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Guilt:  The act or state of having done a wrong or committed an offense; culpability, legal or ethical.   1.  Conduct that involves guilt; wrong doing; crime; sin.

Webster's new Universal Dictionary of the English Language

It seems to me that caregivers can’t win no matter what choice in care they make. If they keep their person home they are guilty of martyrism. If they make the nursing home choice and express emotion over having made that decision, they are told not to feel guilty, which in and of itself is an affirmation that guilt must be what they feel. Either way they are guilty of something.

"Don't feel guilty," its like asking someone if they've stopped beating their wife yet.  That phrase seems to spring to the mind of too many who stand on the outskirts of the caregiver's life, as if that is the only explanation for any emotion the caregiver expresses.   'Guilt' is nothing more than another one of those labels/cliches, people impose on caregivers, a quick fix, the imposition of which is really about lack of regard for the caregiving experience.  Personally, I think the word is not only overused it is so glib a comment that it should be eliminated from the counseling language.  its use does little more than shut the door to any significant dialogue.

Caregivers are people who are dealing with regret, feelings of failure, of anger, of grieving.   Caregivers also suffer from a vague indefinable sense of wondering if they could be given more respite, more tools, more encouragement, more help, perhaps they might be able to keep their person home longer. They wrestle with vows and obligations and promises they may not be able to keep. They are painfully aware that care expenses define who can and who cannot afford help at home and for vast numbers the cost of nursing home-care leaves caregivers literally trapped at home regardless of their preference in care.  They live in homes, the structures of which make home-care exceedingly difficult if not impossible. They have family members and friends who have a great deal to say about how they do the job but who also abandon them during their greatest time of need. They are inundated with nothing but negativity and reinforcement of a bias that many just aren’t able to question let alone fight. 

And they also deal with a feeling of relief that is very difficult to admit let alone integrate, a feeling that goes hand in hand with getting a good night’s sleep after making the nursing home choice and knowing they have also begun to say goodbye at the same time.

And for what it is worth, those who make the nursing home decision are far from removed from the continued care of their family members.  In many ways the care becomes more demanding, more involved because it is removed from the home.  

It isn’t as if you just drive them up and drop them off and you are ‘off the hook.’ The investigation that goes into selecting a proper setting, getting a bed, figuring out the financial requirements, seeing that they get the care they need, all of that takes time and energy, and commitment.  Unfortunately, the problems are multi-fold for all families and with all the choices that are made.

Who steps up to take the challenge?  

Who flees?  

Who would like to help but their own family problems get in the way?  

Who is, or isn’t speaking, to which sibling, or parent.  

Who is still dealing with what Dad did twenty years ago? 

And the one who takes on the challenge feels taken advantage of.  

And the ones who doesn't feels a combination of guilt and relief which breeds more guilt, and it must be guilt, because that’s what everyone calls it. 

I offer that these people are in mourning. They are mourning what might have been, what should have been, unresolved differences that are felt to be out of reach now, and they are dealing with their own mortality.  That is what drives this train.  What a demeaning act to tie all that up into three little words: "Don’t feel guilty."

On the other hand, while accusing someone of feeling guilt doesn’t help very much, acknowledging the grieving does. This is something friends, professionals and family members can relate to and help process.  It is time to stop telling us to not feel guilty about choices we don’t want to make even though we may have to make them. 

It is time to throw the word ‘guilt’ out of the jargon and start listening to what caregivers are really groping for, a forum where they can express their frustration, their loss, their grieving, and their anger without fear of reprisal or judgment and where they can expect information, tools and resources instead of myths and clichés.

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