The loss: Going home, part 1
To this point I’ve written a series of blogs on a caregivers journey through cancer with his loving wife, Annie. I’ve barely skimmed the surface, but I’m seeing a void out there that needs to be filled now. It’s estimated that there are over sixty-five million caregivers in this country. And many of the caregivers will be dealing with end of life care. Through Annie’s journey I’d like to help them. In this three part blog you, the reader, will learn things that I personally couldn’t understand or know until I traveled the journey with Annie. My goal is to help as many folks as I can understand the truest form of end of life care. This is a beautiful blog and will pay homage to my wife Annie. She was a great humanitarian and her life was all about helping others, so there’s no doubt in my mind she would want this story to be told. She’ll be the teacher, you the student. Annie will shed some light on the term, end of life care. Gene Pitney wrote a song years ago with the lyrics, “Only Love Can Break A Heart.” That’s simply one of the tragedies of being a caregiver for a loved one during end of life care.
November 1, 2010
It was around 7:00 A.M. and I was lying on the sofa when I heard her sweet little voice say, “Bobby I don’t feel well.”
I jumped up and came out to the dining room table where she was sitting in her wheelchair. I guess, for whatever reason, this was how it was supposed to be. It was so unusual for her to get up and I didn’t know it. She said she got up around 6:00 A.M., had a cup of coffee, then wheeled herself to the kitchen sink where she washed her hair and brushed her teeth.
I said to her in a soft voice, “What’s going on Annie?”
She looked so sad as if she knew what I was going to say. She started pulling her nightdress up, wanting to show me her Ostomy pouch.
I was just staring at her rolled up tissue on the dining room table; and as I unrolled it, I discovered that it was full of bloody mucus. On previous occasions, if there was blood, it would usually be light pink. I knew from the tissue that her lungs were filling with blood, and if I didn’t act soon she’d go into full respiratory failure or have a brain hemorrhage. I needed to start preparing her for comfort care; but with my emotions now overwhelming me, I was in a dilemma. How do you tell a loved one, it’s time to die? I tried to stay as calm as I could for the moment. Dr Moore Sr., previously told me when the process started my timing would be critical. Worse case would be a bleed out, which would be a very traumatic event, and Annie would be fully aware the whole time. As I said before, all I’d be able to do was hold her tight and love her through it.
I will never forget these words or this conversation.
She looked at me and said, “What am I going to do?” Her eyes were directing mine to her Ostomy pouch.
All I saw was blood in the pouch.
I simply said, “At this point Annie, there’s nothing we can do.”
She asked me if she could go to the hospital. I told her we couldn’t, and reminded her of the promise I made her. If we go to the hospital, there’s nothing they can do, and they won’t let you come home.
She replied, “So this is it!”
“I believe it is Annie.”
She laid her little head back onto the wheelchair and closed her eyes.
I asked her if she would like a Xanax, and she answered, “Yes, please.”
So I gave her a Xanax tablet.
At this point, I could never describe how I was feeling. Everything was so conflicted. Annie loved life so much, and I wanted it for her. But I knew we were in a race with the clock. Once again, I felt that the train had left the station; and this time it was flying out of control down the tracks. There was no way to stop it now. We’d used up, what I was now believing to be all of Annie’s miracles, and she would soon be going home.
I suppose to keep hope alive, and to confirm my intuition, I asked her if she’d like to go see Dr. Klein.
Her answer was a simple nod, “Yes.”
There were times in her illness when she’d hear bedside talk, and start thinking the worse. I promised her at some point in the illness, after I had command of, and understood her cancer, when it was time I’d be the first one to let her know. On several occasions when she was having difficulties, and getting anxious, my simple reassuring words, “This isn’t it, Annie, we’re going to get through this one,” would calm and relax her. She trusted me, and knew I would always be honest with her when the time came. I was her soul mate; and it needed to come from me. I knew she only had a few days left a couple of weeks ago; but as she had such a good Halloween evening last night, this morning caught me off guard. It must have been the calm before the storm.
It was about 8:30 A.M., and Annie had fallen asleep. I called Melissa and told her it was time; but Mom would like to go see Dr. Klein. Melissa came straight home to her momma, we got her bundled up, and Melissa pushed her in the wheelchair to the car. I helped her in as I always did, and then we took the short five minute drive over to Family Medicine East.
Melissa must have told her colleagues that we were on our way, as when we got there, the room was ready for us.
Melissa wheeled her momma in, while I walked beside Annie.
Not long after we entered the room, a nurse came in and drew her blood. We really didn’t need to do that, but we did it for her. The platelets were under 3,000; she was in the process of bleeding to death. We had to move fast to prevent her from suffering a catastrophic event.
After looking at the blood test results, Dr. Klein came in, and kissed her on the forehead.
Dr. Klein in a very sincere voice, asked her what he could do to help her?
She simply said, “tell me this isn’t happening.”
He explained to her that we’d reached the end of what medical technology can do.
Annie asked him, “Is that the bottom line?” He nodded his head to indicated it was.
At that point, I lost control of my emotions. I left the room, walked straight to Melia’s office, who’s the clinical coordinator.
I told her I couldn’t give Annie the morphine for comfort care, explaining that I fought for thirty months to keep her alive, I wasn’t going to be the one.
In a rather stern voice she told me I had no choice!
My response was, “I didn’t care, I’m not going to do it.”
Dr. Klein apparently overheard our conversation, and came walking up.
He told me I had to give her the morphine.
I snapped back, “I couldn’t.”
Melissa came running up, gave me a stern look, and told me Mom was looking for me.
Melia awkwardly explained to Melissa what our discussion was about.
Melissa eyes seemed to be questioning the reality of the moment as she looked at Melia and said, “I’ll do the comfort care.”
In words that only a loving daughter can speak, Melissa quietly and calmly said, “My momma brought me into this world, and I can help her out.”
Those words made me shudder, as the realization that we were now officially on a slippery slope to death, was settling in.
Melissa and I walked back to the room to find Annie with her head lying back in her wheelchair, staring at the ceiling. We both gave her a loving hug, and were just getting ready to push her out of the room when the door came open. I guess the news traveled fast throughout the clinic as there was a long line outside the door of staff members waiting to see Annie. One at a time, they entered the room: all of them gave her a hug, some said they loved her, some gave her a kiss, and of course, some simply gave her a loving hug in silence. There were lots of tears; but none of them said good-bye as they didn’t have too. Annie knew what they were doing.
I know, even though she didn’t say it, and under very difficult circumstances, through her tears she felt honored.
On our way home, Annie was sitting in the front seat, wrapped up in her blanket. Melissa was in the back seat, sitting forward, with her arms wrapped around her momma. Annie just stared out the window, as if looking at nature and life in general, for the last time. It was a somber drive home.
I think Annie was tired of fighting cancer, and living in a very diseased body; and who wouldn’t be. Spiritually she was ready to move on to what she believed was a world of no pain or suffering. Her tears were easy to explain. Not only was she leaving the only life she’d ever known, she would be leaving all her loved ones behind; who she knew would experience a deep torment in a way they’d never known before. Grief!
By the time we got home, Victoria and Beverly were sitting at the dining room table. Melissa wheeled her momma to the table, and parked her wheelchair in its familiar place. I walked over to the coffee pot, feeling the uneasiness in the room, and poured Annie a cup of coffee. We must have sat there for an hour or so, as Annie sipped on her coffee, probably sensing this would be the last cup of her beloved coffee she ever had. The mood was so awkward; and none of us really knew what to say. I had called Beverly that morning and asked her to come over, as I knew Annie would need her.
I remember Melissa kneeling down beside her momma, rubbing her legs and holding her hands.
Her mom looked at her, and spoke these words, with so much grace, love, and elegance. “Remember Mel, you were always my “peace.”
A few minutes later, Annie gave us all a gift, when she looked at Melissa and peacefully said, “Let’s get started.”
Annie, in one of her final gestures of grace, had just let us all off the hook. The final decision had just been made, and Annie, in her wisdom, was getting ready to start her new journey to “Life after Death.”
She knew she was running out of time, as every time she coughed, it was bloody phlegm.
I wheeled her into the living room and helped her onto the hospital bed, with Melissa, Victoria, and Beverly following.
Once I got her sitting up comfortably, she looked at me and softly said, “How long will it take me to die, one or two days?”
My reply was a soft and sad, “I don’t know Annie.”
That question will haunt me for the rest of my life. It’s the kind of statement I will take to my grave. It’s difficult to understand how a person, being so aware of their situation, can keep their poise while staring certain death in the face. How do you do that? Annie was so graceful in dying and in death.
A few minutes later her nephew Andre, who was due in tomorrow afternoon, called her from England. Their conversation wasn’t very long, but it covered the most important aspect of life. They spoke of their love for each other, in a very personal and meaningful way. I remember her telling him she’d try to hold on until he got there.
The conversation was very painful to listen to, as Annie really loved him; and took on the role as his surrogate mom, when his mother Wendy passed a few years earlier from cancer.
Not long after she spoke with Andre, we laid her down. The visual of her laying there, and knowing that when she took her first syringe of morphine, there would be no turning back, was taxing every emotion in my body. I knew I was on the verge of an emotional breakdown, but somehow I had to stay focused on helping Annie through these troubled waters. I even tried to talk Melissa and Beverly into giving her morphine and Xanax in tablet form; but I knew I was just stalling for more time. Bless their hearts, they tried for me, but she couldn’t swallow. It was apparent that her throat was closing down, and her breathing was becoming labored. Yet another sign, that her body was starting to shut down. Annie was on her way out of all this pain and suffering; and I knew in my heart there was nothing I could do. I couldn’t save her.
I asked for some private time with Annie, and then laid my chest across hers, put my arms around her, and lost it. I cried like a baby, as I was so hurt. I know it sounds like it’s all about me, but that isn’t even close to the truth. Over the course of the illness, Annie and I became one. I hurt for her because she had to die, and for me, I was losing the love of my life. While I was crying, all I could feel was her right hand with the sports bandage on, rubbing me, up and down my back. Annie was dying and comforting me. I gave her everything I had for thirty months. In return, she gave me enough love to sustain me forever, and some of my most incredible memories.
As I raised up off of her chest, I looked her in the eyes, told her I loved her, and she said, “I love you too.” I rubbed my hand across her forehead, letting it gently slide down over her hair. After a soft and tender kiss, I turned and disappeared into the dining room.
I truly believe in some way, beyond the imagination of many, “I was kissed by an Angel.”
After I left the room, Melissa walked back into the room, told her momma she loved her, and immediately started comfort care. The time was 2:00 P.M.
Part 2, the journey begins
Part two is sad, but very educational for those looking for answers. We didn’t use hospice, as it was doomed to fail with her. Beyond that, death is so personal I felt it had to be handled delicately, and with the love and compassion only loved ones can render. And that will be clear for all to see.