​For the last few weeks we have been exploring the importance of the caregiver taking good care of themselves.  Self-care is always a challenge.  We are far more likely to focus on taking care of others.  We may see self-care as selfish, narcissistic, too much trouble, or simply a needless bother.  We dismiss and disregard our needs and stay busy taking care of someone else.
 
However, there may come a point where the dismissal of our needs may become more difficult.  We may have exhausted our resources in self-care and cannot continue.  At that point we may start playing the Blame Game. 
 
“I would not be in this position …
…If they (the patient) would have taken better care of themselves.” 
…If I had just had a little help from my sisters or brothers.”
…If our healthcare system really cared about our well-being.”
 
In short, when we have disregarded our self-care and have reached the end of our rope it is anyone else’s fault but our own.   Our health has suffered because we stopped eating right, getting exercise, or going to the doctor.  Our money may run out because we have been living on savings in order to be with Mom full-time.  We may feel lonely and isolated because we have stopped making contact with our friends.   We now have no reason to get out of bed because Mom and Dad have died and we have no one left to focus on.  The blame game becomes our only refuge from the emptiness in our soul.
 
Being a Caregiver is a gift!  To be able to care for our Mom or Dad as age and infirmity take their toll can be a life changing experience.  It can reacquaint us with parents who have become strangers to us.  It can open our hearts and minds to ourselves in ways that are unique and deeply enriching.  It can help us find a deeper meaning and purpose for our lives.  It can show us that we are an essential part of the “Circle of Life.”
 
But, like any other gift, caregiving must be received and used responsibly.  We must keep it in perspective and not allow it to swallow who we are.  We must recognize when it is taking over and be able to step back and rediscover ourselves apart from our caregiving.  It means staying in touch with our needs and doing what is necessary to address them. 
 
Stay in touch with your care-giving as a gift to you and your loved one.   The blessings it offers will continue to arrive each day.
 
Blessed caregiving, my friends.
 
Bob

 
The Gift of Caregiving
 
Caregiving as a Spiritual Gift

​As hard as caregiving can be on the body, it’s impact on the soul can be even more devastating.  Unfortunately, its impact may not be as self-evident to the caregiver themselves.  Caregiving can feel quite good to a soul, especially one that struggles with feelings of self-worth and value.  Committing our life to helping someone else can fill that void and help us enjoy our inner dialogue.  Unfortunately, that feeling can be quite addicting.  As our negative internal feelings return, we may pour ourselves more and more into our caregiving.  We may not even see the process happening until the physical or mental effects become visible.  If this process is left unchecked we may experience the death of the soul by self-induced martyrdom (or SIM).
 
Being a martyr has a long and illustrious history in our Western Culture.  It rises out of the stories that circulated in the earliest church about people who sacrificed their lives to defend the faith.  In military and civil settings, women and men who have given “the last full measure of devotion” or made the “ultimate sacrifice” are honored and remembered with public memorials so that we might remember and emulate their example.  Martyrdom reinforces the values of a culture and supports a system of social support for those who make sacrifices in their daily lives.  Martyrdom is a good thing when the martyrdom is thrust upon us by circumstance and we respond for the “common good.”
 
Self-induced martyrdom is another creature entirely.  Others have defined SIM as the Shadow Martyr or the Martyr Complex.  In essence, SIM exaggerates or feigns the suffering they  “must” endure as a caregiver in order to gain sympathy or attention from others.  It allows the inner person to counteract the lack of self-worth or value in their internal dialogue.  They may pat themselves on the back and take their physical or mental struggles as a sign that they are a “good person.”  They may also look for support from those around them to reinforce their own inner struggle.  There is a wide scale of how the SIM expresses their martyrdom.  It may be as simple as doing a little more than necessary to a family member or as devastating as completely losing themselves in their caregiving.
 
SIM seeks to cope with unwanted feelings that linger in the soul.  It supercharges the will to engage in “other-directed” activities.  It seeks and likely receives social reinforcement to continue in their “altruistic” living.  It is the classic definition of doing the right things for the wrong reasons.  It is important to note that SIM is not about taking pride in one’s caregiving.  It is not about caregiving at all.  The person being cared for is an object of their care rather than the subject of their concern.  The real subject is themselves and the conversation that takes place in their soul.  A person with SIM may have a series of people that they use to support their need to overcome their feelings of inadequacy of lack of worth.
 
As we become more and more dependent on SIM to feel good about our lives we risk the death of the soul.  Once that caregiving relationship ends with the loss of the patient or family member we have to find another object for our care.  Even more tragically, if, for some reason, the charade becomes unmasked and we see our caregiving as purely selfish, we have nowhere to run.  The inner voices become angry and brutal.  The soul begins to whither as we lose our will. We our best to block our emotions.  We become an empty shell.
 
It is important to stress that SIM comes in all shades.  And, there is a great deal that can be done to prevent the death of the soul.  Friends and companions can help caregivers find meaning and value in their lives apart from their caregiving.  They can also be attentive and help the caregiver see the early signs of SIM as they appear.  Most importantly, they can be present to the caregiver as a person of value and worth in their own right, apart from their role as caregiver.

How do we avoid the slippery slope of SIM? 

• Listen to and stay engaged with those around you.
• Understand and look for the signs of Self-induced Martyrdom in your caregiving.
• Pay Attention to your reason for being involved in caregiving.  Are you getting more of a “kick” out of your caregiving that the patient or family member?
• Take a break and let someone else step in while you spend some time just being yourself.
• Finally, if you suspect that you are sliding into SIM, find a trusted friend or counselor and talk it over with them.

The Martyr Complex
 
Why Serve Others?
 
Serving Ourselves by Serving Others

​Being a caregiver can fill a life to overflowing.  It offers the caregiver a sense of purpose by giving us a reason to get out of bed each morning.  It affirms the values that tell us that we are people of value.  It allows us to begin to give back for all that we have received.   However, caregivers can become so focused on the care we provide that a strange kind of logic sets in.  Our memory becomes distorted.  Our worldview becomes dangerously narrow.  Our reasoning becomes precariously tilted.  Here are some examples.
 
Believing we are irreplaceable!  After we have settled into a routine of caregiving, we may come to believe that we are essential to the well-being of the one receiving care.  In fact, we may start to believe that we alone are able to care for this person.  No one could do it like we can.  Their lives depend on us, and us alone.
 
Believing we know best!  Once we get to know our patient or family member’s needs, we may feel that we are the “expert” on their care.  We not only know when they are in need, we know what they need.  We may overrule doctor’s orders because the doctor really does not know them as well as we do.  We may start exerting control over the patient of family member because we know more than they know.  We may refuse any help from “outsiders” because they cannot possibly understand the situation better than we do.
 
Linking our Happiness to the Patient’s Outcomes!  As we become more and more involved with the patient or family member we discover that our moods and feelings of self-worth become more and more dependent on how they are doing.  If they take a downturn we begin to experience guilt or shame.  If they perk up, we feel a lift to our step and a sense of accomplishment.  Especially when dealing with older and frail patients or family members, outcomes can be affected by far more than the level or skill of our caregiving.  As with hospice patients, the outcome is not likely to be better health.  The best we can expect is comfort and sometimes the illness makes even that an impossible challenge.
 
Believing that it is all about attitude!  When we are struggling with the caregiving, we often fall back on the “power of positive thinking” to rescue us.  We believe that all it takes is a good attitude.  We repress any negative thoughts and paste a smile on our face to cover the encroaching frustration or sadness.  When the sadness “wins” we blame ourselves and become ashamed of our raw emotions.  We tell ourselves that we should be able to “handle it!”
 
Each of these mental choices we make are based on some very shaky thinking.  They tend to grow out of our insecurities or fears rather than any real understanding of ourselves or the needs of our patient or family member.  Our “need to be needed” can cause us to overestimate our impact and importance.  We may feel threatened by those who are better equipped to provide care.  We may simply be afraid that if we pretend everything is as it should be then nothing bad will really happen.
 
Unfortunately, these errors in thinking can create an underlying sense of guilt and fear of their own.  We are afraid that others will find out the truth.  We are fearful that we will not live up to our expectations of ourselves of those of our patient or family member.  These fears and the ensuing guilt can steal our joy.  They can turn our caregiving into a burden and render us incapable of doing what we most want to do, provide good care to the other person.
 

​Fortunately, we can deal with these choices because they are, in fact, choices we make.  If we use all the information available to us and stay focused on what is truly important, we can avoid wandering into that dark valley.  This happens when we stay present to ourselves and the world around us.
 
Staying present simply means “keeping it real.” 

• Listen through the noise!  There are all kinds of voices shouting at us.  Some come from within ourselves and others are from those around us.  Do not let the noise determine your thinking.  Listen to the facts.  Let the reality of what you know and what you can do guide your thinking.  Avoid overthinking the patient’s needs and respond appropriately.  Filter out the noise and listen to reality.  
• Feel through the weariness!  We often become numb to our weariness.  We discount our being worn out because it can be terribly inconvenient to someone with great responsibilities.  But, we need to be able to feel our weariness and acknowledge the toll it is taking on ourselves and the care we are providing.  When we are tired it is much easier to skip a few steps just to get the job done.  Weariness keeps us from being able to pay attention to the weakness in our wrists or pain in our back.  Choose to feel your weariness and respond accordingly.
• Observe with clean lenses!  How often do you stop and clean your glasses?  If you are like me, it is only when I become aware that they are dirty.  Usually, Marlene notices that they are dirty long before I do and then they get cleaned.  These mental choices are not made in an instant.  They are made incrementally and over time.  We cannot see the changes because they happen slowly.  We grow used to each small change.   But somewhere along the way either we, a friend or family member, or the one we are caring for will notice the changes.   At that point we need to “clean the glasses.”  Take a look at what is happening and get the facts.  A good friend or professional can help you.  But we must choose to get rid of the schmutz if we are to see ourselves more clearly.

 
Self-care of the caregiver’s mind is vital.  By staying present to ourselves and the world around us we can continue to find joy and purpose in our caregiving.  We can continue to sing the old song “He ain’t heavy, he’s my brother…” for as long as we are needed.
 

Self-Deception
 
Signs of Self-Deception
 
Being Present to Ourselves
 

​Caregiving can take a toll on the caregiver.  It requires setting aside our internal anxiety in order to focus on the physical and emotional needs of the loved one or patient.  It can include physically lifting and turning an infirm person to move around. It can cause disruptions with our relationship with those to whom we are providing care as well as with other caregivers engaged with them.  Lastly, we can create so much stress in our lives that we are unable to fight off simple colds or infections, etc.  And, because we are so focused on the other person, we may ignore the toll caregiving is taking on our physical well-being.  This is a very dangerous situation for both the caregiver and the one receiving care. 
 
I had the good fortune to work with many caring professionals during my years as a Hospice Chaplain.  The doctors, nurses, aides, social workers and other chaplains kept an eye on the caregivers as well as the patient.  When we saw signs of compassion fatigue we would begin talking with the caregiver about taking better care of themselves.  We would become coaches, helping the caregiver to see the signs of fatigue and discover ways to deal with it.  This included getting a little help, at least in the short-term, and learning better ways to provide the care their loved one needed.  In extreme situations we would arrange for the caregiver to take a complete break for a few days.
 
Generally, the greatest challenge in coaching the caregiver was breaking through and helping them see how vital self-care was for all involved. If the caregiver that could not see the negative consequences of their caregiving they were unable to change. Many, when they saw, would decide that the consequences were not really serious.  Many of these were able to get through the crisis but would have so compromised their health that when the pressure was off, they became seriously ill.  The key was in helping the caregiver connect the dots between their caregiving and the consequences on their own lives.
 
Just to recap, caregiving can weaken your immunity, strain or tear muscles or tendons, and destroy relationships with others.  Once these things occur, the care suffers and our loved one or patient will be at risk.

• Get the sleep you need.  If you fall asleep during the day or wake up tired, look at your sleep schedule and make adjustments.
• Attend to personal protection and hygiene.  Are gloves and hand washing too much trouble?   Have you skipped your showers and other personal care because you are just too tired?
• Eat well.  Caregivers are notorious for making sure the patient or loved one gets the food they need but will only nibble a bit of this or that because preparing a meal for their needs would be too much.  Snacking on high carb, high fat foods creates lethargy and steals our energy.
• Make time for your family and friends.  Ensure that you stay in contact with your support system.  Cocooning with the patient or family member seldom provides the support the caregiver needs.
• Exercise!  The simple act of taking a walk while the Patient or loved one sleeps can make a huge difference.  Exercise replenishes energy and awakens the immune system.

 
In short, taking care of our physical and social needs while caregiving allows us to sustain the care we provide through the long haul.  It leads to better care for the patient or family member and allows us to experience the joy that comes with being a caregiver to someone we love.
 

Caregiver Self-Care
 
Lowered Immunity and Caregiving
 
The High Cost of Caregiving

For the next few weeks, I will be exploring ways that Caregivers can take care of themselves.  During my years working in hospice, this was one of the major issues we had to address with families.  Many families would ignore their own health and welfare while caring for their mom or dad.
 
Do you remember a picture from a mid-air accident where an engine came apart and the oxygen masks were used by the passengers for the remainder of the flight.  Did you notice anything strange about the picture?  The preflight presentation says that we are to place the mask over our mouth and nose. Everyone had the mask only over their mouths. So much for that preflight presentation.  Unfortunately, there is another part of that presentation that many people do not follow.  “If you are traveling with a child or someone who requires assistance, secure your mask on first, and then assist the other person.”   I wonder how many folks on that flight followed this guideline?
 
Caregiver’s rightly focus their attention on the needs of the one who is suffering.  Over the long-term of providing care, the caregiver learns to ignore their needs.  In doing so we allow the stress of caregiving to gradually erode our health of body-mind-soul.   Airplane’s do not fall out of the sky because a part suddenly broke.   They generally fail because stress has gradually weakened the plane and the part is no longer able to serve its function.  The same happens to caregivers.  Their lack of self-care can make it impossible for them to adequately care for their loved one. 
 
This is called Compassion Fatigue.  Its primary sign is the growing feeling, whether admitted or not, that caring for their loved one is more of a burden than a joy.  A sense of duty replaces the sense of satisfaction that comes with caring for mom or dad.  If unchecked, that resentment and sense of duty can become outright hostility and anger.  It can poison a lifetime of loving memories.  Caregivers may just walk away, never to return.  They may ruin their own health.  They may let their caregiving become less attentive.  More often, however, they may double down and continue providing care while carrying a crushing load of guilt and shame.
 
For the next three weeks I will share ways to act on the “Airline Oxygen Rule” where the first responsibility of the caregiver is to their own self-care.  This is not selfishness.  It is admitting the reality that if we are physically or emotionally incapacitated, our loved one will not have the care they need.   We need to remind ourselves every day that “If you are traveling with a child or someone who requires assistance, secure your mask on first, and then assist the other person.”   

Are You Suffering Compassion Fatigue?
 
The Cost of Caring
 
Compassion Fatigue and Burnout