My heart breaks for you as you so suddenly see yourself walking in the shoes of a caregiver. Sometimes, these shoes are high heels. You go to work as a professional. You work all day while wondering ‘how is my mother or my father doing today?’ Maybe the shoes you walk in as a caregiver are flats, or comfortable sneakers. It doesn’t matter what you wear on your feet, your ache is a recurring ache your feet and body do not understand.
You wonder — just HOW did this happen? Maybe you didn’t understand your parent was ill. I didn’t in 1997. Yes, my dad had lost weight. Foolishly, I took it that since he lived on a fixed income, perhaps he could not afford to eat as healthy as he should. At Thanksgiving, I asked him how he was feeling. Mr. Independent, an affectionate description I called him sometimes, was much too independent and proud to ask me for help, and so I took his response of “I’m fine,” as the truth. Three days later, he phoned me after work, telling me he thought he had cancer. He needed to go to the doctor.
We rushed to ER. After seven hours of diagnostic testing, the ER professionals suggested my dad needed to see a gastroenterologist. Two days later, I screamed when the doctors told me my dad had esophageal cancer.
“How can this be?” I asked. “How can my dad be sick?”
My dad lived in an affordable retirement community. He had many friends there. Sitting down to grasp the heartbreaking news, I recognized I was so wrapped up in my professional life, I did not recognize my dad needed me. He was 84-years-old. Living alone, he walked all over the sidewalks and streets of historical Charleston, SC. Never did he ask for money, or anything from me. He excused my busy life. He was proud of me since I worked in the educational field. He understood I didn’t have time for him. He understood that not only did I work ’40-hours weekly’ my weekends were devoted to recruiting students for the university almost every weekend.
I heard myself whispering as I wiped tears from my face. “Dear God, I’ve been such a fool. My dad needs me. He NEEDS ME.”
I took a leave of absence from work. An endoscopy was performed on Dad. He had a tumor on his esophagus. A tumor that was too difficult to remove.
I met with an oncologist. He suggested Dad needed chemo/radiation therapy and a feeding tube. He could not keep food down. He was choking and extremely weak. Dad weighed 130 pounds. Previously, he tipped the scales at 175. The oncologist wanted to know what I wanted them to do. He stressed Dad needed the feeding tube since he was malnourished. If he didn’t get some form of food intake, he would probably die within two weeks. I looked up, tears still gushing down my face and I said, “My dad is an independent man. He needs to make that decision.”
Dad fought to live from December, 1997 until his death on July 6, 1999. During that time, my focus was my dad. When it was suggested that he needed ‘skilled care,’ I inquired as to what the definition of skilled care was. Suddenly, I was learning a lot about serving as a caregiver. I was the “Parent to my Parent.” I made decisions about his care. I found ways to jump through the hoops to get him the care he needed and deserved. I learned a lot about diplomacy, refusing to take “no” as an answer. My dad and I became closer than ever. I visited him daily regardless of where he was. He moved from hospital to nursing home. Back and forth again and again as he weakened and I found ways to save his nursing home room and roommate. Never did I let Dad know the hoops I jumped through, just to get him the care he deserved. I met with nursing staff. I found an Ombudsman, a young and caring medical professional who shared her knowledge with me so I could get my dad the medical care he deserved.
I am hopeful things have improved since 1999. After Dad’s death, I wrote “Condition of Limbo,” describing in detail what it was like to serve as a caregiver in a community that appeared to be ever so negligent where caregiving was concerned, along with the medical care.
Now, I have several friends who are becoming the “parent to a parent,” and they ask me what they should do to make certain their mother or father is cared for properly. After listening to their story, I’ve decided it might be easier to share my experience on my blog:
I continue praying for your family, your mother/father and you, hoping each day will be a better day for all of you. Many times, it isn’t. What I share at that time is for you to fight and pray…to believe that tomorrow will be a better day. Yes, clichés. Clichés helping us to see the sunshine while the pain you are feeling is almost indescribable. It is true you should take care of yourself; nevertheless, right now, you probably are losing sleep. You are too afraid to give in to sleep, in the event ‘something happens to Mom or Dad.’
As I’ve stated previously, I walked in similar shoes when my dad became terminally ill with esophageal cancer. I blinked my eyes as I realized I was now the ‘parent to my parent.’ Suddenly I was making decisions my father was much too ill to make. You wonder – how do I do this? How do I make decisions HE/SHE should be making?
All I can suggest for you is to take each day “one day at a time.” When meeting with medical professionals for “skilled care” — a description they do not identify or describe. Skilled care means 24-hour nursing care…make certain you document the dates/times, names, titles, and most important, document what they say. Save these notes. They might become important at a later date — according to the Medicare and Insurance regulations.
How I wish I could be there with you. While I do not proclaim to be a professional regarding ‘caregiving’ walking in those shoes in 1999 was a wakeup call for me. Please get some rest. Ask if the hospital has an atrium, or a chapel. Step inside and let the tears flow. That is what I did one afternoon at Roper Hospital in Downtown Charleston. Their Atrium was newly built. I found a balcony, and there, I cried. I screamed and I shouted for God to listen to me. No one but God could hear me when the rushing traffic congestion drowned out my heartbreak.
I’m sending virtual hugs to you, and I am praying, repeatedly. God is there. This too shall pass. Praying for your mother or father to become strong enough to get to the rehab center, and I am praying for you to rest and get additional emotional strength.
You might ask yourself: “What do I do if my parent comes home. Is he or she able to care for themselves? Do I hire a nurse, or do I move in?”
In a perfect world, you might ask other family members to help. Unfortunately, I did not have that luxury. I was estranged from family members at the time. Fortunately, I swallowed every ounce of pride I had to find my family and to let them know our father was terminally ill. I am happy to report, I have one sister I stay in contact with now and we are closer than ever.
Walking through life when you become the parent to your parent makes one stronger. I would like to say it is a wakeup call to the importance of family remaining close; however, life does have a way of changing us and at times, the true character of a family member can be revealed. Sometimes good, but most of the time – bad. While my dad battled cancer and grew weaker, I actually had one sister write Dad a letter — stating something to the effect of: “I’m sorry you’re so sick, but I have to work so I can’t come to see you.” Her next statement in the letter was: “So tell me Dad…am I STILL in your Will?”
Thank God she lived eight hours away. I wanted to strangle her.
Watching my dad slowly melting away from life taught me to take each day one day at a time, and to slow down to appreciate the little things in life. I visited him in the nursing home daily, unless my bronchial asthma kicked in. On one occasion, Dad was reading his Holy Bible. When he saw me entering his room he screamed at me. “You get out of here,” he shouted. “I want to read my Bible.”
I felt rejected. How could he speak to me in such a manner? Didn’t he know I loved him and wanted to be with him?
After researching caregiving, I realized my dad was detaching from me. He did not want me to see his pain, or to watch his body slowly fading away. On the day of his death, I had a dream/vision in the early morning. I phoned the nursing home at 3:45am, inquiring how he was doing. They checked on him, reporting he was sleeping soundly. That afternoon, after a stressful day of working later than I planned, I entered the nursing home at 5:45pm. I ran into a nurse pushing an oxygen tank. She looked away from me, moving next to me.
“Ooh…that isn’t a good sign,” I said. She nodded. When she placed her hand on the doorway of my dad’s room, I screamed. I knew what was happening. The nurse pushed my hand away from the door. “You stay here,” she said.
Someone moved me to a couch. I sat down, tears pouring like an endless waterfall from my eyes and I sobbed uncontrollably. I knew the day of dad’s departure from me was here. I also knew I had to let him go.
After his death, my independence kicked in. I managed to plan the funeral. I moved like a zombie, without emotion or pain. I prayed for God to give me strength. Now 17 years after his death, I still miss him. There are days when I feel totally empty of emotions, and I have days where he is tucked safely inside my heart. I do not regret serving as his caregiver and I am proud we became closer and closer as he slowly melted away from me. Today, I am proud to say I was his daughter and I am pleased to share my experience with others who unexpectedly become:
THE PARENT TO A PARENT.
If you walk in similar shoes, I would love to read your experience and I am praying Medicare changed many of the regulations after 1999. If you are a caregiver, may God bless you as you care for a parent who taught you how to walk, how to talk and how to become a strong, independent and proud adult. Once my dad pushed me in a stroller. When he became so ill with cancer, I helped guide him with his walker, and later I pushed him in a wheelchair. But only once! He hated a wheelchair, refusing to sit in it again.
Yep. That was my dad. A proud, tall, striving to be independent 84-years-old man. Never did I see his elderly age. All I saw was — my father…My Dad! How I miss him!