Monthly Archives: December 2013

Hearts vs. Brains

As I write this post, there is debate swirling around 13-year-old Jahi McMath in a children’s hospital in California. She has been declared brain dead following complications from a “routine” tonsillectomy. The hospital’s position is that she should be removed from the ventilator that is currently breathing for her and allowed to exit this life peacefully. Her parents by all accounts are “expecting a miracle” even though all of the medical professionals and a judge have declared Jahi brain dead. Jahi’s mother has been quoted as saying if her daughter’s heart would stop, then they would consider her dead; since her heart is still beating, they consider her still alive. The gist as I understand it is that the parents have requested that the hospital perform two surgeries: a tracheostomy and a feeding tube placement so that Jahi’s body can be kept alive and moved to a nursing facility. The hospital is refusing to perform surgical procedures “on a corpse” and hold the position that brain dead means permanently lifeless with no recoverable options.

In this situation, we can clearly see struggles between hearts and brains. Not necessarily the physiological structures and functions of these two organs, but rather the characteristics assigned by human beings to their relevance in our lives. If one’s perspective is heart-based (emotions) like family members, one may assume that life remains or is paramount and, like Jahi’s parents, might hold out hope for a miracle. If perspective shifts to a brain’s reasoning and logic, one might agree with the hospital caring for Jahi and avoid doing further harm to a brain-dead little girl.

Regardless of which side one agrees with, there can be no overlooking the fact that emotions (heart) and reason/logic (brain) rarely operate in unison in times of medical crisis. Loved ones unprepared for a medical crisis will most often voice concerns or directives from the emotional arena while professional care providers are likely to be working from the reason/logic arena. Although families do not want to hear words like “medically futile”, they may nonetheless need to be said in the spirit of shared, informed decision-making. Healthcare providers have an obligation to provide care but that obligation ceases when the options for care are deemed to offer no medical benefit for the patient.

Several important lessons may come from Jahi’s case:

Surgical procedures, even if very commonly performed, should never be considered routine.
Patients and families should fully understand and prepare for possible complications regardless of the percentage of risk.
It is never too early to have conversations about scenarios like this with family members, including children.
We need to employ both hearts and brains in determining healthcare choices and treatment options, long before medical crises occur.

Caring Choices is ready to help you and your family prepare for decision-making during a medical crisis. The key is early conversations in times of health when emotions and reason are both fully engaged.

“Why Do Good People Have To Suffer?”

Hearing this question from an 8-year-old certainly had more impact than the hundreds of times I had also felt this way. Considering the likelihood that millions of people down through the ages have experienced this same dilemma, as humans adjusted to events in every country on every continent, I was no more prepared to deliver an answer.

Something was different in my son that day. His normal after-school routine – door flying open, “Hi dad!”, backpack slamming into the sofa, click of the TV knob (yes, at one time people actually touched their TV sets in order to watch them), and then plant himself rooted on the floor in the center of the living room – was absent.

On this day, there was no sound but the soft shuffle of sneakers into the kitchen behind me as I flipped the ham and turned the fried potatoes in the pan. My “What’s up?” remained unanswered as I tended one of our favorite meals, stirring the creamed corn. After an awkward pause, I said again, “Hey little buddy? What’s going on?” His downcast eyes and motionless slouch screamed for my attention. Turning off the burners, I slid the kitchen chair out from under the table with one foot and dropped into the seat in one fluid motion pulling myself up with growing concern. “OK, let’s have it. What’s wrong bud?” And there it was, shattering the silence like an explosion: “Why do good people have to suffer?” Many emotions – fear, sadness, pain, doubt, hopelessness, panic, anger, frustration, and rage – streaming simultaneously from deep dark brown innocent eyes.

Without a word, recognizing with great joy the proof of true compassion, I went to the only source of reasoning my mind could grasp in the moment. The poem I had written the previous April called “The Choice”. In it then, was my response; and now, today’s message to us all.

The Choice

what would life be worth at all
without a choice to rise or fall
in or out, day or night
love or hate, peace or fight

give or take, hot or cold
thin or fat, young or old
smart or dumb, slow or fast
wet or dry, first or last

would we know what’s right from wrong
would we all feel weak or strong
sad or happy, more or less
smooth or rough, cursed or blessed

straight or crooked, here or there
near or far, plain or rare
black or white, quiet or loud
sharp or dull, shamed or proud

tell me friends, what would it be?
If I were you and you were me?

the choice of life is live or die
are you really bold or shy?

can you see the reason now
or are you blind to truth somehow

believe me soon or it’s too late
learn to love and not to hate

take your love and give some more
be the richest of the poor.

J. M. Desiderati/April 1983

Caring Choices understands the duality of life and the complexity of facing death. The choice is ours in how we deal with the reality. Make your choices with compassion, empathy, honesty and hope. Not everyone has to suffer.

“Routine” is Subjective

I recently underwent a routine, preventative medical procedure. Now that I am on the other side of it (and there were no problems found), I can breathe easier, I can think more clearly, and my mind is not occluded with worry. That was not my perceived reality during the week leading up to this experience. I thought several times of cancelling the whole thing. I agonized often about the preparation and whether I could do it. More often than not, the notions of complications seeped into my thoughts.

One important lesson I learned during this experience is that “routine” is subjective. While very common, this would be a “first” for me and felt anything BUT routine. It is an invasive procedure and although the doctor shared that there is minimal risk, my own research (perhaps way too much of my own research) alluded to severe complications if those minimal risks occur. Even the well-intentioned support of friends who have gone through the same process was of little comfort when contemplating the things that could happen … to ME!

As I have reflected on my experience, I have come to realize that all of the energy I expended on worrying and anticipating robbed me of a week’s worth of enjoying life. My preoccupation with “what-ifs” kept me from fully enjoying time with my husband and friends, interrupted restful sleep, and disturbed my mood. Everything my concerned friends and family shared about their experiences turned out to be pretty accurate. The day before really was the hard part, and it wasn’t all that difficult or unpleasant. I slept through the exam and awoke without complications.

I believe it is natural and normal to worry about the unknown, to anticipate some first experiences with trepidation and fear, especially when the experience involves something invasive into or against our bodies. Part of my fear leading up to this day was worrying about what would happen to my family should a complication occur that would render me physically dependent, or unable to work and contribute to our household. I became fearful about what my son would experience if something happened to me. As I told my husband, all my thinking and worrying was taking me deeper into the rabbit hole and I could not keep myself from sinking into it.

Through my experience, I have come to understand a few things more clearly:

People are hesitant to talk about “what ifs” with medical procedures and diagnoses for fear the bad things may actually happen.
Thinking and talking about things that might happen in the future can be daunting and anxiety-provoking.
Without accurate information and open discussion, it becomes very easy to dive into the dark recesses of imagined (and feared) problems.
Even with kind reassurances and information, people experience fear, worry and anxiety when an experience is new.
Worry and trepidation cause a fretting state that chokes out the ability to spend quality time with those we love and/or enjoy favorite activities.

Talking about bad things does not make them occur. Open, engaging discussions might actually alleviate some of the worry that builds up when things are left unspoken. Although hearing from friends and relatives who had undergone what I was facing did not completely ease my angst, it did give me hope that I, too, would come out of it fine. But, if something bad did happen, I knew that I would be surrounded by love and support. Sometimes, just knowing that people have your back can weaken the fear of the unknown.

Caring Choices can help you and your family navigate the rabbit hole of fear, worry and trepidation by providing information and guiding support as you step through your personal care planning conversations.

Intestate Conundrum

Intestate = Not having a will

Hotch-pot = gathering together of the property of the deceased

Conundrum = riddle, puzzle

Time = out

Whenever my behavior becomes a familiar Déjà vu, dad is there. His voice, laugh, memories emotion of a loss so fresh it triggers a tear. Any life is an ocean of tears. Few are spared from the often sudden trauma of unexpected loss.

Knowing in advance would likely not be any less fearful and smooth. Death has always frightened me. Fear of living? Tonight my heart opens, weeping endlessly for the torment and strife throughout the world around me. More than ever before, an appreciation of the love, laughter, and joy that are there affects me just as passionately.

Share the gift of time with empathy, compassion, and strength. Teach when you can. Help when it’s due. Observe. Interpret. Think. Act. Rest. Live to the fullest potential in your power. Gallant bravery and skill are as necessary as a smile. Everyone can smile.

Throughout my life, death is there. Ever alert, my soul senses its presence. When my 9 yr. old son asked “Why do good people have to suffer.” I knew his heart was true. And I knew he already had the answer. To live is to suffer. And to share in love and peace takes only desire. Hope and the freedom of choice are often only available to us because someone else had paved the way, paid the price, and sacrificed.

Today my reality is one of simple pleasures and basic needs. With the treasures of trust and support from those I love there is a new strength inside of me. Helping my family and friends is the best gift I could ever have. So now, my Will is written. No one will need to agonize over the intestate conundrum of what to do with the hotch-pot after my death. My time is split between education, music, love, laughter and cats. Do I still fear death? Can I answer that a little later on? I’m too busy living at the moment.

Caring Choices begins with a smile, and offers support as you and your family discuss and possibly begin transitioning into another of life’s most intimate times.

Not So Golden

In his final couple of years, my uncle often said to me: “These golden years are not so golden”. While I think he was referring to the ailments that his early 80s wrought on him – two knee replacements, triple bypass surgery, post-surgical rehab stays, etc. – he could also have been referring to watching his wife of 54 years slip away ever so slowly in a nursing facility. He may also have been referring to the withering away of their hard-earned (and frugally saved) nest egg to pay for her care and residence.

My aunt required more constant care than my uncle could provide at home. No one anticipated that she would “live” for 7 years in her condition. But she did. After one-half of their joint assets (except their house) were “spent down”, we could enroll my aunt in Medicaid to cover the costs of her care. This happens more often than most people realize and I suspect few people think about this until they are faced with placing a loved one in a facility.

There are service agencies in communities willing to provide care in private homes. Most of them do not accept insurance (because they can’t, not because they don’t want to). This means that families need to figure out if they can pay privately for additional helping hands to keep their ailing loved one at home. Most often, the kinds of assistance families need help with include bathing, feeding, and positioning (moving from bed to commode, walking to the kitchen table for meals, etc.). Sometimes they also need help with things like running errands, grocery shopping, or routine housekeeping. Since most non-medical “helping hands” agencies charge between $15-30 per hour, the financial costs can quickly add up to an unsustainable amount for a family (or an elderly spouse).

Home care agencies certainly provide assistance covered by insurance to help with bathing and dressing, and sometimes feeding, but on a limited basis (a few hours a week). But, depending on the type of insurance involved, once the skilled nursing need is met, all services are discharged. Again, families (or an elderly spouse) must pay privately for additional care.

As more and more Baby Boomers join the ranks of “elderly,” there will be increasing demands on existing agencies and skilled facilities. There have been several articles in the media recently that predict a caregiver shortage (family and otherwise). In order for people to remain in their homes through illness and eventually end of life, financial planning for care will need to become a vital part of family conversations. Knowing what one can afford will help determine whether one can really remain at home with agency and private pay services or if placement in a facility will be required.

Working on these kinds of plans before the ravages of old age and/or illness strike may help retain some of the hue in the golden years. Although recent changes may provide health care for hundreds of thousands of formerly uninsured individuals, no increases in the already overstretched volume of available health care workers and private duty caregivers are on hand. This could result in making it even more likely that the burden of care will fall to family and friends of those in need. Planning and preparation for one’s future care is becoming more critical than ever before as the number of those in need grows larger than the number of professional and private agencies providing assistance.

Caring Choices offers to help families learn about private services and skilled care in their areas to help make informed planning decisions.