As I traveled in the car coming back from my Renewal Retreat, I thought about how the transition back to my role as the full time Caregiver would go.  Having done retreats before, I knew that once I was in the door, there would be little chance to ease back into the demands.   Having realistic expectations about the transition back to Caregiving duties has helped me very much in the last years. 

It is actually unreasonable to expect the person who has been left at home to be anxious to celebrate the wonderful experience you have had away from him/her.  As Caregivers it is important for us to try to put ourselves in the place of our Carereceiver who does not have the luxury of going on a retreat and enjoying some solitude, doing things for the sake of renewal, things they can no longer do. 

Sometimes the very things we do to help maintain our equilibrium so that we can continue to be good Caregivers make our Loved One’s jealous.  How could it be otherwise.  We are the people closest to them.  We are the ones they depend on for all their needs.  They would love to be able to take care of themselves.  They would love to take some time to do the things that used to bring them joy.  They would love to get away on their own just to enjoy themselves.  They can’t any longer.  Our freedom, however limited we may feel it to be, can be for them a painful reminder of the freedom they have lost. 

As a result, sometimes Caregivers don’t hear the words of appreciation for all they do, words they would like to hear.  Sometimes Caregivers receive some passive aggressive indications that they are not appreciated.  Sometimes Caregivers feel as if their Loved Ones resent them instead of appreciate them.  Sometimes they do resent us, whether it is fair or not for them to do so.

I have taken over the kitchen duties from Mary Ann.  Her way of responding if anyone asks about cooking is to say, “Theywon’t let me in the kitchen any more.”  She says it with a tone that sounds blaming.  It is the way she expresses her frustration that she has lost one of her most meaningful activities, one from which she got lots a positive feedback and satisfaction.

When the Grandchilren come and visit, there are hugs and kisses for both Grandma and Grandpa, but I am the one who can respond to the Grandchilren, who can talk with them and read to them and play with them.  The attention they give me is hard for Mary Ann to see.  It is another reminder to her of what she has lost. 

When people visit for any reason, her words are few or barely audible due to the progression of the Parkinson’s Disease.  I am the one who engages in conversation.  She has always been the entertaining one who had the smart-aleck comments to make.   She still has that wicked sense of humor and will get you when you least expect it.  Those who know her well still enjoy her sense of humor.  Now, her thoughts don’t always translate into audible words quickly enough to keep up with many conversations.   Of course, she gets frustrated and a little jealous.   

Caregivers are the ones who are the most accessible when Carereceivers need to vent their frustrations.  Their limitations are highlighted by anything we do, especially anything that was in their territory before the chronic illness took its toll. 

We feel hurt that we are doing so much for them but are not appreciated adequately for it.   One of the tasks that comes with caring for someone we love is to allow them to express their frustration, yes, even at us.  We are only human, so it does hurt when it happens.  The real culprit here is the chronic disease, in our case, the Parkinson’s.  While resentment and hurt feelings are a part of the Caregiver/Carereceiver relationship, it is the third member of the relationship, the chronic disease that is the source of the frustrations. 

In our best moments, we can talk about the frustrations and the jealousies and the hurt feelings and the lost freedoms.  My goal in keeping my equilibrium in the face of what the Parkinson’s has tried to steal from us is to match expectations with reality.  If I am constantly expecting Mary Ann to behave in a way that caresses my ego as a noble Caregiver, when she does not, my feelings are hurt, I am disappointed, and even more frustrated by all the difficult tasks associated with that Caregiving.  When I remember what has been taken from her, how hard it is for her to accept that she cannot do almost all of the things that formerly brought her satisfaction, when I remember what she has lost, it is easier to accept the times her frustrations come my way. 

It isn’t fair, it is just what it is.   Yes, there are sometimes hurt feelings and misplaced frustrations.  It comes with the territory.   The goal is to recognize the real culprit and refuse to allow that culprit to damage our relationship.

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