Monthly Archives: January 2014

Life at All Costs?

The Marlise Munoz case reinforces my belief that everyone has the right to determine what kinds of health care treatment they want and do not want when faced with medical crises. And, most importantly, that everyone consider writing down their wishes with as many details and scenarios as possible … and then share those wishes with everyone, from family members to friends to spiritual advisers to lawyers to doctors and other healthcare providers. Obviously, no one can contemplate everything that could possibly happen to render oneself unable to communicate or make decisions to accept or refuse medical intervention. But to contemplate nothing may bring about situations where no one has control over decisions.

When stories like Mrs. Munoz’s are traipsed across the nation via our sensationalizing media for every Tom, Dick and Harriet to offer an opinion, I wonder if those offering an opinion also take the time to examine how they would want to be cared for. Maybe their opinions indicate the kind of care they would want. It may be too late to make decisions if we wait until we are faced with the situation first-hand.

So, rather than get caught up in the very opinionated debate swirling around these kinds of cases, I would hope that each individual starts thinking about their decisions if faced with a “brain dead” situation. These are some questions I have thought about for myself:

Would I want to be connected to machines that would breathe for me and pump blood through my body even though I don’t consider that “living”? What if the life-support was determined to be needed only short-term (like after a car accident) with full recovery expected?
Does everyone in my circle understand my thoughts about brain death and how I would want decisions made if I am declared brain dead?
If I was connected to life support, would I want my family forced to make the decision to disconnect or would I rather give them specific, written instructions to carry out my decisions?
In my decision-making process, can I anticipate or understand the emotional turmoil of my family keeping vigil over me in a mechanized state?
How much decision-making heartache will be avoided if I write things down and talk about it with my loved ones and my doctors?
Would my deliberations include consideration of the possibility that a long-term existence on life support might financially bankrupt my family?
Would I expect my family to be embroiled in a legal/court battle to remove life support that was initiated against my wishes?

People often make vague statements like “I don’t want to be a ‘vegetable’” or “Pull the plug” or “Do everything” without any explanation of specific situations or steps for loved ones to take on their behalf. Statements like that are really of no use to people standing around the bed of a dying (brain dead?) loved one. Only with frequent conversations and written decisions will family members be able to advocate for your care if you are unable to do so for yourself. Imagine the anguish and expense that might have been avoided for the Munoz family if only their conversations would have been shared with others and written down. Hopefully the fact that Mr. and Mrs. Munoz, who are in their early 30s, will emphasize that advance care planning is important for everyone, not just for the elderly (which seems to be a common thought).

Caring Choices is ready to meet with all of the generations of your family to help you navigate these conversations and put health care decisions in writing.

Greatest Love Worst Fear

My life has been all but boring. I was born in the mid-fifties, just to give perspective on history of the times. Early on, it was obvious to me that pain was unavoidable: physically, mentally, emotionally, or spiritually. Some pain was caused by poor choices I made myself or were made for me, or just the natural process of time and reality. Luck, as some say, or lack thereof, seemed to be a determining factor.

From this early observation, awareness, and experience of and with pain, I developed my greatest love and worst fear. Love of courage. I learned from the Bible and going to Catholic school that Jesus Christ calmly and willingly stood facing torture and death. I enjoyed reading books or hearing stories of tremendous bravery in war. I learned from films about war, newsreels and live television news in the 60’s from Vietnam. Equally intense and even more real were the acts of friends and people around me in everyday life.

Bravery was seen in street fights, police actions, civil rights or war protests, work situations, during vehicle accidents, flooding, fires and other community disasters and even normal day- to-day existence. Bravery had many faces.

Along with this also developed a fear of cowardice with a sense of dread that I could not be brave. And in fact, I often hid, ran, or otherwise avoided situations to escape even the perceived possibility of pain. This did not, to my surprise, happen every time. Eventually it became clear to me that there were only certain types of pain and situations that caused this fear. Even more importantly there were different times when my physical state and mood had a direct impact on what frightened me and what did not. I would come to find myself facing very difficult challenges in life with confident determination despite what the potential outcome would be. Almost as if being afraid of cowardice made me brave.

Later in life these two opposite poles changed form. Love of courage turned into love of acceptance. Fear of cowardice turned to fear of apathy.There is a strength that has come with the acceptance that life is sometimes harsh and unfair. People are not all loving, kind, patient, or warm. As I started my blog for today I could not help but laugh at the slight impatience I felt with the few seconds of inconvenience waiting for the computer to “unfreeze” so I could type. I thought to myself “my, how times have changed.” I wonder sometimes if the pace of things is racing life past us without being fully lived. Communication today at work, at home and almost everywhere is full of catch phrases, buzzwords, and immediacy. We are no longer “ready” but “proactive”; “from now on” has become “going forward”. And, we don’t talk, dance, or write anymore, we Text, Twerk, and Tweet. “With that being said”… LOL, OMG, WTF. The hope is that we can maintain our self-respect and the compassion for those around us. Hope that we can face life with courage to the very end. Within each of us there is fear and courage, weakness and strength, hope and despair.

Caring Choices offers a safe opportunity to explore the fears and strengths in times of loss with acceptance and understanding.

How do I …? When should I…? What should I …?

Each of us who has provided daily care for an aging, ailing parent or other relative has had to answer these and other questions, often times with little or no preparation. We learned as we went along. “Baptism by fire” some would say. If we were lucky, we had the ability to consult with accommodating healthcare professionals. We might also have had the good fortune to talk with other relatives/friends who had previously walked a similar path. More often than not, we were on our own to figure things out.

Like first-time parents, being a first-time family caregiver is usually accompanied by more questions than answers. There is a heightened insecurity about taking on the demands of caring for a loved one who is not yet ill or dependent enough to warrant placement in a care facility, but who is also not healthy/ independent enough to remain at home alone. How do you know when you need to step in and offer to “take control” of things? That’s a good question. And there are countless ways to respond.

Abraham Maslow was an American psychologist who was interested in basic human needs (physical, biological and mental) and the impact that fulfillment or neglect of them had on a person’s condition. Maslow’s Hierarchy of Needs provides a good structure for assessing when you may need to get involved in the care of your parents or other loved ones. The foundation level relates to physiological needs (food, water, sleep) and these become important for elderly loved ones, especially those who live alone.

Does your loved one have access to proper nutrition? Is she able to prepare her own meals? Is she losing weight because she’s not eating? What medications is she taking and is she taking them correctly? Can she afford her medication? Does she have automatic refills or expired prescriptions? Does she take herbal supplements that may interfere with her prescription medications?
Is he able to bathe/shower himself? Is his bathroom equipped with grab bars and no-skid shower/tub to avoid falls?
Does she drink enough fluids during the day? Is she getting restful sleep? Does she have difficulty sleeping?

The second level of needs focuses on shelter, safety and security:

Is her housing adequate and appropriate for her level of function? Is she able to move easily from one room to another (e.g., bedroom to bathroom) without assistance? Are there grab bars in the bathroom? Is the house in need of repair?
Does he have a personal alarm system in his house to call for emergency assistance if he cannot get to the phone? Is the lighting adequate for aging eyesight? Are there area/throw rugs on the floor that might cause a fall?
Are her bank and credit card accounts secured? Is she able to manage her financial affairs? Are bills unpaid or overdue? Does she know her passwords and account information? Are her insurance policies, investment accounts, and legal documents finalized and organized?

These first two levels of Maslow’s hierarchy are often called “basic needs”. Basic needs are usually the first areas in which aging parents begin to falter. More often than not, adult children see decline in these areas before their parents recognize it in themselves.

If you’re seeing a decline in any of these areas, it is a good time to approach your loved ones and offer your assistance. Power of Attorney documents should be prepared; one for financial matters, and one for healthcare decisions. Your offer to help will likely be met with some resistance. No one likes to give up control of their property or their person.

Always approach with love and from a place of concern for their safety and well-being. Gather everyone who will lend a hand of support in some way. If there is disagreement among siblings, put that aside if you can. Call a family meeting to talk about concerns and next steps. Preparing for the changes brought about by aging and faltering health will take commitment and sacrifice, from your parents … and from you.

Caring Choices can help families have conversations about basic needs and preparing for the best quality of life as home and health needs change.

Truth or Consequences

“Why would telling him the truth be helpful when it would take away his hope and cause all that stress?”

* * *

“Why didn’t anyone tell me I was dying?”

* * *

The questions above represent two completely honest, yet opposite reactions to the end stages of disease. In these examples, cancer was the driving force. Experience has proven to me that no matter what the diagnosis, eventually the reality of “final moments” creates opportunity for discussion. In some instances, the loss occurs before the chance to consider options.

What would you do, say or think if suddenly presented with these questions? Given time to reflect on the answer, compare facts, weigh options and consider opinions, the response may vary as dramatically as each individual’s character. Even when there are days, weeks, and months to debate and discuss, the direction and point of our own personality governs outcomes.

To simply say “It’s in God’s hands now” or defer to the most dominate authority present still does not address the emotional recoil felt down the line as the clock tick-tick-ticks toward the inevitable. Perhaps no amount of preparation, planning, and conversation could ever sooth the pain of tragedy. Life is not fair. Death is not particular.

My question is this. In today’s modern time with mindfulness and holistic loving kindness, what can our hands be doing in the meantime? Hope is life; often situations are so horrific that hope can seem lost. I say this: Hope, from my perspective, simply changes form and focus. Hope of comfort, hope to walk in a marriage procession, see a graduation, visit a landmark, enjoy a hobby, have a hug, smile, and even hope for a quick passing all continue to flow in harmony with love.

Caring Choices offers a safe place to share feelings, gather information, listen to experiences of others and build trust in your own choices knowing that they come from a place of love and hope.