The Caregiver Calling

I don’t know.  I don’t know whether we are in a time of decline.  It is beginning to seem that way.  I just don’t know.

We had a good day and a difficult day all at the same time.  It was a good day because we got to see our Granddaughter sing in a choir concert this afternoon.  She sang wonderfully — something very important to this Grandpa whose life revolved around singing in earlier years.  Grandma got to be there too.  Both Grandma and Grandpa got good hugs today. 

Mary Ann slept a little later than usual.  She spent a couple of hours with one of the Volunteers from Church.  While I was away from the house during that time, reading, thinking and watching for birds at a nearby lake, it appeared that the time went well at home.  Mary Ann and her Volunteer Visitors seem to enjoy each others’ company.  Today, the Volunteer read to her from a novel they have been working on together.   She had with her the ingredients for a very tasty Asparagus Quiche.  We thoroughly enjoyed having a piece of that for lunch before leaving for the concert about an hour away. 

We enjoyed the concert, the music was well chosen and very well-performed.  The Children’s Choir of which our Granddaughter is a member sang first, and a choir of high school-aged girls sang some very interesting and unusual pieces.  All the music was very engaging and entertaining.

Afterward our Son and Daughter-in-Law treated her parents and us to dinner at a Cheesecake Factory restaurant.  It was an early Mother’s Day present for the two Grandmas. 

We went to out kids’ house for a while afterward and then headed home.  When we got home Mary Ann and I both had a little bit to eat since we the meal out was in the mid-afternoon.  Mary Ann struggled a bit with the food.  She started doing something she has done on occasion in the past.  She started what appeared to be cleaning her fork in her ice water.  She did it with the for she used for some pieces of meat.  Then she did it again with the spoon she used when eating some of her favorite jello (Seafoam Salad, if I remember the name correctly).   I asked her why she was doing that.  She said she was eating the ice.  It seemed that she was saying that to cover the fact that she really didn’t know why she was doing it. 

Later, she was washing her hands and spread some suds on her forearm.  I asked her if there was something there that needed washing.  She answered that there was not, but that her mind had told her to do it. 

She seemed to me to be a bit disconnected during the afternoon.  Since we returned from the last trip away from home, she has seemed to be confused at times, and she has slept during the day more often than has been so in the past.  She has struggled more with hallucinations. 

The confusion for me is that there is no way to know if what I am observing is really a decline, or just a cluster of glitches that will eventually pass.  We have experienced declines that have lasted, and we have experienced changes that came and then left after a time.   I may be reading too much into some minor miscues. 

Tomorrow, Mary Ann will have a small Basal Cell skin Cancer removed.  She has been through this before.  The word Cancer scares her.  The Dermatologist and I have both explained that this particular kind of Cancer is very treatable and not at all dangerous when removed at this stage.  She has still voiced deep concern. 

How she responds to this procedure will reveal more about whether she is in a lasting decline or just a temporary move. 

Caregivers are often confused by circumstances such as these.  We just don’t know what is happening.  The challenge for us is to deal with the feelings associated with a change.  If we work through the process of grieving the loss of one level of functionality and alertness, we are vulnerable to more confusion if there is improvement.  Then comes another round of grief if the decline comes again. 

Over the years I have observed an odd response especially in the close family members of someone who has come to death’s door on account of an acute Cancer.  If the person rallies and regains strength, there are sometimes feelings of resentment and frustration in those who have been a part of the journey.  It is as if they have gotten down the path toward acceptance only to be forced to backtrack to an earlier place. 

The result of traveling back and forth in the grieving and acceptance process is sometimes a sort of numbness that sets in.  People are afraid to let themselves feel much at all.  They have felt sad, only to be jerked out of that mode by their Loved One rallying. They have celebrated improvement and become hopeful for continued better days, only to have their hopes dashed by the next relapse.  I have heard people talk about feeling angry at the person who is sick when they have rallied again and again after being at death’s door. 

It is an odd response.  It is embarrassing.  People don’t want to admit to those feelings.  In my role as a safe person to talk with, a person who is bound by a vow never to share what is told in the context of confession, I have heard people admit to feeling angry when their Loved One has rallied. 

Caregivers have all those feelings as the roller coaster climbs high, only to plunge again. 

Tomorrow morning may bring change for the better.  It may not.  Tuesday morning may bring change for the better.  It may not.  The same goes for Wednesday, Thursday, Friday, Saturday and next Sunday — and every day after that. 

I am grateful to have a Source of strength that provides a sort of beacon as this journey moves in fits and starts, steps forward and steps back.   Each of us needs some place to turn for internal strength.  Whether it is rooted in a particular spirituality or in our basic humanity, strength is needed as Caregivers negotiate their confusion. 

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

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.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

Yes!!  As the world gets smaller for those of us who must spend most of our time at home, the television becomes a very powerful presence in our lives.

The television has always been an important part of Mary Ann’s day.  Most days it is turned on when she gets up, and the one in the bedroom is still on when she goes to sleep.  An odd little piece of Mary Ann’s history seems to me to play into the role television has for Mary Ann.  Her mother turned the radio on in the morning when she got up, and it stayed on all day. It was company for her.

One of the things that scared me most about the prospect of retiring for full time Caregiving was the prospect of never being able to get away from the television.  We live in a town home with 1150 square feet on the main floor.  There is nowhere to hide.  Even when I go to the front room that serves as my home office and close the door, I have to turn on the monitor so that I can hear her if she needs my help.  The sound of the television follows me everywhere.

The problem is complicated by the fact that I am easily distracted.  I can’t read or do anything taking much mental effort while the dialog of a television program is audible.  Gratefully, I am able to focus on writing a blog post that is meaningful to me while the volume on the monitor is fairly low.  Unfortunately, the result of the low volume is that sometimes it is the thump of her falling in the bedroom that gets my attention and sends me running to help.

One of my most hated jobs has emerged as Mary Ann’s dexterity has diminished.  We are on our fourth or fifth remote control trying to find one that Mary Ann can still manage. I am now called on (I usually offer) to use the remote for her to try to find something she will settle on.  Without fail, we end up in what I call commercial hell.  There are commercials on every channel, lasting an eternity, one after another as we try to discover what the program is, let alone if it is something she wants to watch.  After making it through all fifty (or whatever the number is) channels, often there is nothing that has caught her fancy, so we start over.

How is the television Friend?  For someone who can no longer do any of the things that brought her joy, the television is a profound blessing.  Mary Ann can no longer quilt, or write notes to people, or read books or do wash or cook or clean or go to a job outside the home, or go outdoors and mess with the flowers or make herself a sandwich.  The television provides stimulation as she watches programs that interest her.

A benefit for me is that when she is engaged in a television program she is enjoying, I have time to do something else with less vulnerability to interruption.  I can step to the front room and sit at the computer.  I can make a phone call.  I can walk outside the house for a moment.

Let me make an admission that is embarrassing to a guy who grew up in the time when “a man’s home was his castle.”  Mary Ann runs the remote.  She always has.  In our house, I knew it, the kids knew it, the grandchildren now know it, Mary Ann is the boss of the television.  I suspect that admission will void any gift cards to Home Depot, Lowe’s, or Ace Hardware (except to buy flowers).  (I still refuse to enter a fabric store unless it is an emergency.)

The result of what I have just shared is that not only is the television on all day, but the programs on it are of Mary Ann’s choosing.  It is no wonder that whenever there is a volunteer at the house, I tend to seek quiet, secluded spots to look for birds and other wildlife, or just soak in the scenery.

How is the television Foe?  While it is a blessing to her in an important way, it is a curse at the same time.  As I have already said, it is oppressive to me that to have no little respite from it.  I could probably recite the dialog on most of the Doctor House episodes, the episodes of NCIS and most of the Law and Order series.  I have come to loathe the Saturday Spaghetti Westerns.

My understanding is that there is evidence that what is taken in, especially just before going to bed can have impact on a person’s feelings and general world view. I do not know that to be so.  I may have misunderstood or confused what has been said about that.  I do know that watching the horrible things people can do to one another portrayed in graphic detail in words and visuals is depressing to me.

There are some in the online group of spouses of those suffering from Lewy Body Dementia who have talked about the impact of television.  Some have said that their spouses become agitated with certain programs.  One mentioned that sitcoms seemed to be less troublesome for her Loved One.

What streams before the eyes on a constant basis has to have some effect on how a person feels, how he/she views the world.  When I was serving a the Pastor of a congregation in Oklahoma City, a very active, long term member of the congregation was killed in the bombing of the Murrah building there.  Her name was Lee.  As we gathered with her husband, Roy, at their house, waiting for news of her fate, I remember the role of the television.  We all had our eyes glued to it, we hung on every word the reporters and announcers spoke.

The most freeing piece of information came to Roy through a phone call from the HUD representative.  Lee worked in the HUD office.  The information was the assurance that any news of Lee’s fate would come first via phone to Roy, before it would be announced on television.  Roy and those gathered with him no longer had to remain glued to the television.

It didn’t take me long in that situation to realize that the television reporting hour by hour, day by day, could create a terrifying view of reality in the minds of those who were homebound, for whom the television was a constant companion.  I asked folks in the congregation to phone homebound friends and neighbors to reassure them.

The solution seemed to me to be getting the homebound out of the house, even if it was just to stand outside and look around.  Then they could see with their very own eyes that reality had not been shattered completely.  The houses around them were still there.  The sidewalks and streets, the trees and flowers and birds and squirrels were still as they had been.

For the most part what is seen on television is not real.  Reality television programs have been set up for their entertainment value — they are not real.  Even the news is a gathering of sensational stories framed in ways that are as dramatic as possible to keep viewers coming back to that station.  The antidote to what is not real is what is real.

It is important to get away from the television and find a way to interact with live people.   The people on television are acting, pretending, entertaining.  The troubled economy is real, the swine flu is real, but the world has not crumbled into useless rubble.  Interacting with real people allows the possibility of making good decisions about doing what you can actually do to help protect your savings or increase the chances of your avoiding catching the flu.

Used appropriately, television can be a helpful tool in caring for someone whose life has been drastically altered by a debilitating disease.  It is a tool like a knife.  It is very useful, but also dangerous.  As a window through which reality is experienced, it can increase the fears of someone who is already afraid of what is coming due to their disease.  It needs not to be the only window.

For some whose Loved Ones are no longer able to get out at all, or are overstimulated by going out in public, finding music to listen to, television programs that lift their spirits, reading to them, singing to them or with them, reminiscing about times gone by with them (or to them if they are no longer verbal), inviting an old friend over, offer some options that might work with them.

Yes, the television is friend and foe.  It is not a healthy substitute for reality, real people, real relationships.  It is a tool that needs to be used carefully.

Now I need to go and find out if Tony and Agent David have traced down the information Gibbs needs to solve the murders.  (I already know, I have seen it at least twelve times!)

P.S. In case you are wondering what a fabric store emergency might be, it is this: you take your suit coat to a sewing shop to have a button sewn on only to be sent to the fabric store to find replacements that match, since you lost the button that came off.  It was a terrifying experience!  It is a wonder that I lived to tell about it!

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.