Caregiver Guilt

January 21, 2011

Was there ever a more dedicated, yet guilt-filled lot than caregivers?  On the one hand, you feel guilty for not spending more time with your loved one with dementia, so you spend more time with her.  Then, you feel guilty because you are neglecting your family, so you increase the time with them.  The cycle begins again.  Other common guilt triggers:  placing your loved one in an in-patient facility, placing your loved one in your home, taking over daily tasks from your loved one, leaving your loved one daily tasks that frustrate and depress them, going behind your loved one’s back to do things that must be done, confronting your loved one about things that must be done only have have them argue angrily with you….

The list goes on.   The common thread here is that caregivers can’t win for losing.  They second guess themselves and undervalue the gift they are giving their loved one at every turn.

First of all, value your gift.  You are giving the best you can to your loved one.  You’re not the perfect caregiver, but then, no one is.  Give as much grace to yourself as your would someone else in the same situation.

Realize that you have to take care of yourself to be an effective caregiver.  If you are always giving to your loved one with dementia and to your family, you will have nothing left for yourself and you will burn out.  Caregiving is a marathon, not a sprint.

Understand that you will make decisions you said you’d never make.  “I promised Mama I would never put her in a nursing home,” or “I promised Daddy I would never lie to him,” or “I promised my husband he could die at home.”  These and a thousand other promises were made when you were not in the real situation, faced with real choices.  Do your best to keep your promises, but realize that life may interfere and you may be forced to make other choices for the good of everyone concerned, not just your loved one with dementia.

Stop comparing yourself to others.  “Sue kept her mother at home for 10 years.  How can I even think of putting my father in a nursing home after only a month?!!”  Your situation is not the same as the other caregiver’s.  Your loved one with dementia has different needs and causes different problems than the other caregiver’s.  Furthermore, your circumstances are different.  Make decisions based on what is best for you, your family and your loved one, not based on what another caregiver chose to do.

“Lily has done so much for me and cared for me after my surgery.  I should be able to drop everything and care for her!”  No, you should not.  You should do whatever your circumstances reasonably allow to help Lily, but there is no great scorekeeper in the sky who keeps up with the points Lily has amassed vs. you as her caregiver.

A word about lying:  This gives all of us great pause, as most of us strive to be truthful people, and it causes tremendous guilt.  There are situations with dementia where you should choose to lie FOR THE GOOD of the patient.  Those with dementia cannot come into your world, so you must enter theirs.  For instance, a very upset dementia patient in a nursing home called the nurse to report a cat under her bed which had birthed kittens.  The nurse, of course, saw no cat or kittens under the bed.  However, the nurse wisely told the patient that she would take the cat and kittens out of the room and find them a good home.  The nurse calmly bent underneath the bed, gathered up the imaginary feline family, and took them out of the room.  The patient was relieved and happy, rather than upset and argumentative as she would have been if the nurse had tried to contradict her.  There are a million situations like this, most of which do not involve hallucinations.  Just as when you have an imaginary tea party with imaginary cups and tea, you are not lying to the child.  You are entering her world.  You must do the same with the dementia patient.

Forgive yourself.  Love yourself.  Have faith in yourself.

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One Response to “Caregiver Guilt”

  1. Tony Sexton says:

    Thank you Ellen for your much needed articles, have enjoyed reading through them this morning!

    -tony sexton

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