Author Archives: Cindy Moyer

Failure to Prepare

I never know where I might find inspiration for this blog. Today, it was reading an interview in the AARP Bulletin with basketball legend, Kareem Abdul-Jabbar. The journalist asked about the best advice Abdul-Jabbar had received from his college coach and his reply was that the coach would say: “Failure to prepare is preparing to fail.”

How often do we go through life on auto-pilot, never really planning or preparing for things, and expecting that we’ll manage any bumps in the road without much interruption or attention. We go through regular morning routines getting ready for work or school without really thinking about the breakfast we’re skipping, or the clothes we’re choosing, or the last-minute lunch items we’re snatching from the refrigerator. We live in a “grab and go” kind of society now where convenience and immediacy are paramount to taking time to consider options or preferences.

I don’t imagine life will slow down much for many of us. Instead, we could slow down a little. Consider the options. Be able to recognize opportunities, then plan and prepare for things that will save us time and anguish in the future. Even the simplest preparations can help.

For instance, I’ve found that if I take just a few minutes before going to bed to choose my work outfit for the next day, getting dressed the next morning goes more smoothly and takes less time. I don’t waste precious morning minutes ironing a pair of slacks because I prepared and did it the night before. I don’t have to take time figuring out which scarf or necklace goes best with the sweater because I chose accessories before going to bed.

When I make breakfast for Jim and me on a slower-paced weekend morning, I take the time to make extra servings so that we have leftovers for at least two more healthy breakfasts during the week. This preparation saves us from grabbing carb-heavy bagels or skipping breakfast altogether on those more hectic workday mornings.

These two simple preparations give Jim and me the opportunity to enjoy spending some morning time together over a healthy breakfast before jumping into our separate workdays. We get a healthier start to our day because we’re able to take a few extra minutes to be together, share a laugh, and ease into our fast-paced jobs.

This same preparation technique can be applied to the tougher topics in life, including make preparations and plans for our older age, declining health, and end of life. No one has to make all the preparations at once if we starting talking when we’re relatively healthy.

Not making plans, though, may force people we love into a “grab and go” mindset – grabbing the first treatment/procedure offered and making decisions without the benefit of your thoughts and conversations.

Caring Choices believes in the art of preparation and planning. When we fail to prepare, our loved ones will be living with the failure. Let’s not burden people we care about with feelings of guilt over “wrong” decisions. Conversations are the best way to share your plans with family and friends. You might begin over a slow-paced weekend breakfast!

Handling the Elephant in the Room

You’ve probably heard the idiom “elephant in the room” at least once in your lifetime. People use that phrase to describe something that is (1) an obvious problem which remains unaddressed or (2) a topic that no one wants to discuss. We believe that the specter of DEATH is certainly at the top of those lists even though we will all face death many times in our lifetimes. Jim and I have experienced the deaths of our grandparents, parents, friends, aunts, uncles, cousins, a sister, a niece, and hundreds of hospice patients and/or nursing home residents. We have drawn on our combined experiences with our family members and people we’ve aided through hospice to create something we believe wholeheartedly can be very helpful to everyone who will experience changes in health and independence (which is every one of us!).

We call it Elephant in the Rööm™ and we’re offering it now on our new website at http://elephant-inthe-room.org. We are certain our Elephant in the Rööm™ will aid individuals, families and groups in thinking about and discussing healthcare needs in a variety of physical and emotional states. The purpose of Elephant in the Rööm™ is to help people begin meaningful conversations about the kinds of care they want (or are willing/able to provide) when health conditions change. We know talking about future health problems and eventual death can be scary. With Elephant in the Rööm™, we believe you CAN talk about it without fear or trepidation.

Handle the elephant in your room with our Elephant in the Rööm™ and make plans with your loved ones while you can talk about these things. It can never be too early to talk about health and aging issues, but it can become too late.
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Lighten

It’s soon that time of year when people make their annual proclamations to change things in their lives. New Year’s Resolutions! So full of importance, action, and promise! And yet so often discarded in the first quarter of the year for any number of reasons. Perhaps the goals are too lofty. The ideals too large for one person to manage. Or maybe life intervenes to hijack the resolution with a dose of reality. Whatever the reason, many resolutions remain unrealized. I’ve done this for decades and in the last few years, I changed the way I make resolutions. In fact, I don’t make resolutions. I choose a single word to provide influence, inspiration and motivation throughout the coming year.

For 2015, my word shall be: LIGHTEN. And here are a few reasons why:

Jim and I each have the problem of stress-eating which has given us some unwanted poundage and inches that we’d like to lose. We can feel changes in our bones and bodies that are not going to be beneficial as the years go by. We are not nearly as active as we should be. There is a need for lighten-ing here.
We have accumulated “stuff” (George Carlin’s routine is such an accurate reflection!) in our home that is either no longer useful to or practical for us. We have our own library of books and DVDs that could serve a small community. We have clothing that no longer fits (even though “someday we’ll get back into them”). We have housewares and furniture that we no longer use but that still have life in them. There is a want for lighten-ing here.
Both Jim and I work in demanding jobs in caring for chronically (or terminally) ill and mostly, but not always, elderly. We see the vestiges of once vibrant lives succumbing to the ravages of illness and age. And we see grieving, up-close and personal. We see people who are facing loss, family and friends who are focused on the lost relationships, the surge of wide-ranging emotions, and sometimes the pressure of unwanted decision-making. There is desire for lighten-ing here.

There are other examples I could give to substantiate my word choice for 2015. I’m sure many people can relate to the three illustrations I provided above. I also found some great definitions for “lighten” online this morning which influenced my word choice:

“make or become lighter in weight, pressure, or severity”
“make or become more cheerful or less serious”
“to make light or clear”
“to relieve of a burden in whole or in part”
“to make less wearisome”

It is within these definitions that Caring Choices will share in my 2015 word choice. The thought (and act) of having advance care planning conversations with people we love is weighty, serious, burdensome and wearisome. Jim and I both hope that one of your resolutions this New Year will be to consider lighten-ing your family’s load and start talking. It can be one of the most important and life-changing resolutions you make.

Caring Choices is here to help. Conversations do not need to be weighty and burdensome. Let us help you lighten the load for the people you love.

Overwhelming Choices

I’m not a shopper. In fact, I always joke with my friends and say I’d almost rather have a sharp stick inserted in my eye than to spend a day shopping. However, yesterday, I had errands to run and things to buy so I set foot into both a major department store and the grocery store in the same day. I had very specific lists for both places and I didn’t veer from those lists. I went into the aisles where the goods we needed could be found. But, as I walked through both stores, I couldn’t help but become a bit overwhelmed by the amount of choices we have available to us. (I usually feel this way in stores but since I knew I would be blogging today, it seemed to strike me more vividly than usual.)

My husband and I have become accustomed to certain brands and we pretty much stick to those brands. As I approached the toothpaste aisle to purchase our preferred tube, I noticed that there were about 10 other brands available. Within those 10 other brands, there are different aspects or features to choose from: cavity-fighting, whitening, enamel-protecting, organic, dye-free, gel, paste, etc. This variety of choice seems to be available in just about every aisle of the grocery store. There are as many different brands and types of soup, pasta, ice cream, bread, milk, etc. And the same is true in department stores where you can purchase bath towels, sheets or underwear in 20 different colors. Or choose from a dozen different kinds of light bulbs or Christmas ornaments or pet food.

I remember when I first went grocery shopping for my widowed uncle who didn’t like to cook for himself. He reached a point where he didn’t like driving in winter weather so I took over his grocery shopping while I did ours. His list was usually pretty simple: frozen (microwaveable) meals, some fresh fruit, milk, eggs, bread, ice cream. Because we had a close relationship, we both assumed that I’d return with things that he’d like. I carefully looked at labels because he had congestive heart failure and was supposed to limit his sodium and cholesterol intake. I probably spent an extra hour in the grocery store making what I thought were sound, healthy choices for my uncle’s health and well-being.

But the first trip to the store proved a learning experience for each of us. I purchased everything on his list, but not all the brands that he liked. I purchased several of the healthier frozen meals (they are few and far between) only to learn that he’d tried them before and HATED them. After we sifted through the bags of groceries I brought to him, we ended up with two bags of items to be returned for the brands that he preferred. Back to the store I went … but this time, equipped with the knowledge of his preferences.

No matter how well we know someone, we can’t know everything about them. We may not always know that they’ve tried something before and didn’t like it (and would not want to have it again). We may not know that they prefer a brand name item over a generic item. Like my first grocery shopping trip for my uncle, we won’t know likes/dislikes unless we have a conversation before jumping into the task. Even when we try to make sound “healthy” choices, we may be choosing something that isn’t desired.

Caring Choices believes that having multiple and frequent conversations is the only way to fully understand what someone else wants/needs related to healthcare choices. Just like within a grocery or department store, we will each be faced with overwhelming healthcare choices for treatments, procedures, medications, etc. Don’t make someone you love try to figure out which “brand” you want. Give them the power of knowledge. You CAN talk about this.

A Finer Point

Unless you’ve been completely unplugged, you likely heard the story of 29-year-old Brittany Maynard who opted to end her life with physician assistance in Oregon at the beginning of November.

Her story was big news just 30 days ago. Media focused on major points: her age (“so young”), her family’s move to Oregon from California so that she could avail herself of a death with dignity, and her plan to drink a cocktail that would allow her to peacefully go to sleep surrounded by her family and best friends. Opposition of course touted that life is too precious to be left up to individuals to decide when enough is enough. Some segments of society lamented that surely there was more that could have been done to save Brittany’s young life (or prolong her life) or that “suicide” was not the “right” answer.

But as I read several accounts and watched Brittany’s videos, I saw a finer point in her story. To me, even more important than the type of cancer she had, or her age, or even her decision to end her life, something else stood out. She made her own decisions based on research she read about her disease and the survival rates. She weighed risks and benefits of treatment, and she understood that a cure for her particular cancer didn’t exist. Brittany had conversations with her husband, her parents and her best friends about how she defined quality of life and how she wanted to control her eventual pain. She lived her life up to the very last day her body allowed, and she died as she planned.

The finer point: She made decisions and she talked about them with people she loved. Yes, it is difficult to think about our eventual deaths (our own or of those whom we love). I imagine it was very difficult for Brittany to contemplate death at the young age of 29. I also imagine it was extremely difficult for Brittany’s mother to watch her daughter go through this process and to learn of her decision to stop her life before it was no longer recognizable to her. The point is, this is never an easy conversation or a simple decision. But, the more we can talk about it, the easier it becomes. Not necessarily to embrace death, but to accept that it will happen. To plan for things we can contemplate as well as things we cannot and to make decisions based on how we define quality of life. And, finally, to talk about our decisions with those we love so when (not if) they are forced to make decisions on our behalf, they will have the knowledge of our decisions and the confidence to advocate for us when opposition arises.

Caring Choices salutes Brittany Maynard and others like her who have opted for a death with dignity. We also support those who want to “fight” through disease and treatments with the hope for additional life. Our mission is to support families having conversations and making decisions and we hope that everyone experiences the kind of closure that Brittany’s conversations likely provided her loved ones after her death.

A Box of Chocolates

While enjoying wings and pizza with good friends last night, the movie Forrest Gump was on television in the background. In that movie, Forrest often says his mother always told him life was like a box of chocolates and you never know what you’re going to get. I think we can dig down a little deeper and say that in getting older and in dying, we also never know what we’re going to get.

Anyone who’s ever received a box of chocolates knows that there is usually (not always) an illustrated guide included to tell you what is inside the chocolates. You can then more easily choose which pieces to eat, rather than poking your finger in each piece to figure out what it’s like inside. For me, those thick, creamy fruit-flavored centers simply ruin the chocolate and biting into one of them without the guide is a little, well, frustrating. In that respect, I think healthcare decision-making can also be like a box of chocolates.

We don’t know exactly what’s ahead for our health, or how/when changes to our physical and mental states will impair our abilities to care for ourselves or to speak for ourselves. But I suspect that many of us know a few things that we don’t want as the ravages of time and declining health overtake us. As well, there may be a number of things we want to accomplish before time and health run out.

Talking about the kind of care you want (or don’t want) and writing down your preferences can give your loved ones the “illustrated guide” to advocate for your choices, prepare themselves to make decisions on your behalf, and to relieve the burden of decision-making from their hearts and minds. It gives them the tools to see what’s “inside the chocolate” without “poking their fingers” at multiple options and hoping they find something you would like.

Caring Choices can help you prepare the guide for your loved ones so they don’t have to make guesses about what you like (want) or don’t like (want). Each of us has our own preferences, but without sharing them we may end up with the cream-filled centers that we don’t like (want).

When Miracles Don’t Happen

This morning I watched a video on Facebook. The 10-minute video shared the story of a young couple and their pregnancy. Spoiler alert: from a very tragic prognosis a healthy baby boy was delivered. A miracle some might say. What impacted me the most from this video was that although this couple had a very strong faith in God, and they prayed for a miracle, they also planned for the worst. The husband spoke about planning for his as-yet-unborn son’s funeral and making the necessary arrangements based on the medical prognosis and the likelihood that their son would not live through the pregnancy. And so, they planned for something they did not want to face. They did not give up hope; they did not lose faith. They planned in case a miracle didn’t happen.

Planning for the worst does not diminish Hope. Planning for death does not negate Faith. Making healthcare decisions acknowledges our finite life, helps our loved ones know what to do when things go “wrong”, and provides opportunities to experience the richness of life and quality of relationships before we die.

Plans, discussions and decision-making allow us to focus on what is most important at the end of life: being able to spend and enjoy valuable time with our family and friends. Planning emphasizes Love.

Caring Choices hopes that miracles happen for everyone. Many of us will simply go quietly into the night while others may still have lengthy experiences with chronic illnesses that slowly claim our lives or acute terminal illnesses that require quick decisions. Hope, faith and love are important in life; they can become even more important when facing death.

F.E.A.R.

I looked up the acronym F.E.A.R. and found some pretty interesting interpretations online. I again realized that interpretation is based in perspective. Here are some of the online acronyms:

Forget Everything and Run
Face Everything and Rejoice
Finding Excuses and Reasons
Fear Expressed Allows Relief
Frantic Effort to Avoid Reality
Face Everything and Respond

Based on the opposite interpretations these statements illustrate, fear, or rather our reaction to it, can either motivate us or stop us in our tracks. And so it goes with end-of-life conversations. Many people we’ve come in contact with express fear of just starting end-of-life discussions with people they love (or with people to whom they provide healthcare services). Others fear having to make decisions for a loved one who can no longer speak for themselves. Some fear that just talking about death will cause it to happen to someone they love, or that someone they love will give up their fight.

I once approached a woman with a very serious, life-limiting illness about what kind of care she wanted. She was obviously near death yet no one in her circle had any idea if, or how far, she would want to pursue treatment or surgical intervention. The physical changes in her body were blatantly evident of impending death (probably within 24-48 hours). Those in her circle recognized that she would likely not live “very much longer” but no one was prepared to make decisions or even ask her the questions that needed to be answered at this moment.

This was not the time to ask her about her values and beliefs, to abstractly discuss options, or to define the possible outcomes of aggressive treatment versus “doing nothing”. This was a time for pointed, direct questions. So, I checked my own fear at the door and asked her what needed to be asked. Did she want to go back to the hospital? Her answer was “No.” It was likely a surgeon would need to perform extensive, invasive procedures to try to save her life (if she lived through the surgery). What would she tell a surgeon if the only option was amputation? This time, her response was an emphatic “NO!” Does she want to be kept comfortable with her pain managed, even if she becomes unconscious? “Yes, I want to be comfortable. Knock me out.”

What was my own fear in advance of this situation? Would I upset her circle of family and friends who were at bedside in her home to the point they would ask me to leave the home? Would I ask the right questions in the right order? Would she respond or shut down, giving us no insight on how to proceed?

My fears were unfounded. Her family and friends were relieved that I was the one asking those questions. They were too emotionally invested to utter the questions that so desperately needed answers. The order of questions seemed to flow from me as if guided by another Realm. She responded concisely, clearly articulating her beliefs and values in very simple responses. We were able to put a hospice plan in place quickly. Her pain was managed; she was made comfortable. She died peacefully with her best friend at her side 19 hours later.

With death that close, we were all forced to “Face Everything and Respond.” That experience might suggest that the previous responses were to “Forget Everything and Run.”

My husband and I are ridiculously hooked on the show “Breaking Bad”. We were binge watching it recently and one of the scenes talks about fear. In that scene, one man advises another about how to face his fear: “Get up, get out in the real world and you kick that (expletive) as hard as you can right in the teeth.” I think we have a responsibility to ourselves and those we love to do just that, especially with the general fear of talking about death and making our wishes known. Forcing acknowledgement of fear and taking action to face it takes courage. The courage comes from wanting to make things easier (or more comfortable) for someone else. It’s not rocket science but it is difficult. Continuing to run from fear only gives it more power over us and robs us of our freedom of choice.

Caring Choices offers a tool to help individuals and families face the fear of conversation. It becomes easier than you might imagine to talk about death, especially if you start conversations when you’re healthy. You can take your time examining values and beliefs, people and places and understanding definitions and resources long before you’re faced to make decisions about complex care. Contact Caring Choices and let us help you “Face Everything and Respond.”

Informed, Not Terrified

This past week, I read an article in The New York Times about women and heart attacks. Amid all the information about the differences between women and men with heart attack symptoms, survival rates, and treatments, one particular line stood out to me: “It’s good to be informed, not terrified.” And I thought, what a great statement! This line has a place in the work that Caring Choices is doing.

When we talk to people about having personal conversations and making healthcare choices with their family and friends, many have that deer-in-the-headlights look. They’re terrified to start these conversations for a variety of reasons:

Some fear that somehow just talking about death will bring it about.
Many are afraid their loved ones will become irreparably sad or depressed.
Several “just don’t want to go there.”
Others are concerned that too much information will make them fret and worry, and take away their focus on just living/enjoying their lives.

Since no one has a crystal ball to help us anticipate which disease(s) will befall us or to know when a trauma/accident will occur, it behooves us to begin thinking now about the “what if” scenarios that accompany illness, accidents and simply getting older. Not that we can consider EVERY possible outcome of aging, disease, or crisis; but having information about disease trajectories of which we may be at higher risk, or the common maladies of advanced age, need not terrify us.

Nearly every day, I encounter an elder person who says:

“I didn’t expect to live this long/be in a nursing home.”
“I don’t want to be a burden to my family.”

Or, I encounter a family member (usually an adult child) who says:

“I just can’t take care of Mom at home anymore.”
“I wish I knew what Dad wanted us to do.”

These comments illustrate the importance of having conversations before we reach ripe old ages, before chronic diseases reach end-stage, and before a trauma occurs. Having information does not provoke the occurrence of health problems. Sharing information does not necessarily produce sadness, depression or fear. But we’ve seen that NOT having conversations and making decisions does promote chaos, guilt, fear, confusion and, sometimes, dissension. Which scenario would you like your family to be in when you reach your end-of-life stage: informed, cooperative, emotionally-supportive advocates or uninformed, quarrelsome, emotionally-conflicted adversaries?

Caring Choices endorses having all the information you need to make decisions and have conversations without being terrified. Sometimes that means you and your family need someone who can help you begin the conversation and mediate stalling factors. We can help. You can talk about this.

It’s the Little Things

Room service. Crossword and Jumble. A good movie. Quiet, alone time. The thoughtfulness of my husband. Time to think and heal. Love. Caring. Respite.

My husband gave me the opportunity on Friday night to enjoy a relaxing evening in a luxurious hotel room following a challenging week of work.

My job is demanding. It’s often chaotic, sometimes overwhelming and always (eventually) rewarding. This week, I experienced a verbal attack from a family member that was unprovoked and unwarranted and, as I was able to realize days later, had nothing to do with me. I was also able to comfort a different family making a hospice decision.

In grad school, we were encouraged (and required) to reflect on our experiences and write a weekly “process recording” about the experience, our reaction(s) to it, and future learning opportunities. My initial reaction to the verbal attack was shock. I could not believe that such a knee-jerk, volatile eruption would occur in my work setting over an unintentional clerical error. Next, I felt completely inadequate and ill-prepared to offer an appropriate response beyond a mea culpa. I stammered at the sheer audacity of the arrogance from which the words were hurled. And I wanted desperately to say something as stringent in rebuttal; instead, I just stood there and took the “punches”. Still, I could neither fathom the verbal venom spewed at me nor buffer the environmental disruption to those near my office at the time.

After the eruption, and a handoff to another professional, I composed myself. I had a different family to visit. This next family member couldn’t have been more kind and concerned as we discussed hospice care for a long-time spouse. Life review. Pain and symptom discussions. History of past medical professional promises and “useless, invasive procedures”. “I just want her to be comfortable”.

As difficult as the topic of hospice and the death of a loved one may seem, this conversation was MUCH easier for me to handle than the first. Emotions were just as prevalent, but they were different. The focus of attention was different. It was simply two people talking about the comfort and care of a loved one. Two people working together to determine the best plan of care. Something the first episode could have been as well.

What I’ve learned from these two very different situations is that when dealing with the physical decline of someone they love, people will act and react in very different ways. For some, concern is focused on care and comfort. For others, responsibility for finances and other decisions take precedence. Still others may not know where to focus their attention. Some people are kind and appreciative of information and support. Others lash out in anger (which may stem from fear of the unknown future of their loved one). Elizabeth Kübler-Ross wrote extensively about the stages of grief. These two scenarios I experienced illustrate that grief accompanies all forms of loss: death, independence, relationships, changing family roles.

I know that it’s important to approach each new resident admission with fresh eyes and renewed concern. Although I’ve done dozens of admissions in the last few months, it is likely the first nursing home admission for residents and their families. Each individual will have their own concerns, their own focus of attention, their own emotions, and their own reactions to this process. My job is to make them all feel heard, comforted and cared for as they embark on this new journey regardless of how they may make me feel. I’ve also learned that I need to insulate myself from the negative emotions and outbursts of others – grow a thicker skin; that’s a more challenging chore for me.

So I think I’ll encourage everyone to focus on the “little” things like Jim made me do on Friday night. Love, caring and respite for all involved. It’s the same approach to be taken in conversations about healthcare choices and decisions.

Caring Choices is aware that difficult conversations are made more perplexing when emotions get out of control. If we begin talking from the place of love and caring, conversations will flow more easily. If we start talking before a crisis hits, we’ll be better able to make decisions based on love (and respite) and not something more complex. It really is the little things in life that make it worthwhile.