In an earlier post, I reflected on the value of some of the chores I do, cleaning the commode, making the beds, doing the little daily tasks.  They give me the feeling that I have a little bit of control in circumstances that are mostly out of my control.

I want to take the matter of routine farther in measuring its importance to the long term health of both Caregiver and Carereceiver.  I have not studied brain science enough to speak with authority on this, but there are some obvious elements of our complex brain activity that I would call “automatic pilot.”

When Mary Ann and I were dating, I would occasionally drive home from her house fairly late at night.  Maybe it was more than occasionally.  Maybe it was most times I saw her those summers together when I was not away at school.  Maybe it was more than fairly late — could have been very late.  I am the last of five children (there would have been seven, but two who would have been oldest died very early in their lives).  My parents were pretty mellow by the time I came along.  Yes, I was the baby in the family.  No I was not spoiled — maybe a little. My adolescent years did not include battles with my parents.  Open rebellion is not one of my gifts.

While my parents and I got along well, the late arrivals home from Mary Ann’s place set Dad off.  He was not pleased, to put it mildly.  Mary Ann and I just had a lot to talk about!  Since my parents had moved to a place in the country when Dad retired, it was a twenty mile trip home from Mary Ann’s folks’ place on a two lane blacktop.  There was an S curve that demanded slowing down to about 35 mph to negotiate safely.  On more than one occasion, I can remember coming to an awareness that I was past the S curve with no conscious memory of having slowed down and driven through it.  That is automatic pilot.

For me auto pilot is that part of my brain that functions without my need to consciously reason out what I am doing one step at a time.  That is where resides all the things I can do without thinking.

In my world, as small as it has come to be, there are rituals and habits and routines that not only order our day but help keep us safe and get things done that would seldom get done without the ritual.

There is a habit that I have developed to protect against Mary Ann trying to get out of the wheel chair or sit down in it while the brakes are off.  Doing so could easily result in injury as the chair rolled out from under her.  Whether it is the transfer chair or the wheel chair, any time I move it when it is empty, I leave the brakes on and just lift the back wheels, rolling it on the front wheels only.  The only time I take the brakes off is when she is seated securely in the chair.  The reason for such a ritual is that otherwise I would not remember each time to set the brakes before she gets in the chair.  The habit is a way to deal with my forgetfulness.

I line up the meds in a certain way (that Mary Ann developed) and follow a ritualized pattern to make sure that all the pills get in the right space.  I close the gate at the top of the stairs to the lower level whether Mary Ann is up and about or not, so that it won’t be open should she end up at the top of the stairs while dyskinetic or having an episode of fainting.

I have tried to reinforce habits in Mary Ann that help make my job easier and help keep her safe.  I have to admit I have been an abysmal failure at trying to build those routines and habits and rituals.  Her automatic pilot seems to have already reached capacity.  I seem unable to eliminate ones that are frustrating to me or seem unsafe, and I am equally incapable of adding new ones into her auto pilot that make my job easier or seem safer. Her automatic pilot developed long before the symptoms of Parkinson’s effected her mobility and dexterity and balance.  My hope has been to help create rituals and habits and routines that will help make life easier when the time comes that most of her actions will emerge from the auto pilot and few will be controlled by the Cerebral Cortex, the conscious, reasoning part of her brain.  There are some habits that seem to be developing but only a few.

I made a discovery tonight as I was thinking about this and reading an article I found on the International Brain Injury Association website on the importance of rituals.  I have been looking at this from the perspective of a Caregiver, seeking to manipulate rituals and habits and routines to serve my need for safety and ease in doing the care.

The article affirms the power of positive rituals to raise the quality of life in the brain injured.  I am applying this to those who are suffering from Dementia and losing themselves in the process.  Here is a quotation from the article titled “Overcoming Anomy: The impact of Positive Rituals on Quality of Life,” written by Dr. Thomas E. Pomeranz. “Each of these events (rituals) as well as the many hundreds of others which follow throughout the course of everyone’s day is uniquely ‘you.’  I actively choose my rituals as they evolve and develop over time — the evolution of my rituals is an ongoing process.  These rituals provide me with a sense of security, predictablility and continuity in my life.  How unsettling and tragic it would be if all my quirky mealtime rituals, like salting everything before tasting, using a teaspoon to eat my soup etc. were prohibited.”

Anomy is losing one’s identity, sense of purpose, becoming diminished in value.  The article observes that when the brain injured are trained in Occupational Therapy to change their habits and rituals, it fosters anomy, which them sometimes increases their acting out in frustration.  Pomeranz uses the term “nosocomial behaviors,” negative results from treatments intended for healing.

What that means to me is that by trying to change Mary Ann’s automatic pilot, I may very well be diminishing her, resulting in her resistant behavior.  She is just holding out for her identity.  My need for her to do things in a way that I recognize to be safer or that make my job easier may not help as much as they lessen her.  Maybe it isn’t safe for her to jump up and get her brush to run through her hair, but that is what she does, without thinking of the potential for falling.  Her automatic pilot from before the Parkinson’s guiding her actions.  My scolding her and insisting that I do it for her may make her safer and me less fearful, but something may very well be lost in the process.

Just as my rituals and routines help me order the corner of the world in which I live, Mary Ann’s rituals and routines and habits help define her as an individual.  My role as a Caregiver becomes more a task of accepting who she is and what she does even when it is neither safe nor convenient.  Rather than trying to change her, the precious little time and energy we have need to be spent looking for ways to be safe and function effectively in spite of those habits.  This part of the job of Caregiving will become harder as the Dementia increases.  A number of those who are much farther along in this journey have recently been reflecting on the need to come to acceptance as they deal with frustrating behaviors in their Loved Ones.  When finally acceptance comes, they are free to use all their energy finding solutions to each problem as it arises.

Both Caregivers and Care Receivers need rituals and habits and routines.  Caregivers need them to help maintain some control in their world, to keep themselves and their Loved Ones safe, and to make their life and the caregiving a little easier.  Care Recievers need rituals to keep from being diminished and losing their identity, so that they can sustain their identity, their individuality and their sense of security for as long as possible.

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