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DEADLY MISCONCEPTIONS ABOUT CAREGIVING

• Once you have made a commitment to care for a loved one, the commitment is forever.
• The needs of the dependent spouse are more important than the needs of the caregiver.
• The dependent person’s needs and wants are equally important.
• It is always inappropriate to say “no” to requests of an ill spouse.
• For better or worse, in sickness and in health…” means exactly what it says.
• There is something noble about sacrificing your life for a spouse.
• Love is forever.
• God never gives you more than you can handle.

     There is an important theme running through each of these clichés, social rules, myths, and proverbs.  They represent a kind of propaganda initiated, perhaps, by insecure people who want ironclad guarantees, that if they become sick or disabled, their partner will be required by these social rules to stick around.  The primary club they wield through these rules is Guilt, the tool used to bind them to their partner.  If their caregivers so much as fantasize about walking away from their caregiving responsibilities, guilt will keep them there.

     Caregivers often live by a set of rules that are based on these deadly misconceptions and other myths involving unrealistic social expectations.  In the end, trying to live by these misconceptions empowers no one, and harms everyone.  People who are not caregivers to a dependent spouse perpetuate societal expectations.  They are not the ones who are beckoned into service with a bell or a yell.   Some of us have even been sarcastically told, “Oh, don’t be a martyr” when we dared to share information about our lives and frustrations in our attempt to educate others on what spousal caregiving entails.   People are dismayed at the unpleasant details that are the daily reality for any caregiver.

     This kind of disbelief is especially obvious from those who are most influenced by the unshakable belief that any marriage is forever, that “what God has wrought let no man put asunder.”  For non-caregivers with this opinion, it is unthinkable to question one’s commitment to a spouse.  These same people unfamiliar with spousal caregiving tend to personalize the situation by wondering what would happen to their own partners' resolve if they got sick.  Sadly, the truth is that some spousal caregivers are forced to make choices they could never have anticipated until it is a personal journey. 

     For some caregivers, the only strength they hold onto is the Deadly Misconception:  “God never gives you more than you can handle.” While there is no intent to challenge belief systems, there is a deeper issue embedded in this kind of statement.  Your beliefs may be the only source of comfort you have.  No matter what your religious beliefs happen to be, this statement amounts to a commentary on human resilience.  It amounts to reassurance to caregivers that they will “make out just fine.”  Or, “I know you will bounce back,” or “we all have these crosses to bear in life.”  

     The truth is, for caregivers of chronically ill or disabled spouses, things are not going to be just fine.  It does feel like life is too strenuous.   There are financial hardships, intimacy problems, unmet needs, and a rising level of exasperation and anger that is real and potentially deadly.   To be sure, there is a whole list of psychological needs that go unmet.  To make matters even worse, caregivers in this situation are often so tired of medical waiting rooms that they will not see their own doctor when they should.  It is not uncommon for the caregiver’s physical health to deteriorate for this reason alone. There is no cure, and the exhausted caregiver is waiting for one of them to die for pain relief.   Unless the caregiver decides to make some radical changes in the nature of the caregiver relationship, there is no comfort in the saying “God is not going to give you more than you can handle.”   How to make those changes is spelled out in our new book, The Tough & Tender Caregiver, A Manual for the Well Spouse.