“Let me do it for you, Mary Ann, we are running out of time.”   “I’ll take that to the kitchen for you. ”  “What are you getting up to get?  I’ll get it for you.”

Someone made the comment to me that when Caregiver’s take over full time care of their Loved One, the Loved One’s ability to take care of him/herself tends to decline.  I don’t remember who said it.  I don’t know if the person who said it had any formal knowledge to validate the comment.  I just know that my own experience seems to allow the possibility that the observation was correct.

I feel responsible for Mary Ann’s well-being.  I am taking care of her.  I need to do for her what she cannot do for herself.  I am here to determine what she needs and wants and then see to it that she gets it.  She is virtually helpless to do even the most basic things.  I am her arms and legs.   My job is to figure out what she wants or needs when she is having trouble figuring that out for herself.  She has a right to have the highest quality of life that the Parkinson’s will allow. 

Caregivers are committed to take care of their Loved Ones.  The question is, can they do too much for their Loved Ones and do more harm than good in the process?  In other arenas, the term for helping too much is “enabling.”  Is it possible that in all our good intentions we may very well be doing less good than we thought? 

A less comfortable question is, do we sometimes take over tasks from our Loved Ones more for our own sake than their sake?  Are some of our generous acts of service rooted more in our impatience than their need?

Those are very tough questions quite reluctant to produce easy answers.  Mary Ann would love to be back in the kitchen.  There are knives there, very sharp knives.  The Cutco knives she purchased from a traveling salesman some time before we were married forty-three years ago, have recently been sent back to the company for sharpening.  A broken blade was replaced, as were the handles, and they were honed until razor sharp.   (By the way, all that was done only for the cost of shipping — the salesman was not lying.)  Those knives could cut to the bone in a fraction of a second.  When Mary Ann’s basic Parkinson’s medication kicks in, she has dramatic dyskinetic movements, arms waving around with involuntary muscle activity.  She falls easily.  Armed with knives she could easily do major damage to herself and anyone else within reach.  Hot pans with oil or water in them are equally dangerous in dyskinetic hands. 

The easiest solution is for her not to participate in any way in the food preparation process.  That is pretty much what has come to be.  It is much less stressful for me if she stays in her chair in the living room while I do whatever needs to be done.  That solution is the easiest one for me but not necessarily the best for her.  My need for her safety is one part of this solution, but another part is my seeking to avoid the stress of helping her do whatever part of the preparation process she can, while I am trying to get the rest of the preparation tasks done.  Our solution is easier for me but does not necessarily increase the quality of her life. 

At our last visit to the Cardiologist I asked about an increase in number and intensity of Mary Ann’s episodes of labored breathing.  One part of the answer from the Cardiologist was that her inactivity has diminished her muscle tone. 

Here is the major area of concern from my perspective.  Now that I am retired and at home with her all day long every day, I am right there, every time she stands up to go somewhere.   I ask where she is going and offer to get for her whatever it is she was going to get.   If she gets up to walk when I am not able to see her, when I do see that she is up and on the loose, I move as quickly as I can to offer her an elbow, or put my hand on the gait belt. 

One negative effect of my presence is that her freedom of movement is more limited.  Another negative effect is that she gets less exercise while I am so attentive.  Her muscle tone diminishes and the stress on her artery-blocked heart increases.  It takes less and less activity to trigger the labored breathing. 

The problem for me is that I am the one who picks her up when she falls, and I have seen again and again how close she has come to doing major damage to herself.  She has fallen and cut herself, resulting in a couple of trips to the Emergency Room to check for major damage and stop the bleeding.  I have seen her start to crumple and then lose consciousness for anywhere from a minute or so to ten minutes.  I have hurt my back trying to hold her up or get her up, putting at risk my ability to continue to care for her. 

How much help is too much help?  

Whenever we have any time pressure, or my impatience kicks in, I do little tasks that she might be able to do if she was allowed to do them at her pace rather than mine. 

When is the help actually more for the sake of the Caregiver than the one receiving the care?

Sometimes I am so available, that rather than doing a task herself, a task she could do, she lets me, asks me to do it.

When is help no longer help, but enabling behavior that slowly takes away the ability to do the task from the one for whom you are caring?

Caregivers can care too much.   We can do too much.  We can indulge our own impatience and steal abilities from the one we love. 

The challenge is to find the location of the place in between too much help and too little help.  If nothing else, asking the question, “Should I do it or let her do it,” allows the possibility of finding that place.

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