Yes!!!

In yesterday’s post, I said this one was coming.  I have been thinking about it for a long time.  Those of us who have full responsiblity for another human being suffer from feelings of guilt.  We just do — and yes, sometimes we actually are guilty and sometimes we are not guilty. 

There is nothing in particular that triggered my thinking about this today.  It was a long and somewhat frustrating day.  The morning routine went fine, the one through which I declare that there is some shred of control left in our lives in spite of Parkinson’s Disease joining the family twenty-two years ago.  Then some repair work that was to be done at our house was sabotaged by the carelessness of the vendor’s service manager.   The resolution of that problem is not yet in sight. 

After that start to the day, my list, the list by which I seek to create some order out of our chaos simply didn’t accomplish its task.   It did not order my day.  I didn’t do it, much of any of it.  I looked at it often.  I did some self-talk trying to encourage doing enough to check off an item or two.  It just didn’t work — I just didn’t work.

One thing that did take control of the day was the activity of the alimentary canal of the one for whom I care, about whom I care.  She was up and down, in need of an elbow to steady her, or a task to be done throughout the day.  There were anywhere from moments to minutes between the needs — no more than minutes. 

With that said, I could have, should have accomplished more. 

The guilt that is part of a Caregiver’s world is a constant presence.  It does not really have to do with how good the care is, how well the Caregiver does at responding to the needs of the one for whom they are caring.  In fact, the better the care that is given, the greater the opportunity to feel guilty. 

Caregivers feel guilty for not doing enough, not doing all that they should do as well as they should do it.  The harder they try to be the perfect, nurturing, loving, kind, thoughtful, capable Caregiver, the farther behind that goal they fall.  

The problem is obvious.  There is more that should be done than can be done by any one human being!  There are no boundaries around all that should be done to help your Loved One have all that she/he needs to have the life she/he deserves.  It is impossible.  The Disease has joined the family.  Caregivers can’t fix that.  Mary Ann has Parkinson’s.  I can’t change that.  I cannot give her back the life she deserves.

Why do Caregivers then feel guilty?  Mary Ann has been to Physical Therapy, Occupational Therapy and Speech Therapy.  We have pages of exercises she should be doing.  There are games that should be played to keep her mind stimulated.  I should get her out more, find entertaining activities to keep her from being bored.  I should learn how to cook three good meals a day that are tasty and pleasing to her palate. 

Why do Caregiver’s feel guilty?  We aren’t always nice!  I get irritated!  I get irritated when she falls after making the same frustrating choice that has resulted in a fall hundreds of times  before (literally, in twenty-two years).  She doesn’t want to fall.  She has Parkinson’s Disease and Orthostatic Hypotension and the side effects of medicines, but she still wants and needs to get up and move.  I get angry at her when the Parkinson’s deserves the anger. 

Why do Caregivers feel guilty?  Yes I love her and am completely committed to her care, but I don’t like having my biggest needs trumped by her tiniest needs.  I am well.   She is sick.  I shouldn’t resent her for something she can’t control.   The truth be known, she is no more perfect than I am.  Because she has Parkinson’s does not make the things that used to be irritating any less irritating now.  I am hardly sweet and wonderful.  I am also just as irritating and frustrating to live with as ever.

It seems to me that one challenge for Caregivers is to separate the things of which we are guilty from the things of which we are not guilty. 

We are not guilty!  We cannot do all the things we should do.  That means we will not be doing a whole list of things we should be doing.  Every helpful suggestion for what we should be doing just moves the already impossible goal farther away.  Caregivers need to come to terms with a simple reality.  We are just people.  We have a life too.  It is actually healthy for us to set limits on how much we do so that we can continue to give good care. This is a marathon, not a sprint.   We cannot make up for all that the chronic illness has taken away from our Loved One.  We will soon become completely disabled if we try.  Feeling guilty about what we cannot actually accomplish is a waste of precious energy and a weight on our spirit that can’t be carried for long without breaking that spirit. 

We are guilty.  We actually do say things we should not have said.  We do blame our Loved Ones for things over which they have little or no control.  We really are imperfect.  We do fail to do things that we could have done to make a real difference.  We take out on our Loved Ones our frustrations with the Disease by our tone of voice or our unresponsiveness or whatever subtle tools we use to punish them.  It does us no good to do all sorts of mental gymnastics to try to justify our behavior.  It is a waste of time.  We are guilty! 

What can we do with the guilt we deserve?  We can’t undo what we have done that we should not have done, or not done that we should have done.  For some of us there lies within our spirituality the freedom to admit our guilt, face it boldly. without fear, and refuse to be disabled by it.  The kernal of truth that lies in the very center of the spiritual tradition that nourishes me is that the One who chooses that I exist, loves me unconditionally with love more powerful than all the things for which I rightly feel guilty.  That love is not weak and shallow and without consequences.  It is easy to feel guilty.  We can wallow in it, get depressed on account of it, and give up trying.  Unconditional love, mercy, forgiveness is much harder.  It implies the possibility of change.   It offers the freedom to change.  It removes the excuses we use to avoid growing. 

For those who do not have a particular spirituality or do not understand there to be a spiritual dimension to life, the issue is the same.  Feeling guilty is still a waste of time.  Naming the things we have done that are actually wrong, harmful, destructive is a healthy first step.  Our primitive brain elicits words and behaviors that frustrate our humanity.  We need to face that before we can choose behavior that nurtures our humanity.  The task is to identify and accept the truth about ourselves and choose behavior that allows us to grow and change and become more than we have been. 

However we define the nature of our humanity, whether in spiritual terms or otherwise, we can find meaning in our caregiving, nurture our humanity, grow in our ability to live full and complete lives even in the company of a chronic illness that seems to be hell-bent on destroying us and our Loved Ones. 

Caregivers, are we guilty or not guilty?  Yes!!!  With that clear, let’s get on with it.  We have things to do!

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