Monthly Archives: April 2014

It Can All Change in an Instant

When he woke up that morning, he had no idea that a stroke awaited him in the afternoon. His wife said he was “fine in the morning.”
Another man was shopping with his wife in a local retail store when he began slurring his words and speaking nonsensical phrases. Someone in the store immediately dialed 911.
Grandma was cleaning her house as she usually did – in her dungarees that she wouldn’t want anyone to see her wearing – when she collapsed and became paralyzed both physically and vocally. She was found when she didn’t respond to my Aunt’s daily check-in phone call.
We were having a simple conversation in the emergency room, awaiting an open operating room. Uncle Warren, in mid-sentence, was immediately silenced as his face fell against the right-side bedrail, his mouth drooped to the same side, and he could not find his words or voice; and I saw the panic in his eyes.

These were four very different, very vibrant people who were all ambushed by a cerebrovascular accident. The medical acronym is CVA. Most of us call them strokes. You can find data on strokes in the United States at the Centers for Disease Control and Prevention here.

The data are alarming, but it’s not data that I write about today. Instead, I’m writing about the effects these strokes had on these once very vital individuals and the people who loved them. Each of these people suffered physical dysfunction following their strokes. Some were paralyzed on their left side; others on the right. All four of them went through extensive rehabilitative therapy to re-learn how to speak, write, or walk. All four of them lived after having the initial stroke; but they each lived in very different ways.

The first man could no longer speak except to respond “yes” or “no” to simple questions. He could not move his arms and legs on his own; he could no longer enjoy reading his newspaper or sipping his morning coffee. He could no longer speak to his family. He was totally dependent on nursing home staff for all of his care until his death several months after the initial stroke.

The second man fared a bit better after his rehab therapy. He regained the ability to speak in simple sentences; he could still enjoy a meal with his wife and take in community events at the local college. But he could no longer teach and that broke his heart. He died about a year after his initial slurring of words in the department store.

Grandma needed to learn how to write with her left hand after 80+ years as a “rightie” since she could no longer talk. Grandma had two more strokes over the next year, which eventually led to her death and with each stroke, she lost more abilities: She could no longer speak words but she was somehow able to sing along with “Jesus Loves Me”. She could no longer write but could spell out words with those colorful plastic letters that most homes with children have on their refrigerators. She was dependent on others for all of her care.

Because we were already in the emergency room, Uncle Warren received immediate benefits of a tPA injection (tissue plasminogen activator defined here). He was eventually able to regain some use of his debilitated left arm with intensive rehab therapy. But because he could no longer walk on his own (due to severe vascular/circulatory damage in his legs), he needed to move into a nursing facility after he plateaued in physical therapy. He was not happy about his change in housing; but he had no other options.

All four of these lives were changed in an instant. The loss of communication forced family members to make decisions that may not have already been discussed. I don’t know if the first two men’s families had had previous conversations to know what kind of care and treatment they wanted in the case of a debilitating stroke. I don’t think my Grandma had any written documents about her wishes but my Aunt took her into her home and cared for her until her death, with the help of my Dad and all their siblings taking turns and pitching in. My Uncle had documents and we had some peripheral conversations. But it wasn’t until he explicitly told a vascular surgeon, who suggested double above-the-knee amputation, “I want to meet my Maker whole” that I knew his full and complete wishes. Hearing him say those words so emphatically gave me the courage to advocate for him when other medical professionals wanted to continue procedures and treatments that would be of no benefit to him.

Because we can each be felled by a medical crisis and have our lives changed in an instant, it is vital to have conversations with our loved ones and our doctors about our wishes. It’s never too early to begin these conversations, even though starting them can be scary and difficult. But it can be too late. “Too late” can arrive in an instant.

Caring Choices wants to help families have these conversations before it’s too late. Call us today (570-428-2021) to schedule your family’s initial conversation or a presentation to your community group.

Pendulum of Opinion

Throughout the course of time, I have become aware of the swinging of my opinion pendulum in regard to my health – past, present and future. To be more specific is, without question, a difficult task; summarizing a lifetime into a few paragraphs. To hope for some understanding of who I am versus who I was and how I feel versus how I have felt. The old adages apply to varying degrees for many of us. Youth, for me, carried a certain sense of “indestructability” combined with a feeling that there was “plenty of time.” Experience has shown me that there are often harsh consequences to many choices made from that perspective. And as the pendulum will swing, there are opposite extremes that “you can never be too safe” and “live like there is no tomorrow.”

Perhaps I have been lucky in my life beyond measurement. After 20 years as a blue collar employee in construction and industrial work, and another 21 years in the healthcare field, I have had a rhythmic swaying of change in my thoughts on the degree of “care” in health care and the genuine concern for health over profit. I have heard some say that “nothing in life is free.” I have seen the outcomes of over-confidence in industry with changing economy as multiple steel mills closed their doors around me. Fifteen years’ experience as an overhead crane operator in three different plants under two different unions taught me that no amount of faith can prepare someone for the sudden loss of employment. Equally critical is the same impact now with the ongoing downsizing and re-distribution of staffing in the medical field in the face of enhanced opportunity for access to coverage.

The solutions to the dramatic and often sudden changes in our lives to some degree can be as simple as planning with a variety of options available in a multitude of ways. Preparation is the key to survival. I accept that some people will continue to make poor decisions (as is their right) and that others have the responsibility to continually provide stability. As with my swaying opinion of the “care” available in health care, I have vacillated between feeling that all generated income was profit driven greed to the belief that there are sincere efforts to meet the needs of people. Every day I observe acts of genuine sacrifice to provide care to those in need of it.

No matter what degree of doubt or faith I have pondered in the intentions of the health care field, the final outcome of what will happen to me when change finally occurs will still greatly impact those responsible for the stability I may no longer be able to maintain on my own.

Caring Choices trusts that the solutions to the never-ending questions of how life will end depend strongly on the preparation and ongoing dialog involved. Discussions not only benefit the dying, but also loved ones who remain. Conversations can soften the impact of painful decisions and lessen the burden of those we love who will bear the responsibility of these final decisions.

Dying is Hard Work

These words, said by a daughter holding her dying mother’s hand, have been floating around in my head and my heart since she spoke them. In hospice, we use the phrase “actively dying” to describe a patient who is likely to die within 24-48 hours. To those inexperienced with the dying process, it may seem like an oxymoron. How can someone be active, AND dying? As this daughter watched her mother fade between this world and the next, appearing to speak yet unable to make a controlled sound, and gurgling through secretions that sounded worse to hear than they possibly were for her mother to bear, she looked at me and said, “Dying is hard work.” I could only agree, as we watched this gentle lady’s dying body react with twitching limbs, rattling lungs, and shallow breathing.

As we visited and talked about her mother’s life (full of hard work and a “fight-to-survive” mentality), she made a confession. She had come to that point in her vigil where she was no longer praying for God to heal her mother; rather, she was praying for her mother to die and be at peace. She was struggling with telling me that she wanted her mom to die. She recognized that she was ready to let go; that our work together prepared her to reach this point. Yet, she was also concerned with how her wish might seem to people unfamiliar with her situation. I realize as I type these words, some people reading them may be aghast that a daughter would be wishing death upon her own mother.

But there does come a point when adult children are ready to let go of their dying parents. After watching a loved one suffer through years of chronic illness, or uncontrolled pain, or agonizing debility, we are able to look beyond our own grief and pray for their peace. We pray that their suffering will stop and that they will find release in whatever awaits them on the other side.

For those who have had the privilege (yes, privilege) of being with someone they love as they are dying, it can be comforting to watch and listen as they “talk” to loved ones on the other side. It can be consoling to know that there are others waiting to greet our loved one after death claims her. This daughter and I have the shared experience of being with our actively dying mothers. We have both witnessed that dying really is hard work. Each death is unique and tends to take on a nature all of its own. We can only hope to follow one of the paths of least suffering. Their work is rewarded when we are able to say good-bye and let them go.

Caring Choices knows that dying is hard work and talking about death is difficult. We believe that having conversations long before you face an “actively dying” situation will help your family know when you’re okay with them letting you go.