Lying

I’m still pondering the question of truth as it pertains to my mother’s perplexing mix of the real and the imagined.  Earlier this fall I had come to the conclusion that “going along” with a particular fantasy made the most sense.  But that was when she didn’t have much grounding, when her mind appeared to be more amorphous.

Now she exhibits a greater understanding of her situation.  She knows she needs to get stronger.  She has a basic, though sometimes slippery, sense that she no longer owns a house in NC.  She has referenced the fact that my father is dead.  She connects names to the faces that surround her and she has made friends.

This makes lying to her seem like more of a problem.

So we tell the truth more often.

“Where is my mother?” she asks. 

Your mother is no longer living.

“Are you sure?

Yes.

“Then why did Becka tell me she was upstairs?”

You imagined she said that.

“So I guess this is just a part of my dementia…”

I had heard that the worst phase for someone who is experiencing diminished capacity is when the individual is aware of the problem.  I thought she had managed to avoid this stage.

Complaining

My sweet cousin and her mother recently drove to town to visit my mother.  As we were sitting down to lunch, they inquired about my new job.  I said that it is “mostly good,” and didn’t offer details.  My mother seemed happy to hear this response and commented to that effect.  I guess that after ten years of complaints about my previous job, everybody is pleased to hear me put a positive spin on things.

I always thought I was being honest when I shared my concerns.  I thought I was offering both sides—what I liked and what I struggled with.  But maybe I erred on the negative side.

My grousing to my mother was partially designed to keep her at bay.  I’m overworked.  I only have time for short visits.  I can’t to this or that.  You don’t understand my crazy life.  She and I fell into conversational habits and patterns.  She would rant about certain individuals that, in her mind, repeatedly failed to behave properly.  And I would talk about various and sundry demands on my time.  We were probably both bored but seemed to locate few options that spared us from this regular litany.

 

Now we run a different course.  I try to be more entertaining.  She tries to understand things.  She routinely asks me why she no longer has a house.  At least once a week she tells me she needs a car, and once recently, suggested we run out and buy one.  A used one. 

But she rarely complains to me.  She told my Aunt Linda that she was “bereft” at the loss of her home and possessions, but she has not shared this with me.  The nurses tell me that she scolds her roommate, who is very loud and very bossy.  Very.  But my mother tells me “I like her enough.”  She appears to feel that my husband and I needn’t be burdened by her trials and tribulations.

It is strange. This woman, who has spent her life time judging others and applying honed critical skills, is now described by those her tend her as “sweet.”

 

I can’t quite get used to it.  It doesn’t fit my picture of her at all.

But even as I resist, I’m learning.  

Elopement

I had a meeting with my mother’s care team yesterday.  It started with the administrator shaking his head and repeatedly muttering her name.  Thing is, up until the day before, I thought she was doing so much better that we would be having an entirely different conversation.  I was preparing to look into assisted living options for her.  I thought she might be moving towards more independence.

I was wrong.

She is stronger.  She can help lift herself from the bed to her wheelchair or from her chair onto the toilet seat or into a car seat.  She can raise her feet several inches off the floor, push the wheels of her chair with her skinny arms and knotty hands and easily maneuver the hallways.  She rolls with ease and speed.

But it turns out that this newfound ability is a mixed blessing.

It makes her harder to catch.

The gain in clarity my mother has made in the past month seems to dissolve as she tires and the daylight begins to disappear.  This relatively common behavior for individuals with dementia is called “sun-downing.”  My mother’s late day confusion has caused her to believe that she could leave the facility on her own and “catch a ride” downtown to her sister’s office.  And then her sister would give her a ride “home.”  There is more than one problem with this idea, but the primary flaw lies in the fact that her sister lives 125 miles away.  Yet, thinking it was a fine plan, she attempted to put it into action.  And she made it as far as the parking lot.  Twice.  Then they called me.  She was mad and didn’t understand why she was being forced to return.  So they put her on a locked ward for the night.

Nursing home workers call this behavior “elopement.”

Despite the fact that most of us connect this term to secretly running away with the intention of getting married, the first definition listed under “elope” in Merriam-Webster is:  to slip away, to escape.  And that is precisely what she tried to do.

When we visited the next day, my mother was confused about the night she spent on the second floor.  She thought she had been somewhere else altogether, though she recognized a similarity in the food and crockery.  She shared with me that perhaps this new place was run by the same people, and maybe even had the same chef.

We tried to reason with her but she didn’t quite grasp our various arguments, especially the one about not wanting her to get disoriented.  Her response: “How could anyone get lost in Greenwood?” (Greenwood is a small town in SC in which she grew up, but it is nowhere near her current home.)

Yesterday she also inquired about her mother, wondering where she had gone and why it was taking so long for her to reappear.  My grandmother died in the early 1990s and was buried on a hot summer day by a preacher she had never known and who, during the graveside service, mispronounced her name with excruciating regularity.  But these facts no longer register in my mother’s mind. 

Elopement.  It sounds better than it really is.

Failed back syndrome

Doctors have a name for chronic pain that can result from spinal surgery.  They call it Post-Laminectomy Syndrome, though the common and more descriptive terminology is Failed Back Syndrome.   This is a condition in which damage to the spinal nerve produces sciatic pain, which is realized, in the case of my mother, as a sustained sensation of burning or stabbing in her right foot.  She has suffered from this debilitating pain for many years, though the last eight have been the worst. 

My father died in August of 2003.  At that point my mother’s pain medication was entering her bloodstream through a small pump implanted in her abdomen.  When this method began to make her ill, she was switched to oral medications and within months was taking ninety milligrams of morphine sulphate daily.  Except on bad days, when she had the prerogative of a “break through” pill that was 10mg.  She could take up to three of these smaller doses in addition to her other allotment if her need was particularly severe.  But often nothing was adequate to quell her screaming pain.  So her solution was to self-medicate.  For a year or more, she added copious amounts of vodka and diet tonic to her regimen of pills.  And then she switched to white wine.  Chardonnay. 

About three years ago my mother developed a pattern of drinking to excess and then falling down. She sustained minor injuries at first.  A sprained ankle, a bump on her head.  And then it got worse.  She broke her elbow and then her ankle.  Or maybe the ankle came first, I can no longer remember.  We all tried to convince her that her behavior was compromising her independence.  Promises would be made.  And then broken.  We offered solutions.  She turned everything down.  Her support systems began to waiver and weaken.  Her family was confused and angry.  Her friends, who were justifiably frustrated, stopped calling and dropping by.   She sank more deeply into her loneliness and depression.  The cycles got shorter.  Rather than having three or four months between problems, we got down to just three or four weeks between visits to the emergency room.  At this point, she relented, initially agreeing to therapy and then, after a few months, to moving.  We put her house up for sale, we located a counselor that she actually seemed to like and we all breathed a collective sigh of relief.  But failure loomed.

Yesterday, as I sat by my mother’s bed, I watched a familiar scene.  She lay there, dressed in the soft blue that compliments her eyes, grimacing and moaning in pain.  Conversation was disjunctive.  “87?  Are you talking about Marj?” she would ask, apropos to nothing I had actually said.  Or angrily, “No, not mashed potatoes.  Potatoes that are mashed!!!”  It was not easy to be with her.  It is not easy to witness her pain and confusion.  It is far too easy to see her current life, in which she is dependent, hurting, and unmoored, as simply cruel.

Confabulation

Confabulation is a medical disorder that produces inaccurate memories.  It occurs in people who have sustained damage to the basal forebrain and the frontal lobes through an aneurysm, vascular constriction and/or head injury.  Oxygen doesn’t make it to every nook and cranny, so the cells die.  That loss or degeneration can cause an unusual phenomenon, the ability to fabricate stories that are perceived by the teller as being the absolute truth.

An example.  My mother mentioned to me the other day that she had been to see a new doctor, a man named Dr. Deitz.  My husband and my father had taken her to this appointment.  His office is in a “modern high-rise building.”  When I asked what kind of medicine Dr. Deitz practices, the answer was clear:  “He’s a general practitioner.  And I quite liked him.  So did Robert.”  The addition of Robert’s opinion gave her tale authenticity, a nice touch.  But none of it was true.  My mother didn’t go to a new doctor with or without Robert and my father is not alive.  But if one didn’t know these factual details, her story would be quite convincing.

 

She mixes accurate reports with imagined incidents and thus keeps us guessing.  Did her friend from Savannah really visit with her grown son?  Did the doctors remove her from certain strengthening exercises because of a strained muscle?  Did someone in a nearby room really fall last night, awaking her from a sound sleep? The stories about the visits to Athens or the late-night parties are fairly easy to dismiss, but often there a moments in which we have to wonder about the accuracy of a statement or reported event.  It is odd to not know, to be distrustful, to have to verify things before you believe your own mother.

Left foot

After I wrote my first post I realized I had missed an opportunity to be specific.  My mother pointed to her left foot when she asked if it was Doris.  I have no idea what her right foot is named.

That is just a tiny fraction of what I don’t know about my mother.  I always thought she was relatively blunt, quick to form and offer her opinion, and easily read.  When she was mad, you knew it.  She didn’t pout or hide, she flew what my father referred to as her “red flag,” a facial expression and demeanor that was a clear warning that danger existed if you felt inclined to take her on in any way.  Her anger dissipated only after tears, furious harangues or quick, violent actions.  She threw things.  She screamed.  She made chase if you ran from her.  So I stayed away, a habit that developed into a lifelong desire to avoid confrontation if at all possible.  But it also led me to expect my mother to be always truthful and open and emotionally available.  And this capacity, that I still anticipate, seems to have vanished. 

She is predominantly a mystery now. 

Before my grandmother died, my mother used to declare, “Don’t let me go there.  I don’t want to live like that.”  “Like that” seems relatively tame to me now.  My auburn haired grandmother lived in a lovely, old home in the “granite capital of the world,” a small town in northeast Georgia.  The house had been adapted and expanded to accommodate about a dozen elderly residents.  All were relatively mobile, able to dress themselves and attend meals in the dining room.  My grandmother lived amongst a selection of items from her own home, took care in her appearance and was both friendly and docile.  She forgot pretty much everything she said right after she said it, so she repeated herself a lot.  This drove my mother crazy and amused my father (who toyed with her good naturedly). 

Before my father died, my mother used to declare, “When your father dies, I’m going to kill myself.  I don’t want to live without him.”  When her house sold earlier this summer and we were culling and packing her possessions, we found a book about suicide that she had ordered.  I don’t know if she even read it, or that she meant to really do it.  But she kept the book in its padded mailing envelope on the shelf near her bed and she continued to bring the subject up with me until one of her friends finally convinced her to stop.  After that, she started drinking heavily and all attempts to help her ended in stony silence.  She had ceased sharing her feelings with us. 

Now she can’t seem to access those feelings.  She goes blithely through the day with the false hope that she will be going home soon and that when she gets there, my father will be waiting for her.  Although why he doesn’t come to visit vexes her when she has occasion to dwell on it.  But that momentary aggravation doesn’t even break the surface of her new stillness, which is white and vast and without a shore for me to stand on.

The first three mistakes

My mother turned 80 this summer and rather than moving into a community of like-minded, relatively independent older adults as we had planned, she is currently living in a full care nursing facility in Atlanta. 

Several months ago, when she was driving home from the grocery store and a meeting with her counselor (another chapter of this story), she ran her car off the road, down an embankment and into a creek.  When she was finally located and freed, the sheer drama of the event (rather than the actual circumstances) convinced the rescue crew to have her airlifted to a trauma one center in the valley below the mountain where she lived.  And so, in just minutes, she was moved from one state to another—NC to SC and from relative freedom to total dependence. 

My husband and I arrived at the hospital several hours after she was delivered by the helicopter and  found her in the neuro-trauma ICU, alert and apologetic about the “trouble she had caused us," but also characteristically impatient with the doctors and nurses and their invasive ministrations.  This was the site of what I consider to be the second mistake (the first being the decision made by the EMS team not to simply take my mother from her wet and broken car to the local Transylvannia County hospital).  The next strategic error involved our honesty in relating my mother’s recent history of alcohol-related falls, emergency room visits and locked-unit in-patient treatments to the ICU personnel.  Their immediate response was to order a regimen of drugs designed to address withdrawal symptoms, a move that seemed to immediately peel away all reality for my mother.  She became agitated and disconnected, entering a nightmare zone in which she struggled mightily against her circumstances and the constant pain.  We told the doctors that she probably had not been drinking the morning of her accident because she had seen her counselor, who, when queried, had reported no unusual behavior.  And we told them that in past hospitalizations she had never had problems with withdrawal.  But they persisted and my mother’s body reacted.  She had to be tied down.  Protective mittens were placed on her hands.  She no longer recognized relatives who came to visit and her words were infrequent and garbled.  She wouldn’t eat and they eventually inserted a feeding tube.  Her hip and pubic bone fractures were left untested because they refrained from standing her up, the ultimate test of her bones. She was confused and hurting and they didn’t seem to be able to do much of anything for her, or for us, except suggest patience. But after two weeks in the ICU the bruising in the pubic area, stomach and head cleared and she was moved to a private room with a 24-7 attendant.  The next six weeks involved a decent and hard-working physician’s assistant, a caring palliative nurse, an utterly incompetent case worker, uncertainty and divided loyalities.  The third mistake was a big one:  we trusted the System to work. 

This blog is my attempt to deal with the many changes in my mother's life.  It is my opportunity to rant, but since I'm sharing, I'll try to lighten the load with some of the crazy stuff that accompanies this slow, and then fast, descent into the kind of old age that none of us want for ourselves.  Thus the title.  In a recent exchange, my husband and I attempted to explain to my mother that her roommate's name is Dottie, not Nicki, as she persists in calling her.  When offered Dottie's formal name "Doris" as further clarification, it had the opposite effect, and in her bewilderment my mother pointed to her foot to ask if that is what we were trying so hard to identify.  Now her foot has a new name.