She Sleeps

I recently watched the older, better version of the film, "Yours Mine and Ours," starring Lucille Ball and Henry Fonda as widow(er)s who met, fell in love ~ only later discovering they shared 18 children between them.

In this movie, as often occurs in real life, love trumped reason with the two eventually marrying, thus creating a setup for untold mayhem as they melded their menageries.

After settling their 18 tax-deductions into bed, the two naively prepared to enjoy the first night together as husband and wife. The anticipation was short-lived, however, when three or four of the youngest burst through the bedroom door announcing their intention to sleep with the newlyweds out of fear of new surroundings as well as a raging storm. Life would never be the same.

The next morning I awoke at 3:50 AM. I hadn't received a page ~ I wasn't even on call. Wide-eyed, I lay in bed staring at the ceiling thinking about the crazy movie as well as lamenting another lost opportunity to "catch up" on my sleep. Suddenly an odd, random thought crossed my mind:

Until the past year or so, I had never seen Mother sleep.

Why the thought captured my imagination I will never know but it struck me in such a way that any return to sleep lost out to a chair and computer keyboard.

I would assume many would argue my family was a bit provincial. While we were certainly allowed in their bedroom during the day, I can think of no circumstance which would have warranted an intrusion into the sanctity of the room at night. I can add with absolute certainty ~ storm or no storm ~ none of us ever sought sanctuary in the safety of their bed; it simply never happened.

For myself, I find this business of jumping onto the beds of family and friends to be perfectly natural; I always feel a bit closer to others after these early morning, rumpled hair, blurry-eyed conversations ~ as if I have taken yet another step toward premium membership to a club. But for all the enjoyment of discussing politics or planning the day, I will admit to a sub-rosa "pull" that would have me get up and leave the room. Somewhere in the dark recesses of my dusty brain, the distant admonishment not to disturb the sanctity of a bedroom survives.

Following what I had always presumed was the natural order in everyone's life, Mother was up and dressed well before any of her children. Once we were all eventually enrolled in school, there was the daily process of making sure each was appropriately attired (siblings claim I once somehow managed to wear pajamas to school) followed by a hearty breakfast ~ that "most important meal of the day." After finishing, each of us was bustled out the door, packed lunch in hand, to then make our way to school ~ times being different, everyone walked.

If Mother then took a much needed nap, I never knew it.

Mother operated in high gear; when her health allowed, she was never deterred by any person or for any reason. She was the living embodiment of the proverbial Energizer Bunny.

When she wasn't shopping for groceries, making dinner, baking desserts, or cleaning she somehow managed to find time to garden, sew, knit, take the occasional art class, play bridge, or raise a never-ending lineage of stray dogs, cats ~ even fowl.

It was only after our stepfather retired from corporate life that we began to see the two of them slow down a bit; the first small step was in the form of short naps taken in the afternoons. I can personally sleep anywhere and at any time ~ medical school and residency has a way of conferring this ability. For the life of me, however, I never saw Mom take a nap on a chair or her favorite couch; she reserved sleep for the privacy of her bedroom.

Specialists have long assumed people need more sleep as they age; this is what I assume my grandfather referred to when lamenting that "youth is wasted on the young." The notion that sleep starts to deteriorate in middle age and steadily erodes with advancing age seemed so obvious that few challenged the prevailing wisdom.

Researchers now feel, however, that sleep patterns do NOT change much from the age of 60 or so; the studies seem to indicate poor sleep is not due to aging but, rather, results from illnesses and the medications used to treat them.

There also seems to be a recognized process whereby poor sleep feeds back to cause a further reduction of health. At least as regards pain, a common factor in disrupted sleep, a restless night can potentiate pain the next day which can further make sleep more problematic.

In Mother's case, she experiences what can only be labeled "fragmented sleep." Her interrupted pattern of sleep has led to impairment of her pain pathways. She feels pain more easily, is less able to inhibit pain, and develops more frequent neck and backaches. The vicious cycle ensues.

Fifteen months ago, while clearly suffering the ravages of Parkinson's disease, Mom walked through the front doors at GVM on her own two feet. Over the next couple of months, she did everything ~ including breaking through a security door ~ to "get the hell out of that place" ~ to go home. The nursing home could not initially deter our Energizer Bunny.

Effectively bedridden since the beginning of this year, however, she is no longer capable of pursuing an exit strategy or anything else that once mattered; instead, she spends more and more time sleeping her days away.

It has admittedly been unsettling seeing Mother spend so much of her time in sleep. Strangely, it has never seemed as if I have intruded on her privacy as I watch her sleep ~ so much about life in a nursing home requires everyone to forfeit most of what exemplifies a "normal" existence. Over time I have even come to somehow enjoy listening to the quiet cadence of her breathing ~ there is some small comfort in this.

But there is also the natural inclination to spend time lamenting the woman that was; the energetic Mother who could make everyone around her seem slothful as she moved through her days. This is clearly not the life she envisioned for herself ~ a fact which saddens all of us. I have a sense that if Mother were fully aware of her circumstances she would have a lot to say about how she is spending these days. As for the rest of us, we have learned to accept the simple benefit of sharing time together; asleep or not, being with Mother is a gift.

When asking my oldest brother to confirm or dispel my notions about Mom and sleep, he went even further adding he "wasn't altogether certain she ever slept."

He then relayed a forgotten memory from a distant Christmas Eve years ago when Mom "slept" on the floor of our room ~ apparently out of fear we boys would ruin our morning surprise. All night, as we tossed and turned from excitement, Mom was repeatedly heard murmuring the admonishment to, "lie still."

Whether she actually slept that night we will never know.

Rest assured, she was there when we awoke.

"525,600 minutes"

July 7, 2008

I will never forget that day.

Mom was up early and dressed; she actually seemed to be excited. She didn’t understand.

I couldn’t do the work my brother’s were doing – it was impossible. I was a coward.

Instead, I opted to go with my cousin, Lou Ann, and sister-in-law, Linda, who had crafted plans to take Mom shoe shopping and then out to lunch. She didn’t understand.

We also took along the new cherry-red wheelchair Mother had been so excited to receive; it didn’t matter what it was -- it had been a gift from her “Sweetie.” The wheelchair had not yet become an essential fixture in her life; it was available. She didn’t understand.

We walked out of their home around 10:30 in the morning. She didn’t understand.

We shopped for shoes, and then went on to the Olive Garden sitting down for lunch. That is essentially all I did; I was not interested in food. The mood was somber; it was a wake of sorts. She didn’t understand.

At noon, as choreographed, after a few cell phone calls, we made our way to the van. I was physically ill by the thought of what was to come. I understood. Did I?

We drove past the boulevard leading to their home? Oh, my God! This is for real.

We drove another half-mile or so and then turned onto a property I had visited before in the final years of my Grandmother’s life. I remember thinking, again, “Oh, my God.” But Mom seemed fine; she was making plans and even a grocery list. She didn’t understand. Or did she? She had certainly spent more time here with her Mother than any of the rest of us; could those memories have faded as well?

My twin brother was in the circle drive – as planned; he was hurting – visibly -- but he was determined to do what was necessary for Mom. He was strong – or at least he acted the part. He understood.

We had arrived. Our life, as we knew it, changed in a moment.

I remember the sense of a weight seeming to push me back as we entered the doors; I didn’t want to be there under any circumstance. It was supposed to be for the best, right? I honestly did try to put on a brave face. It wasn’t easy.

Feeling numb and moving along unfamiliar hallways, I felt pulled – as if by some invisible rope – toward an uncertain reality; I was blindly following everyone’s lead.

Suddenly, there it was. Room 610. Worse was the card that hung beside the door which read, “Dorothy Scott.” I felt weak in the knees.

What my brother’s accomplished in the hours after we left the house that morning with Mom was miraculous. As if by magic, many of Mom’s favorite things had been transported to that room – it quite honestly already felt like a “home.” On seeing her favorite rocking chair, Mom took a seat with nary a complaint; she was alright. My brother’s had worked a miracle – at least from my point of view. By making this day – this transition -- easier for Mom, they had paved the way for the rest of us as well.

I was the weakest link in the chain that day. I had not prepared myself for this eventuality. Yes, it had been discussed over time but there was a part of me that had continued to push the thought aside for “another” day.

July 7, the day that had dawned just a few hours before, had brought more change than I could have imagined.

Before leaving the house with Mom that morning I had the opportunity to tell Bob what was on my mind. I assured him that while I was personally distraught by the blinding reality of the day, I didn’t want him to feel any guilt. Though my heart was breaking, I assured him that he was doing the right thing. He seemed strong but I suspect he was holding on by a thread.

Has it really been one year? It feels like a minute. It feels like a lifetime.

Mom understands. Mom doesn’t understand. It is all true.

One year.

“525,600 minutes … moments so dear … how do you measure, measure a year?”

“Seasons of Love” from the musical, “Rent.”

Parkinson's Disease

A picture of Mom about the time she entered college; the trial of Parkinson's Disease had not yet entered her world.

Mother is little more than five feet tall (plus some change) and has been blessed to never experience problems with her weight; it was probably enough to anger a few of her friends. 

From what I know of her college days, she possessed a wicked sense of humor and had a tremendous zeal for life. She was in her glory days -- enjoying every moment. Life was very good.

It was after marrying our father as they worked to build a family that health issues emerged; she has almost never been free of these problems since. 

Her first major medical concern was precipitated by her small stature combined with the burdens brought on by child bearing; her back ultimately failed, forcing her to undergo numerous agonizing surgical procedures to bring about even a modicum of comfort; in all the years since she has suffered quietly with ongoing back problems. 

She was later diagnosed with what was thought to be Tuberculosis. The extent of her disease was so pronounced that her doctors were forced to perform extensive surgery -- certainly by today's standards -- to remove the diseased right lung. It was a monumental trial for her physically. 

As if this was not enough, she later suffered a head-on collision at the hands of a drunk driver -- driving on the wrong side of a bridge -- which further compounded her extensive back problems with a neck injury. 

In the mid-1990's, she began to demonstrate symptoms of neurological impairment: a shuffling gate, cramped writing, as well as a paucity of arm movement when walking. This led us to suspect the probable onset of Parkinson's Disease. Unfortunately, her doctor's took a few frustrating years to finally reach the same conclusion. Once appropriate therapy was initiated her symptoms improved. It was proving manageable. 

The problem with Parkinson's Disease is that it is progressive. Certain dopamine producing brain cells die resulting in less available dopamine necessary for proper body function. As the cells continue to die, you are forced to throw more and more of the "dopamine-like" drug(s) at the problem so as to achieve an adequate result. Unfortunately, just as the dopamine producing cells are fading, the receptors that feed on her medication also begin to diminish in number. It is a losing proposition. 

On average, patients with Parkinson's live anywhere from 15 to 25 years; Mom is well into 15 plus years. She is not on the winning side of these averages; Mom's health has declined precipitously in the last year alone. 

Nature has a curious way of balancing everything. Mom has been blessed in so many ways throughout her life; it seems the price for all the good may have been at the expense of her health over time. Yet even as she has endured a great many medical issues over the course of her long life, I have honestly never heard her bemoan these problems -- current or past.

I wish I could write that the litany of her medical concerns ends here. In the last two to three years, a form of Dementia has altered her life with a vengeance.

She may not be one to complain, but I, for one, have been left wanting to shout, "Enough."