. She was hesitant to see a doctor, but eventually had two surgeries two separate times for basal cell carcinoma. Both times she had procrastinated about going to the doctor.
When she was 95, she was having difficulty breathing. Her doctor prescribed allergy medications. After months of suffering, we insisted on a referral to an ear, nose and throat specialist, who diagnosed a tumor in her pharynx. When he removed it, he held up his thumb and said, “This is how big it was.” It was lymphoma.
He also said it would grow back unless she had radiation or chemotherapy. Mom refused, saying, “I’m too old, I’m going to die anyway.”
The tumor grew back within a few months. After another surgery, the doctor, with bedside manner befitting a general and appropriate for dealing with my strong-willed mother, said, “You will die a terrible death if you do not do something about this tumor.”
Meaning chemotherapy or radiation. She agreed on chemotherapy, and became the center of attention in a doctors’ focus group on how to treat patients with difficult diagnoses. She had several chemotherapy treatments before they determined that radiation would be the best course of treatment. By the time she started radiation, the cancer had metastasized into her skull. She had 15 treatments and was cancer free. My brother said it was a miracle.
As a result of the radiation, mom lost 15 pounds and became more frail. One morning she fell, but didn't tell me for a couple of days, when she was finally in so much pain she asked to go to the hospital. They put her on morphine to control the pain caused by a broken tailbone. The morphine almost killed her, or so it seemed, and after several days in the hospital we moved her to a retirement home that did respite care. My brother arrived to help. Mom told him she was ready to die and was going to stop eating.
My brother, thinking mom was serious, said, “Mom, could you wait until Annie gets here.”
I cried with mom. She told me not to grieve. And then I realized that mom wasn’t really dying, she just felt like it. The nurse confirmed my feelings and said, “It’s the drugs that make her feel like that.”
Eventually a caregiver told her that suicide was illegal in Washington State and mom started eating again.
After several weeks, mom was back home giving the caregivers hell for being in her apartment.
In early December that year, mom went back to her oncologist for a check-up, and complained to him about a backache. He was convinced that her cancer had returned, but now in another place in her body.
“Cancer has a certain smell, and given her symptoms, I think it has returned,” he told me out of hearing. Who was I to doubt a well-respected oncologist?
I asked, “How long does she have?”
“Probably a couple of months, but we’ll do a CAT scan to confirm it,” he said.
The family arrived to spend the Christmas holiday. We were stressed and grieving the pending loss of our mom and grandma and thought it was our last Christmas with her. It wasn't the first time I had grieved. My mom had pneumonia at 87 and was "dying" in my spare bedroom for a week. She recovered and was still driving at 95.
A few weeks after Christmas, we waited to hear the results of the CAT scan.
“It’s all clear,” the doctor announced, looking chagrined.
I think that because he saw so many people die who were so much younger than my mom, he went with his gut, which told him, incorrectly, that she was a goner.
I had a mixed reaction. Already, mom had dodged the bullet. Several bullets. And she had expressed repeatedly that she was ready to go. I was perplexed. Anticipated grief had once again taken a back seat to relief.
Four years years later, she still has no sign of cancer. Just vascular disease, which is not terminal, but causing her so much pain she wants to die.
Surgery may be an option, but will she go for it?

No comments: