Category Archives: Family Caregiving

Where are the answers?

“Elephant in the Room ™” is a new discussion and decision tool my wife created and I have helped bring to existence. It involves a series of 96 cards in 4 categories:

  1. Values and Beliefs: to entice thought on one’s belief systems of life without restrictions.
  2. Complex Care: using multiple real and potential “what if” situations which could possibly impact the care and needs of a dependent, critically advanced, complex disease or care circumstances.
  3. Definitions and Resources: to assist in the exploration of who-what-where-when-how-why of caregiving and preparation for future needs as time, trauma or disease dictates.

4: People and Places: to stimulate an examination of the resources, discover and help establish a plan for the utilization of resources for current and/or future needs.

Each of the 24 cards are formed in the shape of an Elephant Footprint in representative of the “steps” that are often necessary to achieve the most positive outcome for easing the stress of sudden or chronic life changes we all will eventually face someday.

During a recent conversation about “The Elephant in the RoomTM” I was asked the question:  “Where are the answers?”  Every time I have an opportunity to discuss end of life issues, advanced care planning or general care for the declining independence of someone, I am always eager to share our Elephant and offer it as an additional motivator to encourage continued discussion and thought.

The variety of reaction from people after they see the Elephant is as individual as each personality could be. The most important impression I try to make on everyone is that there are no answers that will apply to everyone in every situation. What is best for me may not be best for you. What is desired by me may not be acceptable to someone else. What is needed for each of us may be impossible to determine ahead of time. But what is most important of all is that there are discussions along these lines to help families and caregivers understand where to begin in coming up with answers.

Life is too short to ignore the inevitable consequences of living. And to spend all day focused on death is certainly no aim I have intended. After 20 plus years in healthcare, in a host of different environments, I can only say that the softest path for an exit from this earth is not always the easiest. I once read something that said we have replaced the need for comfort above the need for happiness. In relation to pain, planning, and lifestyle, I can see the truth in that statement. There is certainly a time for pain medication to ease suffering, but not at the expense of a little exercise to eliminate potentially avoidable, severe pain if possible. And not with a complete disregard for the benefits of behavior modification or non-narcotic alternatives. Not all plans are perfect; ongoing discussion and change is needed to adjust plans as options become available and progress brings about more choices. I understand the right of everyone to make their own lifestyle choices, but there are very few of us who are incapable of learning new ways to live if we are facing serious consequences from the “normal” routine of our habits.

Caring Choices has developed “Elephant in the Room™” to be a guide for the inspiration of thought. Not to give answers. We are hopeful that the tool we have created will bring a sense of relief and comfort to a discussion that is all too often filled with fear and despair. Please join us in the hope we share that review of the Elephant can bring family, friends, and caregivers a little closer to understanding what is important to all of us when there becomes a need to finally acknowledge that there really is an “Elephant in the Room™.”

© 2014 Caring Choices

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.

(c) 2014 Caring Choices

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.

(c) 2014 Caring Choices

The Randomness of Life

A woman’s life hangs in the balance, the result of the random act of a rock being thrown from an overpass.  A young American doctor contracts the Ebola virus while working to save Liberian victims of the same disease. Terry Schiavo.  Nancy Cruzan.  Karen Ann Quinlan.  Jahi McMath.

Random acts (whether of violence, accidents, or health crises) occur with lightning speed across our world with differing outcomes:  some people live, some die; others are in limbo in between life and death – fighting, struggling, coping, surviving.

Obviously, we can’t know when these random events will occur or to whom they will happen.  We could all let imaginations run wild contemplating the random events we might encounter.  That would likely drive us all a bit mad.

But when I read about people like those in the opening paragraph, I can’t help but see the opportunity for each of us to wonder what we would do if it were happening to us or someone we loved.  And not just wonder … but have real, honest, heart-and-soul-searching discussions with those we love.  Loved ones are more-often-than-not put in the position of making healthcare decisions on behalf of a loved one who cannot speak for herself/himself.

It is hard to imagine what one would do in countless situations.  Contemplating our own death can stir emotions we’d rather let unexplored.  But saving our loved ones from having to make heart-wrenching life-or-death decisions can be our last loving act regardless of which random event put us in that situation.

We lift up positive thoughts and healing prayers for those who are victims of random acts and for their families who are forced to face decisions they’d rather not.

Caring Choices hopes individuals and families will contemplate the randomness of life and begin conversations.  Making decisions while you are healthy may not seem appealing to many. Perhaps saving your loved ones from agonizing, fast-paced decision-making in times of a medical crisis may offer some motivation to start discussions.

ASS*U*ME

We all make assumptions on a daily basis.  There are several definitions of “assume”:

      • to take for granted or without proof
      • to take upon oneself
      • to take over the duties or responsibilities of
      • to take on (a particular character, quality, mode of life, etc.)
      • to take on; be invested or endowed with

We assume the sun will rise and the earth will continue to rotate around it.  We assume we know something about a person based on the color of skin, religion, politics or lot in life.  We assume entitlements or rights.

When we leave our homes for work or play, we assume we will return safely.  When we say goodbye to family and friends, we assume we will see each other again.  When we say goodnight, we assume we will wake in the morning.

We assume positions, responsibility, offices, duties, control, obligations and characterizations.  We assume roles at work and within our families.  We assume.

There are also deep assumptions entrenched in the world of advance care planning and healthcare choices.  Inevitably, whenever we are talking about personal healthcare choices and decisions, someone will make this statement when asked if they have had a conversation or prepared documents:  “My [family member] knows what I want.”

That is one huge assumption!  How can anyone know what one wants if there is no conversation, no dialogue, no personal decision-making, no clearly-defined documentation?  Do we have the right to assume that our family members will make decisions for us?  Do we have the right to assume that our family members WANT to make decisions for us?

Assuming someone else can and will make healthcare decisions for us can force an undue burden on them psychologically, socially and physically.  Assuming that our children will take care of us is ill-conceived, especially if they live far away.  Assuming that loved ones know what we want without ever talking about options and choices is irresponsible.  People often say, “I don’t want to be a burden”.  And I get that.  But too often people ASSUME that loved ones will know what to do and when to do it.  When they don’t know and are forced to “guess”, that assumption becomes an enormous burden.

And you know what they say about assumptions (see title of this post).

Caring Choices can help alleviate the undue encumbrance of ill-placed assumptions.  Relieve the burden of assumptions by having conversations and making decisions while you are healthy with those you love.  Every day you put it off puts you one day closer to forcing loved ones to assume they know what you want.

(c) 2014 Caring Choices

Elephant in the Room

Caring Choices was conceived as an avenue for exploration of unknown paths. Emotional passages in the minds of those who are either forced, or choose, to face the decisions surrounding the logistics of dying. To say this is an unpopular topic is to minimize the reactions we have had to date. To say that this is a fact everyone must face eventually is a fact as unavoidable as death itself. And on and on then go the Blogs and dialog, questions and scenarios in hopes of preparing for this end. Not as if to assume the answers are easily found. In fact, the answers are often never known.  More important than the correct answer are the psychological benefits of the discussion itself.

And naturally after most conceptions, comes birth. The birth for us has come in the form of an idea. An idea that unknown to me was developing slowly year after year in my wife’s mind.  While listening to me repeat over and over the same phrase to describe the often devastating impact of my discussions (with patients and families during my Home Care, Hospice and Transitional Care admissions), a seed was planted. “Elephant in the Room” was that phrase.  To me, it represented the unspoken understanding that life-altering changes were rapidly at hand, and repeatedly never addressed. Most always, these changes had been a long time coming, and too often the consequences remained unknown. Certain formal planning had been made of course, including my presence which indicated discharge planning or outpatient referrals that acknowledged needs at hand. But often the long-range outcomes and personal emotional impacts were just never talked about.

Enter the birth of “The Elephant”. Elephant in the Room™ is our combined effort to help fill the voids and gaps in communication among family members and loved ones who struggle with discussing and planning for these inevitable changes.  Four specialized categories of 96 questions/scenarios represent our collaborative experience as hospice nurse, medical social worker, family caregiver, friend and sibling in a series of questions we encountered at some point in our lives and careers. The answers to these questions are up to each individual as they explore their own unique set of circumstances. Currently in the production stage (and Patent/Trademark Pending) we offer this concept as a guide for use in almost every situation calling for the thoughtful consideration of how life’s changes will affect us.

Caring Choices offers Elephant in the Room™ as an opportunity to engage family and friends in meaningful exploration of the emotional and logistical preparations that life changes will require of all of us. Time and again the situations around us change, and sometimes suddenly without expectation. Please contact us for more information on how to bring attention to and thoughtful discussion about the Elephant in your room.

 

© 2014 Caring Choices

 

 

Frustrated

Nearly every day I hear at least one person say “I never expected to __________.”  Often, the rest of that sentence is “live this long.”  But I have also heard these other endings to that sentence:

    • …be in this situation.
    • …need help to take a shower (or change my clothes, or feed myself, etc.).
    • …live in a nursing home.
    • …outlive my husband/wife.
    • …have to make these kinds of decisions.

It is frustrating, confusing and sad to have to consider leaving your home to take up new residence in assisted living or a skilled nursing facility.  I watched my uncle struggle with this decision a month before his death.  He could no longer live alone; he could no longer walk without assistance.  His legs were dying from the toes up and eventually he couldn’t even stand on his own.  He needed 24/7 nursing care and for many of us, there’s only one place to get that – a nursing home.

It’s also frustrating to offer options and suggest solutions to someone forced to confront these “never expected to” statements and then have every idea discounted as unacceptable.  People don’t like strangers coming into their home to provide care.  They don’t want to leave their home.  It sometimes feels like a no-win situation, but the dialogue must continue because the inevitable will occur with conditions worsening into a catastrophe.

There aren’t too many people who choose to leave their home and move into a facility.  Usually that change is foisted upon them by infirmity in body or mind or both.  If there is no one available to provide needed care or there are no funds to pay private caregivers, the only option may be a nursing home placement.  Nursing home residence need not only be seen in a negative frame. Along with 24/7 nursing and personal care, they also offer ancillary services that can enhance an elder’s life.  There are opportunities to enjoy meals in dining rooms with other elders who may be in similar situations.  There are always activities happening that can bring small or large groups of people together with music, games or spiritual services.  There are social workers on site to assist with psychosocial issues that arise (and they will arise). Many nursing home residents can even eat ice cream three times a day if they want it!

So, before you ask your children to promise to never put you in a nursing home or promise your loved one that you’ll never put them in a nursing – go out and visit your local nursing homes.  Talk about what options are available if you want to remain in your own home until the last possible day.  But also talk about what happens when you become too ill, too confused, or too weak to remain in your own home.

While nearly 80% of Americans expect to remain and die in their own homes, fewer than 25% of us will actually be able to do that.  Most people over age 65 are living with 2 or more chronic diseases which eventually impact independence and ability to care for ourselves. We need to manage our expectations.  Living well into our 80s with sound body and mind is not likely for the majority of us.

Caring Choices is available to help individuals and families figure out how to stay at home for as long as it is safe and possible, and to make plans for when it is no longer an option without all the frustration.  No one can promise that nursing home living isn’t in our future.  We need to talk about options without making promises that can’t be kept.

(c) 2014 Caring Choices

Legacy Work

I’ve had the pleasure of working with a hospice family who has embraced the gravity of the situation by having difficult conversations, making decisions and plans, and are now savoring every minute together before their last one occurs.  The patriarch of the family is dying and his family has rallied around him.  This couple and their adult children, and even their older grandchildren, have accepted his diagnosis and have come to an understanding of his prognosis.  They hold back nothing; they talk about it all in the presence of each other, in audible voices.  No one in this family whispers the word “cancer”; they address it out loud.

I recently spoke with this man and his wife about leaving a legacy for their kids and grandkids.  It’s something I offer to do with hospice patients who are amenable.  Sometimes I help a patient write a letter to a spouse.  Other times, I make a collage of photos and voice recordings put to music that family members can run on a computer loop when they want to see and hear their loved ones.  Many times, though, people are reluctant to do legacy work because they feel that it will worsen or lengthen their loved ones’ grief.

To my surprise, this man said that he’s already written letters to his adult children, which they will receive from his wife after his funeral.  He’s written letters to his grandchildren to be given to them when they reach milestones:  16, high school graduation, 1st year of college, marriage, birth of their first child, etc.  He’s included musings and wisdom from his nearly 60 years on the planet.  He’s written his obituary although he wonders who will really care about all the things his wife suggested he include in it.  He told me privately that he’s also written a love letter to his wife which he’s asked a friend to give to her at a prescribed future date.

In the meantime, this family has had open communication throughout his treatment and now hospice experience.  They have had the blessing of coherence and time to say things they want to say, and they have said everything.  With all of the plans made, this family can now concentrate on the immediate moments of their lives – enjoying baseball games and picnics and whatever else they have the energy to do.  These letters that this man’s family will receive after his death will likely provide his loved ones with great comfort.  These are his messages, from his heart, that they will be able to hold in their hands any time they want.  They will be able to read his words and in some cases hear his voice (recordable books for kids are a fantastic invention!).

We so often think that death is the finale.  That once we die, there’s nothing left of us except for some photos and a few good memories that a handful of people will hold onto.  But legacy work is more intentional.  It gives you the opportunity to put into words things you may not feel comfortable saying out loud or in person; things others may feel uncomfortable hearing.  The movie “Tuesdays with Morrie” contains one of my favorite lines, spoken by Morrie Schwartz:  “Death ends a life.  It doesn’t end a relationship.”

With legacy work, the relationship continues perhaps more easily and more comforted when there’s something tangible to hold and read like a letter, or a journal, or a card that contains the sentiments of someone who has gone on before us to wait patiently until we join them.

Caring Choices encourages open conversation and sharing of feelings long before a terminal diagnosis enters your life.  We can help have those difficult conversations and we can help you begin your legacy work.

(c) 2014 Caring Choices

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.

(c) 2014 Caring Choices

Bridging the Extremes

Just about everywhere you look these days you can easily find extremes.  Polar opposites, some might say.  I’m sure some came easily to your mind as you read those first two sentences. Maybe even some of these:

      • Democrats / Republicans
      • Liberals / Conservatives
      • Pro-Choice / Pro-Life
      • Gay Marriage / Traditional Marriage
      • Big Government / Small Government
      • Socialism / Capitalism
      • Black / White
      • Atheism / Christianity

When we only ever see the opposing sides of an issue, it can be downright difficult to get people to begin a conversation that might bridge the extremes and facilitate dialogue, understanding, cooperation, and even advocacy.

It’s not very different when talking about advance care planning or “end-of-life” decision-making.  Quite often people initially fall into one of two extremes too:

“Do Everything” / “Pull the Plug”

We really need to be talking about what will determine our quality of life as we near our final years, months, weeks, days, and moments.  These “all or nothing” statements, that are so frequently uttered when someone in a family asks about care preferences, serve no real purpose.  They give no concrete direction to those who will be making decisions on our behalf.  “Do everything” begs to be followed with the words “until what/when”.  “Pull the Plug” provides no definitive time or circumstance for the actual act.

Can we plan for everything that might occur?  No.  Can we make plans for situations that may not occur?  Sure. Will my family still need to make some decisions for contingencies I have not planned?  Probably.   What we need to ask ourselves is whether we want our family making decisions based on supposition and conjecture (e.g., if Dad knew he was ‘like this’, would he want “X”)  or rather making decisions based on heartfelt, open conversations in which we have shared our decisions and which we direct them to carry out.

Somewhere between “Do Everything” and “Pull the Plug” are many opportunities to start (and continue) discussions based not only on personal values and beliefs but also on what our loved ones tell us they think they will be able and willing to do to help care for us.  Relieving the burden of decision-making from our children, our spouses, our family, and our friends is a precious gift we can give those who are trying their best to care for us.

Caring Choices provides the bridge to help families take advantage of the conversational opportunities that exist somewhere in between the extremes.

(c) 2014 Caring Choices