Majority’s Rules

“Whenever you find yourself on the side of the majority, it is time to pause and reflect.”
—Mark Twain
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Our old buddy, Mr. Twain, makes a valid point. And in my humble opinion, ain’t nothin’ wrong with taking the road less traveled or marching to the beat of your own drum. And I know of no place on earth where is it written in stone that the majority rules the waves.

Yet I am by no means discounting the level of comfort that comes with the knowledge that other folks share our opinions. Or that they have had the same experiences. Sometimes being in a majority can ease our minds and boost our spirits.

I believe the answer lies with knowing when we should break out of our comfort zones and step outside of our proverbial boxes to take a walk on our own path. And this is a lesson my mother has been teaching me all my life. Mostly by example, in the way she has lived hers.

At 94-and-a-half years young, my mother is still marching to the beat of her own drum. She is an intelligent gal. Independent and spirited. Warm-hearted and giving. And her age has never had an affect on these traits. On the contrary. All her life she has set the example that it is your attitude which counts, and not your number.

Yet the rules governing the majority can sneak into our daily lives and have impact when we least expect them, or wish for them. In my mother’s case, it is her declining physical and mental ability because of her advanced years that is robbing her of a quality of life that should be hers, by her right and by her choice.

But she can’t make that choice, no matter how much she wants to. She can’t fight a body that is failing her and a mind riddled with dementia. She can’t break out of her box.

But she has bucked a lot of trends. She is 94. Excuse me…94-and-a-half. Which exceeds most life expectancy/actuarial tables. And while she needs to use a walker now to get around, she is not in a wheelchair. And while her short-term memory has tanked, her spirit remains strong. And while many of the people of her “Great Generation” have since passed away, she keeps on keeping on.

She has to play by Majority’s Rules because she is elderly and her body and her mind are failing her. But she can still choose to live her life on her own terms. She has chosen to keep living, and not give up. She has chosen to greet everyone she meets with a bright smile and a sparkle in her eyes. She has chosen to exude love and happiness rather than indifference and bitterness.

She is taking Majority’s Rules and tossing them out the window. She has paused and reflected and decided that as long as she is able, she will take the road less traveled. She will march to the beat of her own drum. And she will do so until, as she often says, her good lord calls her home.

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Reboot

“You will never be handed anything in life you cannot handle.” I believe these words of wisdom to be true. With the caveat, “Even though you may not think so at the time.”

And as my responsibilities for the care of my elderly mother continue to evolve, I have discovered I need to remind myself of this philosophy from time to time, caveat included. Most recently when I took my mother for her quarterly visit with her family physician.

The good news is that the results of my mother’s blood work showed all positive numbers. And physically she is doing as well as could be expected at 94-years-young. The hiccup came when the doctor pinged the status of her mental health, most specifically the decline in her short term memory.

When the doctor asked if she was experiencing any frustration or anxiety when she could not remember things, she replied she was noticing a lack of patience on her part recently. When the doctor asked her to give him an example, she was not able to reply immediately and instead, remained frozen in confusion.

I watched as both of my mother’s eyes looked to the left, then blinked, then looked to the right. She repeated this pattern a half a dozen times. She was trying to find the information in order to respond to the doctor’s question, but had no idea where to look for the answer. She was like a computer whose hard drive was ready to crash; it’s spinning wheel icon locked; frozen, not knowing where to find its system to reboot.

It was frightening to see the totally blank look on her face, with no recognition or ability to respond.

When prompted again by the doctor, she did manage to say she believed she had recently had lost patience with some situation, but could not recall what it was. She was waiting, she thought. For something rather than someone, she thought. And got annoyed when whatever she was waiting for was not happening right away.

This was the first time my mother had exhibited this type of behavior at this higher level during a visit with the doctor. I had seen snippets of this pattern before, but never this severe. It shook me to my core.

For a woman as intelligent and as independent as my mother, I know how frightening it has been for her to lose her mental abilities. But as time passes, I realize that the more she forgets, to a certain degree, the less frightened she is. She no longer remembers what she is forgetting, if that makes any sense.

It is these situations which prompt me to embrace the words of wisdom that I will never be handed any in life I cannot handle. And by doing so, I initiate a mental reboot of my own internal hard drive. I restart, reset my preferences and clear my cache. And with a fresh perspective, I keep putting one mental foot in front of the other. Because I know if I am going to be able to continue on this journey, I need to embrace the challenges as they come. And move ahead, one small step at a time.

The Walrus Strategy

The time has come, the Walrus said,
To talk of many things:
Of shoes and ships and sealing-wax
Of cabbages and kings
And why the sea is boiling hot
And whether pigs have wings

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This little ditty from “Through the Looking Glass and What Alice Found There”, written by Lewis Carroll in 1872, bounced back onto my radar this past week. It entices the reader with the promise of an intriguing chatty-cathy session with the Walrus.

Yet if you read the poem “The Walrus and The Carpenter” through to the end, you discover the Walrus and his pal eat all the oysters they have persuaded to leave a cozy sea bed to share a pleasant walk and a pleasant talk along a pleasant beach. With the oysters occupied with the Walrus’s discussion of topics ranging from cabbages to kings, they were clueless that they were to become nothing more than a sumptuous snack.

Great strategy for the Walrus. Not so good conclusion for the oysters.

Upon reading this poem again…after many years of neglect for a lesson learned as a child sitting at my father’s knee…I realized my husband and I routinely employ the Walrus Strategy when dealing with our puppies. No, we do not eat our puppies. But rather, we have enticed them with the promise of a favorite treat if they will quickly come into the house…so they will not see the bunny sitting along the outside of the fence surrounding our back yard…preventing a rousing romp along the fence line peppered with frantic barks echoing throughout our neighborhood.

Great strategy to keep the puppies calm and quiet. And good for the bunny’s peace and contentment.

When driving home from a visit with my elderly mother yesterday morning, I realized that I have also been employing the Walrus Strategy during my recent visits with her, in an attempt to keep the dementia at bay. I focus our conversation on happy topics, to keep my mother’s mind occupied and distracted from the nasty repetitive thoughts that can sometimes envelope her.

I routinely chat about the antics of our puppies. Or share a little anecdote about one of my husband’s and my recent adventures. My mother typically responds with a memory from 30-plus years ago, and our conversation remains pleasant and keeps a smile on her face.

Great strategy for my peace of mind. Not so good for our nemesis, Missy Dementia.

However, this strategy is not full-proof. Because no matter how hard I try to keep the conversation positive, Missy Dementia will typically rear her ugly head at some point, sending my mother into a mental tailspin as she regurgitates the same nasty thought over and over and over again.

Unfortunately, the Walrus Strategy is hard to re-employ. So, I simply chalk it up to the rules of the game at this stage in my mother’s life. And take comfort in knowing that at least a portion of our visit was pleasant.

And I will let you in on another little secret. In the end, I would much rather be a Walrus than an Oyster.

Hide and Seek

Back in the day when I was a young lass, I used to enjoy a game of Hide and Seek on a breezy summer afternoon. I was a good Seeker, since my neighborhood playmates would usually hide in the same places, which made them easy to find. There was a sense of comfort to their predictable strategy in playing the game.

I was also a good Hider, since I would never hide in the same place. There was a sense of adventure to my non-conformist strategy in playing the game. Yet I do admit, I would become bored after a few rounds of a game where the outcome always seemed to be the same. And I would look for a more amusing form of entertainment elsewhere. Much to the chagrin of my playmates.

As my elderly mother falls deeper under the spell of the nastiest playmate in our current neighborhood…our nemesis, Missy Dementia…I have rediscovered the game of Hide and Seek. With all its predictability and its non-conformist strategies.

The first round of our game started a few months ago, when I entered my mother’s room at the assisted living facility where she now lives and she claimed she could not find her address book. She was frantic, because this book contains all the phone numbers she needs, including mine. After looking through the piles of magazines and birthday cards scattered next to her phone on the table under her window, I realized I was looking in the most predictable of hiding places. I was looking for her address book where it had always resided since she had moved there.

So, I put on my Seeker Hat and started my search. I poked around her nightstand and I located her address book on the bottom shelf, stashed under an empty box of Kleenex and a pair of slippers she never wears. For some reason, known only to my mother at the moment she did so, she had put the book there for safe-keeping. Only to forget she had done so, a few moments later.

As round after round of this game of HIde and Seek continue, I have been the Seeker for a multitude of items. Pens that magically disappear and reappear in the top drawer of her nightstand. A new box of hand soap that is right in front of her on the shelf next to her bathroom sink. And my personal favorite: dirty underwear that changes its hiding place with every dirty laundry pickup I make.

Because of her dementia, my mother’s patterns of behavior are predictably unpredictable. Good news is that I am rarely bored. Bad news is I now find myself craving a sense of comfort bred by predictability.

And while I wish my mother could remain carefree and enjoy a game played on a breezy summer afternoon, I know Missy Dementia has her own strategy. And in the end, it is she, not my mother, who will be the victor.

Back In The Saddle Again

My short, albeit welcome, reprieve from my responsibilities for my elderly mother came to an end with my visit with her yesterday. Overall, she was a happy camper. But did slam-dunk me as I walked into her room and before I even had a chance to say hello. She was obsessing over the instructions on how many times a day to use the special toothpaste the dentist had given her three months ago. So, I addressed her concerns, then said hello and gave her a hug and kiss.

After that, it was a typical visit, as I put away her clean laundry and a myriad of her personal care items. Our conversation ran to the usual topics, regurgitating them in what has become the usual cycle of repetitiveness.

I did run into Head Nurse Kay as I was heading to my mother’s room. Kay said that my mother has seemed less anxious since she has been on a new medication to help with her most recent and higher level of anxiety. But she is still obsessing about what she perceives to be a new and mysterious fan noise in her room from the heating and air conditioning system. And is still bothering the maintenance guys multiple times a day. Kay said the nursing and maintenance staff have developed a new plan, where a maintenance guy will pop into my mother’s room once a day, instead of four or five times a day like they had been doing.

As I left my mother’s facility, I felt the same sense of sadness that I have been for quite a while now. This feeling has become as familiar as an old friend. A very high-maintenance friend, who needs to be constantly reassured and cajoled and sweet-talked into submission.

And that’s okay. Because I know this feeling will only continue to gain strength as time passes. As long as I can continue to embrace it, I can continue to manage it. And by manage it, I mean accept it for what it is, and find new methods to cope.

So, I am back in the saddle again. Rockin’ to and fro. And going my way the best way I know how.

Reverb

My elderly mother’s most recent downward spiral into her dementia has opened up a new level of awareness for me. And once again I find myself exploring unchartered waters, hoping I can keep myself afloat, let alone on course.

My visit with her yesterday morning began as most of our visits do. We hugged and kissed and shared smiles. I put away her clean laundry and checked the inventory of her personal care items. She asked how I was doing. And how my husband was. We chatted about the weather. All pretty routine stuff.

Then suddenly her demeanor changed and she asked me if I heard “that noise”. What did I think it was? It has been happening all the time now, you know. And no one comes to take care of it.

The noise she is referring to is one she has been hearing since she moved into the assisted living facility almost two years ago. It is the sound of the fan for her heating and air conditioning system. It is a faint whirring noise that most of us would not even be aware of unless we were asked. But it is a sound my mother has been obsessing about lately. And one she keeps pinging the maintenance staff to come fix, because she keeps forgetting that she has contacted them and what they have told her.

I now found myself in the position of having to explain to her, once again, the source of “that noise.” And as I was doing so, Head Nurse Kay knocked on the door and came into my mother’s room with a happy hello. As Kay handed my mother her morning meds, she explained there was an additional pill in the cup. Just like yesterday. As my mother asked what it was for, Kay turned to me and raised an eyebrow. Should Kay explain or should I?

I figured since Kay had run point yesterday, I would take the ball this morning. I told my mother it was a new medication that “Doc”, our family doctor, has prescribed. Because when she cannot remember things, she gets upset and anxious. And this medication will help her with that anxiety without making her drowsy or loopy. And while none of us care if she does or does not remember things, we do care when she gets upset. Because we love her. And want her to be happy and healthy.

And she understood. She got it. She even joked about the bright color of the pill in her cup.

When Kay left, my mother and I continued our conversation about “that noise.” She showed me the note she had written that morning to give to the maintenance staff, asking them to fix the problem. I showed her the note the staff had taped to her wall above her thermostat two weeks ago, stating that the faint whirring noise she hears is the fan and is normal. I watched as she tried to process the information I was sharing with her. It was worse than watching a horror movie. Because this was real and not the product of a creative imagination.

My mother and I did manage to end our visit on a happy note. And as I was leaving, I ran into Nurse Kay. She told me this latest behavior of my mother’s is typical with folks who suffer from the level of dementia my mother does. And that each person’s obsession is different, because each person’s brain functions differently. The common element is the paranoia.

Paranoia? Who woulda thunk?

I drove away from the assisted living facility with a heavier heart than when I had arrived. It is a feeling that I have come to accept as my new norm when dealing with a mother suffering from dementia. It wasn’t until later that I felt the full effect of my morning visit.

Some folks shed a tear or two in the privacy of their vehicle, to relieve their stress after a visit with a dementia-infected loved one. Some folks embark on a five-mile run, hoping the endorphins and the echo of their feet hitting the pavement will give them some relief.

I tend to focus on my drive home, because the open road has always brought me a sense of calm. I take in the surrounding views of the rolling countryside, and find my center again. Except, it didn’t seem to work this time.

As I went about my work day, I found myself annoyed at the tasks that I would have taken in stride had I not seen my mother that morning. I was experiencing a booming reverb from my visit with her. A backlash of negativity that hit me like the proverbial ton of bricks.

Shoot…this is new.

Well, I did get over it. And it didn’t take long, once I recognized it for what it was. However, the experience did open up a new level of awareness for me. And reminded me that I was still exploring unchartered waters. But I am keeping the faith that I can still keep myself afloat. And will stay on my course.

The Next Leg

I have often referred to taking care of my elderly mother as a journey. One I am sharing with her as she travels deeper into dementia and the final stage of her life. It has been a bittersweet journey. One filled with great joy and great sadness.

She is not exhibiting any behavior that is out of the norm. And one of the lessons I have learned is that dementia can be very predictable. Loss of short-term memory. Confusion in unfamiliar surroundings. Anxiety over the loss of both mental and physical abilities.

The longer I have traveled this road, the easier it has been to define the patterns of decline. Typically, we roll merrily along at status quo, then we slam dunk into a downward spiral where her mental abilities plunge. Then we hit a plateau and roll merrily along again. Then we repeat the cycle.

Over the past two months my mother has been in a severe downward spiral which has taken me to a much higher level of concern. Her short-term memory is almost completely shot. Her anxiety level is increasing at an alarming rate. This combo sets her into a repetitive cycle of activity, because she can no longer retain any memory of a recent activity.

When she pings the nurses at the assisted living facility, asking them repeatedly throughout the day for her medications…and they reassure her, once again, that she has already received them…that is par for their course. Because the nursing staff considers responding to my mother and the other residents, who are also exhibiting the same symptoms of dementia, as simply a part of their daily duties. No worries.

But when my mother swears she hears a fan whirring in her room, or a buzzing sound or a clicking noise coming from the thermostat which regulates her heating and air conditioning…and she keeps insisting that the maintenance staff come fix it…this is not par for their course. Because the maintenance staff does not consider responding to four calls a day from my mother…simply to reassure her that all is the same as it was two hours ago…as a normal function in the course of their normal day.

So, how do I fix this? How do I find a solution? What can I do? The answer is simple: nothing.

There is no magic button to push to make this go away. While there are medications available to alleviate her anxiety, the side affects may far outweigh any benefits. So, once again I find myself swirling around in this downward spiral, watching my mother spin further and further away. Only now, she is making it difficult for the folks who are caring for her. And that is a problem and one that does need to be addressed. So, I am once again relying on the professionals…working with our family doctor and the head nurse at my mother’s facility, to determine where we go from here.

I am also relying on my personal support staff. Friends who have already traveled this road with their parents. Gal pals who have already taken this journey with their mothers and come to the end of their road. Their reassurance that I am still on track and heading in the right direction has been comforting.

I know I am doing all that I can. I know this stage in my journey is par for my course. And I know that my road ahead will only get bumpier.