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Saturday, November 6, 2010

Feeling Better

I spoke to Mom on the telephone today. Her voice sounded a little stronger and I could tell that she was breathing better. Of course, I have no way of knowing how long it had been before she took her last breathing treatment. Generally, her speech is much stronger and her breathing easier after a breathing treatment.

Mom said she was having a pretty good day and for that I am thankful. A nurse sent by Social Services from the hospital comes in twice a week to give Mom a bath and wash her hair. My mother really likes the young woman, and she seems to like my mother as well. Although taking a bath is something we all take for granted in life, my mother does not. Regretfully, she realizes it's one more part of her dignity that is being slowly chipped away.

Back in September, shortly after Mother was released from the hospital, the first thing she wanted to do was to take a bath. After purchasing a 'shower chair' that fits into the bathtub, my sister, Brenda and I carefully undressed Mom and helped her slide onto the seat from her walker. The tub was filled to the chair with warm, relaxing water. I noticed how Mom's skin has become extremely fine and delicate, almost like crepe paper. Carefully, I took the wash cloth to squeeze tepid water over her emaciated body. I didn't dare rub her with the washcloth or I surely would have hurt her.

Brenda kneeled down squeezing one wash cloth full of water over Mother's back while I did the same over and under her arms. We both tried to keep her as warm as possible, but she shivered uncontrollably. I sensed that she was embarrassed. "I can't believe my girls have to do this for me," she said, forlornly. "Oh, Mom, I answered. "How many baths did you give us girls during our lifetimes?" I asked, trying to ease her inhibitions. "I guess you're right, " she responded. "I did give you two a lot of baths in your day," she replied with a weak smile of memories long ago. She went on to tell the two of us how good the bath felt to her, saying it over and over. She "oohed and ahhed" each time we squeezed the soothing water from the cloths over her body. At that moment in time the simple joy of getting a bath meant more to our mother than anything else in the world.

Since I left Arizona, it's been the nurse from the hospital stepping in my place. I was glad to hear how well the two of them got along. Not to mention the respectful care this person was bestowing upon my mother. "She even put a few curlers in my hair," my mom said, pleased. "I bet you're beautiful again," I stated. "I don't know about that", she said, "but I sure do feel a lot better."

I hung up the phone feeling a little upbeat. Mom's day had been 'pretty good.' It was all I could ask for.

Friday, November 5, 2010

Losing Mom

I'm losing my mom: to cancer.

It's been several months since I was told by my mother's doctor in the cold corridor of the hospital that she was dying of terminal lung cancer. I live far from my parents in St. Louis, Missouri. They live in Casa Grande, Arizona. It's a small but growing town between Phoenix and Tucson.

I planned a trip to visit Mom for Mother's Day this past May (2010). A week earlier my dad called with heartbreaking news. A few weeks beforehand Mom had gone in for some blood tests. "One of them indicated cancer," my dad said. I could tell from his voice that he had been crying: a rare trait for most men. But, not for my dad. He's one of the most sensitive and gentle men I have ever known. I could never begin to say enough kind things about him, nor have I ever met a person who didn't like (or love) him. Dad went on to tell me that a biopsy hadn't been taken yet, so he still held out hope. My heart hurt for the pain he was going through.

After I hung up from from my father's phone call, I fell into my sofa and cried my eyes out. My mother was only 74 years old. This was 'young' by today's standards. I was not ready for this. My relationship with my mother was often complicated. Sometimes good or even great, but often difficult. Mom had an extremely troubled childhood, the effects of which she carried with her throughout her entire life. As I grew older I began to understand why she did certain things, or behaved in ways that didn't make any sense at the time. I loved my mother. I had forgiven her for everything in the past because I grew to understand that she did the best job that she could. And, I believed she had forgiven me for not understanding until my later years. Now that I might lose her, I felt tremendous sadness for all of the wasted time between us. I tried to focus on waiting for the biopsy results. I hoped and prayed that Mother's blood test was wrong; a mistake of some sort.

A week or so later, when I boarded the plane for my Mother's Day visit, my heart was full of dread. The flight that day seemed much longer than the usual three and a half hours. I was nervous and couldn't get comfortable. Always an avid reader, the words of my book blurred on the pages. I couldn't read. I could only think of my parents. Would my mother be okay? Did she indeed have cancer? If so, what would happen next? How was my father handling all of this? They had been together nearly 56 years. She was all he knew. I was as much worried about him as I was for her.

A kind and caring woman sitting next to me on the plane sensed that I was troubled. When I reluctantly explained to her that my mother might have cancer, she took my hand warmly in hers. She asked if she could pray with me and went on to recite some of the most beautiful and calming words. I wish I could remember her name because I'd like to thank her once again. I will always remember the kindness and compassion she bestowed on me: the stranger sitting beside her.

My sister Brenda was flying in to meet me from her home in Austin, Texas. We met at baggage claim where we hugged, silently. In the car on our way to Casa Grande my cell phone rang. It was Dad telling me that Mom was in the hospital. That very morning, while we were in route to see her, her left lung had collapsed, filling with fluid. The biopsy was taken earlier but the results were not in yet. My sister and I prayed for a positive outcome, for both of them.

Arriving about an hour later at the hospital we met Mom's doctor in the hallway as he came out of her room. I recognized him so I stopped him and introduced my sister. Our eyes looked up at him imploringly. He gently took our hands in his. "The biopsy is positive," he said. "Your mother has terminal lung cancer."

We knew this was a possibility but we didn't expect to hear these words so soon. "What does this mean?" my sister asked, through choked words. Suddenly, I felt like I was having an out-of-body experience. I could hear the conversation but it sounded vacant, as if it was from far, far away. "What stage is it, and how long do you think she has,?" I finally asked him. The doctor gazed at the two of us with that sympathizing look no one ever really wants to see. "It's Stage 4." he replied. "Optimistically, she has about four to six months. I'm sorry," he added.

Wednesday, November 3, 2010

Coping with the Diagnosis

After my sister and I composed ourselves we went into our mother's hospital room trying to look a bit cheery. I'm not sure if it worked or not but she was very happy to see us, despite the incomprehensible news she had just received.

"Do you know what I have?" she asked in a soft, broken voice. "Yes, Mom," we said, cradling her small, shrinking body carefully in our arms. "We saw your doctor out in the hallway." We treaded lightly with any additional information because we weren't sure exactly what her doctor had told her. Did she know her full prognosis? If so, how does one cope with knowing that your life is soon coming to an end? I couldn't even begin to comprehend it.

My sister and I gathered our thoughts, trying to be upbeat for Mom but it was difficult. Somehow, we managed to continue the visit without breaking down. It helped to have the two of us there together. We could support each other and jump in when the other was having a hard time. We spoke about the mundane things I imagine everyone speaks about when a situation like this arises: the weather; news of family; the 'nice' hospital room; the 'gorgeous' view outside her window. It was all so fake.

Later, we were still in Mom's room when the doctor on call came in to check her. She was in pain from the large draining tube sticking out of the left side of her bony chest. He ordered more pain medication. Mom asked him if he knew what she 'had,' and he simply replied, "yes." She went on to ask him his opinion of whether or not she should seek "treatment?" He calmly and quietly discussed what he would recommend if she were "his own" mother or wife, and that was "no."

The doctor believed in letting life take it's natural course (given Mom's prognosis). He went on to explain that she was too frail, and that the cancer was too far advanced for any treatment to help her. In addition, Mom suffered from chronic emphysema and COPD which complicated her lung cancer immensely. If she did seek treatment (it was still HER choice) she may not survive it. Even if she did she probably would be the worse for it.

By the time the doctor left the room a slight calmness and composure had come over Mom. She was very much touched by the spiritual side of the doctor and felt somewhat comfortable with his opinion. In her own way she was already beginning to come to terms with her diagnosis. Of course she wanted to get other opinions before any final decisions were made. We both agreed. We encouraged her to talk to Dad. The two of them needed to make the final decision together, although it would be my mother's final call. It went without saying that we would support any decision that was made. It was Mother's body. It was her life and her choice.

Tuesday, November 2, 2010

Surving the Past Several Months

Together with my father's input, my mom chose not to have any cancer treatment, just as all of her doctors recommended. There would be no further tests: no Pet scans; no MRI's; no CT scans; no chemo; no radiation. I don't know for sure but I suspect Mom's decision has given her perhaps a longer and better quality of life. It's well documented that cancer treatment is often far worse than the disease itself. Of course, if there had been hope for a cure or a longer extension of (good) life, her choice might have been different.

'Letting nature take its course' has been a small but treasured gift. My mom has never been sick from any cancer treatments. She has never lost a single strand of hair. Until late September, she never even took a single pain pill! She's been able to go places and do some of the things that she's wanted to do. She reads for enjoyment and eats fairly well, especially food from her favorite Mexican restaurant! She enjoys watching the colorful array of birds outside her window splashing in their bath during the mornings and sometimes in the afternoon. She likes mystery shows on television and listening to Frank Sinatra music. She talks and sometimes laughs with her grown children and seven grandchildren on the phone. She visits for a short time with family and friends. She reads her Bible diligently every day. She lives.

Mom's biggest obstacle is her breathing. The lung cancer has severely compromised it. Every breath my mother takes is a struggle that consistently gets worse with each passing day. She is on oxygen 24/7 with breathing treatments at regular intervals. The time between them gets shorter each week, sometimes each day. Although my mother's health has steadily deteriorated she still fights. She still wants to live.

In the beginning I was told that Mom had only four to six months left to live: devastating news for the entire family. Although doctors are not God it is now near the end of that time frame. I know that Mom's life here on earth is closing in far too fast.

I often wonder if is better to know (approximately) when your life will end, or to live on without ever knowing? For my mother I think it's been both a blessing and a curse. On one hand Mom has been able to make amends, become closer to my father, enjoy some of the the little things in life, and plan for her demise. On the other hand, she's scared (appropriately so) and is not ready to go. Her nerves torment her and she lives each day with horrible anxiety. How I wish I could make things easier for her!

I remember and think often of our last Mother's Day together. We all gathered at my parent's house where Mom was ecstatic to be home from the hospital in spite of her diagnosis. Together with all of my siblings, I went through the motions of trying to make everything seem normal. The house was filled with love, good food, and even a little laughter. Still, there was nothing 'normal' about this Mother's Day.

Right after dinner Mom bent down, burying her face in her hands. "I don't want to leave all of you." she cried out. I could feel my eyes brimming with saltwater tears. My heart overflowed with tremendous pain. What could I possibly say to her?

"I can't imagine what you are going through, Mom," I quietly said, wrapping my arms around her. "I can't begin to imagine how it must feel to know that you are dying."

Since Mom's diagnosis, I've made many trips back to help out and visit with my parents. Today, I feel closer than ever to her than ever before. It's as our our previous slate in life has been wiped clean. I try to fly back about every three to four weeks to see my parents. I like to stay seven to ten days at a time. Since I work from home, I'm lucky that I can do that. Often, I take my work with me. It's all in my computer.

My sister Brenda tries to meet me at my parents whenever possible. Upon arrival, we have a great knack for knowing what needs to be done without ever saying a word to each other. Typically, we tackle different tasks. Among them: cleaning the house; doing laundry; grocery shopping; cooking meals; purchasing medical equipment; picking up prescriptions; calling for services (to help Mom & Dad after we must leave).

In between the above we visit our Mother in the hospital (she's been back twice) or help to take care of her if she is at home. It's an exhausting privilege. Dad is always so very happy to see us and extremely thankful whenever we are there. He enjoys our company tremendously and gets a rare but much needed break from being Mom's main caretaker. We do all we can to 'lighten his load.'

Together with our other three sisters and brothers, we automatically assume our own positions on the team: Brenda and I are the taskmasters; David takes time to visit, delivers take-out food and often pays for the check; Daniel visits whenever he can, picks up Mom's favorite lemon meringue pie from 'Marie Callenders,' and tries to see that we get needed rides to (and from) the airport; Kellie has visited from South Dakota and sometimes calls. But regardless of how well we think everything is figured out, the situation is never perfect. It takes a toll. There have been times at night when I've crawled into bed with my younger sister sobbing. She is there to comfort me as I am there to comfort her. We forever find ourselves taking turns.

I think the hardest part for me is living so far away from my parents. I can't help them in all the ways that I way want to. I have my own life with a husband and children (grown or not) who need me. My soul is torn. My siblings feel much the same way. We all have other lives that must be lived. Still, I am haunted. How does my dad manage when no one is there to help him?

Physically, I want to be there each and every day but I can't. As it is, whenever I return home I am emotionally exhausted. I genuinely feel ill for several days before I am back to my own 'normal' self. My husband, Gary is so very supportive. "Go for as long as you want or need," he often says, encouragingly. I thank him but I know this is very hard on him, too.

Recently, I reserved a ticket to go back again on the twelfth of November. I plan on staying for nearly three weeks this time. My oldest son, Jayson and his wife, Nichole will go with me, staying for just a day or two. In spite of her not wanting her grandchildren to see her, Jayson can't bare the thought of not seeing his Grandmother 'one last time.' Gary will join me on November 21st so that we can celebrate Thanksgiving together with my parents and two brothers. I hope and pray that my mom is still with us to enjoy this special time together.

I talk to my mother nearly every day on the phone. Lately, she only seems to have bad days or worse days; rarely a 'good' day. Her voice is weakening and she struggles to speak. Still, she is looking forward to my visit and retains her will to live. My sister is coming in too. Together we will put up our parents Christmas tree. Mom is looking forward to us helping her decorate it.

How very difficult this holiday season will be. I only hope we get to share it with each other.

Monday, November 1, 2010

Another Close Call

Last night, when I phoned my mom she was taking yet another breathing treatment. She needs them every three hours now. The breathing machine makes a loud rumbling sound so my dad was able to speak to me without my mother hearing him. His voice was soft and somber.

"Your mom had a real tough weekend," he began. "Saturday night I thought I was going to have to take her back to the hospital. She couldn't breathe." I could hear the despair in his voice.

He went on to tell me that after waking up in the middle of the night, Mom took four (or more) breathing treatments in a row: all futile. Dad wanted to call 911 but Mom didn't want to go back to the hospital. Finally, she was able to breathe a bit and her nerves started to settle down.

Tentatively, they discussed the option of calling in Hospice. We had interviewed them on a previous visit. Soon my mother was feeling a little better and sitting up in her favorite chair. She could breathe again! I couldn't help but think of how this natural process of life is so often taken for granted. Simply being able to breathe: do we ever even think about it? I do now.

Listening to my father, I could only begin to imagine the tremendous amount of fear they had recently endured. For Mother it was, and always will be, the fear of dying. For Dad, it is the fear of losing her and the helplessness in not being able to prevent it. Ultimately they did not have to call 911. Nor did they further discuss the option of Hospice. But, I can tell that my dad is nearly at a loss in knowing what more he can do. He is close to his breaking point. As Mom's main caregiver I fear he is beginning to become the patient. This is where my guilt lies. In longing to be there with them when I cannot.

With her breathing treatment over, Mom was able to take the phone from my father. "I'm so sorry I wasn't there to help you," I said, in anguish. "You'll be here next week," she replied, taking a carefully measured breath between each word. "I'm okay now, and soon we'll be putting up that Christmas tree."

"Yes, Mom, soon we'll be putting up that Christmas tree............"