Reactions to Role

_Not many things can be as rewarding, yet being as taxing on our personal resources than providing solid, consistent, nurturing, supportive care to another human being.  Being a caregiver does not mean that your own life as you know it should end!  You don't physically change when your patient receives their diagnoses tho you probably do feel all the emotions that come with hearing you have a life threatening disease. 

Just as your patient is adapting and reacting to being very sick, you will find yourself on a roller coaster of emotions as you adapt, learn and react to your roll as a caregiver.  Generally you will find more negative emotions than positive ones so you need to be prepared to recognize your emotions as they occur. 

Positive Emotions

_PrideSatisfactionEnjoyment

Negative Emotions

Remember that having emotions is something that every person deals with.  Education is again key to dealing with any new emotions that the diagnoses and on-going care may bring up.  Just as knowing and recognizing the physical signs of cirrhosis complications helps you deal with them as they come up, recognizing your emotions, and those of your loved one, helps you to know how to deal with these new feelings.  We all need to be aware of certain stages as patients and as caregivers: the Kübler-Ross model, commonly known as the five stages of grief.  The model describes a process by which people deal with grief and tragedy, especially when diagnosed with a potentially terminal illness or catastrophic loss. 

The following discussion of the Kübler-Ross model is from Wikipedia and is quoted without permission. 

Start quote The progression of stages is:

Denial—"I feel fine."; " This can't be happening, not to me." 

Denial is usually only a temporary defense for the individual.  This feeling is generally replaced with heightened awareness of positions and individuals that will be left behind. 

Anger—"Why me?  It's not fair!"; " How can this happen to me?"; " Who is to blame?" 

Once in the second stage, the individual recognizes that denial cannot continue.  Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy.  Any individual that symbolizes life or energy is subject to projected resentment and jealousy. 

Bargaining—"Just let me live to see my children graduate."; " I'll do anything for a few more years."; " I will give my life savings if..."

The third stage involves the hope that the individual can somehow postpone or delay a negative ending.  Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle.  Psychologically, the individual is saying, "I understand I am sick or may die, but if I could just have more time..."

During the fourth stage, the individual begins to understand the certainty of their situation.  Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving.  This process allows the individual to disconnect from things of love and affection.  It is difficult to attempt to cheer up an individual who is in this stage.  It is an important time for grieving that must be processed. 

Acceptance—"It's going to be okay."; " I can't fight it, I may as well prepare for it." 

In this last stage, the individual begins to come to terms with his disease and/or mortality or that of his loved one. 

D’s note: Acceptance is also the stage that we move forward in our treatment, looking for a positive outcome.  This is the time that we begin to take care of ourselves as best we can; living each day for what it is working towards a future that may exist if we can get a transplant in time!  It happened for me! 

Kübler-Ross originally applied these stages to people suffering from terminal illness, later to any form of catastrophic personal loss (job, income, freedom).  This may also include significant life events such as the death of a loved one, divorce, drug/alcohol addiction, the onset of a disease or chronic illness, an infertility diagnosis, as well many tragedies and disasters. 

Kübler-Ross claimed these steps do not necessarily come in the order noted above, nor are all steps experienced by all patients, though she stated a person would always experience at least two.  Often, people will experience several stages in a "roller coaster" effect—switching between two or more stages, returning to one or more several times before working through it. 

Significantly, people experiencing (or caretakers observing) the stages should not force the process.  The grief process is highly personal and should not be rushed, nor lengthened, on the basis of an individual's imposed time frame or opinion.  One should merely be aware that the stages will be worked through and the ultimate stage of "Acceptance" will be reached.