major problems. Nonstop, frightening nose bleeds were just one of the visible side effects.
Recognizing the fear I was attempting to conceal, one of the doctors asked to speak to me. “The dilemma that we’re facing is significant. Your father is now bleeding internally as well as externally—a side effect of the medication we’re using. It’s the best choice that we have, given your father’s heart condition. But now, it’s difficult to say whether it’s helping or hurting him. If we discontinue the drug, he may experience blood clots. If one of those gets to his lung…” His voice trailed off as he seemed to be thinking about what next to say to me.
“If this were your father, what would you do?” I asked.
“That’s really difficult for me to say. We do need you to make a decision about discontinuing the medication. Things are not likely to get better,” he stated.
Evaluating the risk fell in my lap. Dad was understandably overwhelmed by his physical problems and fear. Mom was too weak and confused to comprehend as I tried to explain my conversation with the doctor. Dad was experiencing so many problems that I had little time to think. I had to immediately make a decision—one that felt like my own chest was being crushed. Discontinuing the drugs was my choice. Managing his pain and keeping my dad comfortable became the plan.
There was no new procedure or medication that would fix his heart, or mine.
Mom experienced disorientation and a great deal of anxiety in the hospital. She was fearful that something had happened to my dad and I had not told her. Mom always appeared to be so fragile that I didn’t know how much information to give her. During their 65 year marriage, my dad had always been their decision maker and Mom’s protector. As she and I continued along our path, I discovered that not knowing the truth was much worse for her than dealing with difficult situations head on. With time and patience I began to more fully recognize and understand aspects of my mother’s personality that I had never seen which eventually led us into a much deeper, more loving relationship.
Riding the hospital elevator and making difficult decisions filled another day as I checked on my parents and tried to find doctors. Wherever I was, I should have been somewhere else. I needed some magic, a clone or even a sibling to share the load.
The human heart feels things that eyes cannot see, and knows what the mind cannot understand.
− Robert Valett
…
Reflection
Making Decisions
Some people seem to make decisions with ease and confidence. It may even appear that they don’t have to invest much thought in the process before deciding. Others agonize over the tiniest detail and procrastinate as they torture themselves with possible outcomes.
Do you see yourself as one of these decision makers or are you somewhere in the middle? During my own caregiving journey, I tended to be the agonizer—trying to figure out all the ramifications of a decision before actually making it. As time passed and decisions stacked up, I grew to be more comfortable with the process and outcomes.
When you assume the role of caregiver, you will encounter numerous decisions you must make. Some decisions carry little consequence while others may be life altering. How will you ever make the right decision? If you have the luxury of time, gather information and make the best choice that you can with the information that you have. If time is short you may have to make a decision and hope for the best.
Decision making is rarely easy, but it comes with the caregiving territory. Humans are not omniscient, so none of us can know all the possible outcomes resulting from our decisions. Someone once told me, "A decision made at a given time is the right one for that moment." Read those words again and if you have difficulty remembering them, write them on sticky notes and plaster them around yourself.
Go ahead and make the decision. Rest in knowing that it’s the right one for now.
…
Chapter 9
The File Cabinet
I left the hospital briefly, because I realized that I needed to locate the paperwork my parents created the previous summer. Entering my parents' home, I was greeted by their two lonely cats who nearly tripped me as they wound through my legs. I walked into my dad's office and for the first time in my life, approached his off-limits file cabinet. It was Dad's private space where no one, not even Mom, would venture. Thumbing through files, I thought about the way my dad overpowered me with his decision that I, alone, was to have legal responsibility for them, regardless of my hesitance. When Dad made a decision of such importance, his unspoken rule of compliance became effective and I was clearly not allowed to refuse. As a sigh of surrender left my body, I kept looking.
Continuing my hunt for the papers, I wondered why the file cabinet was off limits. Dad never verbally said so. It just was. Many months later, when I had time, I discovered that Dad’s file cabinet housed valuable parts of his life, along with reams of unnecessary papers kept for reasons known only to him. I found countless written prayers and copies of sermons from church services, receipts for every car he purchased and carbon copies of dozens of letters he had written, randomly mixed among files containing legal and vital papers.
Gratitude overwhelmed me when I discovered several carefully constructed folders containing documents with Mom and Dad’s wishes along with the power of attorney that proved I had authority to be their advocate and make decisions on their behalf. Tucked in beside the paperwork I was relieved to find the checkbook to which we had added my imprinted name and signature. I stuck the checkbook in the folder of paperwork and wondered what else I might need.
I glanced in the bedroom and noticed Dad's wallet on the dresser. Something beckoned me to open it and there I found Mom and Dad's insurance and Medicare cards. Beside his dollar bills I noticed the car wash coupons that I had given him for his ninetieth birthday, just days before he entered the hospital. Sifting through random notes in Dad’s wallet, I wondered if we had celebrated his last birthday.
Tears suddenly welled up. But this was not the time to cry or sit with my head in my hands, even though the little girl inside me begged to do so. She had to wait as details at the hospital demanded my attention.
…
Reflection
Papers
Papers are a necessity, but they can take over your life. Papers can be neatly filed or just stacked up until they spill into chaos. Depending on the writer, papers may carry condemnation or permission.
Certain papers are essential for a caregiver. Financial and health care powers of attorney fall into this category. Without them, your ability to advocate on behalf of someone is quite limited. Also, be sure that you know where those papers are located, who created them and how much power they give you. You might consider seeking a second opinion regarding the strength of the paperwork. You can never have too much information regarding protection of your family member or yourself. The original papers need to be kept in a safe place and copies carried with you in your snazzy organizer.
If your family member has a trust or will (or both), you need to know the location of the original documents and have copies in your organizer. Dealing with government agencies, insurance companies and financial advisers often requires that you have copies of certain pages.
In addition to keeping track of legal papers, lots of other paperwork will arrive in the mail. If you can stay organized, you may feel less pressure as time goes by. And if you can't deal with the onslaught of papers, put them somewhere so you can eventually deal with them.
Sometimes, the paperwork has to wait.
I have so much paperwork, I’m