Nursing Notes Excerpt

Tuesday, August 18, 2009 11:30 am

Dorothy's screaming out "AAAAHHHH!!" I ask her what's wrong & she says, "Oh nothing, just calling the birds!" :)

Four O'Clock

ime has a habit of slipping away once we settle into routines. This “truism” seemed to fail us during those first few weeks following Mom’s move into the nursing home. From my perspective, these represent some of the most challenging days of my life.

Prior to the move, dementia had wrecked havoc on Mother’s sensibilities to the extent that she convinced herself she would be better off moving to her own apartment rather than remain in the comfort of her home. Even though the painful decision to transfer Mom’s care to GVM had already been made, her personal decision to move seemed to make the process easier for everyone.

I doubt anyone was more shocked than I by the apparent ease with which she adapted to her new surroundings. Mom seemed to accept nearly every aspect of her new life with nary a complaint. There was the sudden lack of personal privacy as well as the institutional process of managing almost every aspect of her life from taking medications to scheduling her showers and meals. Mother endured each new intrusion with grace.

At least, for a while.

A few weeks after arriving, a new diagnosis was added to Mother’s problem list: Sundowner’s Syndrome.

It is not uncommon to see patients who become irritable or confused as a result of unfamiliar hospital settings or following anesthesia. This “hospital psychosis” is a well-documented constellation of symptoms that occurs appreciably beginning in the late afternoon and early evening hours. While this psychosis can affect any age group, Sundowner’s Syndrome is generally limited to the elderly.

Also called, “sundowning,” it is most often associated with the early stages of dementia but can also be present in mood or sleep disorders. Sufferers experience periods of extreme agitation and confusion beginning late in the day which can be manifested in irritability towards caregivers and nursing home staff. While previously felt to be related to altered “circadian rhythm” cycles, current studies point to other causes such as drug-drug interactions and stress directly related to lower cognitive functioning.

One theory: the constant mental process of “normal” living can become overwhelming. These elderly individuals seem to have too much incoming information which may overload their already restricted cognitive functions. This results in periods of irritability and negative thoughts.

This process is not felt to be willful, per se. But, there is some conscious level of “frustration” due to awareness by the sufferers who realize they can no longer adequately process incoming information.

Come three or four in the afternoon, everyone began to gird ourselves for whatever might come.

On a good day you might find yourself walking in perpetual circles through the various halls; while it wasn’t the circumambulation of the Ka’aba during the Hajj, it may very well have been as exhausting. It was never a matter of slowly walking alongside your elderly Mother – you had to work hard just to keep up.

She moved as if on a mission. You never knew where she was headed but her forward movement had an element of intent. You would often have to take hold of her sweater or jacket to prevent forward momentum from propelling her upper body unsafely ahead of her center of gravity. There was no stopping her.

And then there were the bad days.

She would often be resting quietly then suddenly, with the sweep of a single moment in time, leap from her bed and declare her intention to “get the hell out of here.” Moving quickly and frenetically about the room, she would gather up any and all possessions in her path, bundling them for the trip home. You would have to follow her about the room in an attempt to prevent her from hurting herself in the process; as soon as you made any effort which she felt might be contrary to her intention, you were immediately, “persona non grata.”

Alternatively, she would leap from her bed and begin some chore which had, by this time, become very difficult for her to complete. Washing and setting her hair is one example. Once she had the idea in her head she was a woman possessed. There were some days when a caregiver would be allowed to help, but, more often than not, she would beg to be left, “the hell alone.”

One might ask what could be wrong with allowing her to wash and set her hair. In an ideal world, the answer would be "nothing." But, her “voluntary” movements had become erratic; these “dyskinetic” movements posed a potential hazard to her. She might be standing at the mirror combing her hair then suddenly and inexplicably hit her head against a wall. Normal activities of daily living had become dangerous.

There were many days when most everyone felt woefully inadequate helping her through these hours. These episodes were frightening and frustrating for everyone.

Time, the occasional use of some medication for agitation, patience, as well as her ever-advancing medical condition have all but rendered this phenomenon an element of her/our past.

When taking into account the research regarding sundowning, it makes me extremely sad realizing her irritability and negativity may have originated with some awareness of the ongoing failure of her mental processes. How incredibly cruel the insult if she was truly aware of the ongoing assault against her own mind?

And all of us were helpless as we stood witness to her manifested frustrations. It was excruciatingly painful realizing we were incapable of assuaging any anger, pain, and sorrow.

Room 808

It might be said the final chapter of a love story was written Thursday, August 13, 2009.

It is a memoir of mutual devotion which began during childhood and endured for more than 75 years ~ 61 of those years in marriage.

For the past few months, Joseph had maintained an arduous and continuous vigil at the bedside of his wife, Josephine, as she struggled bravely in a losing battle for her life. Family members often begged him to take rest or to eat, but very little ~ short of force ~ would have cleaved him from her side.

Despite all of this, he was always quick with a smile, a pat on the back, and never once failed to ask, "How is your Mother doing?"

The entire family ~ their legacy ~ was at Joseph's side as his Josephine's ordeal came to an end; he would not have had it any other way.

"A wife is the joy of a man's heart." ~ from the Talmud

This could have been written with Joseph in mind; she not only seemed to be his "joy," but clearly held his heart in her hands.

While it seems their story's end was written Thursday, Josephine and Joseph understood the promise of much more to come.

I am standing upon the seashore.
A ship at my side spreads her white
sails to the morning breeze
and starts for the blue ocean.
She is an object of beauty and strength
and I stand and watch her until at length
she stands like a speck of white cloud
just where the sea and sky come
down to mingle with each other.

Then someone at my side says,

"There! She's gone."

Gone where?

Gone from my sight, that is all.
She is just as large in mast and hull and spar
as she was when she left my side,
and just as able to bear her load of living freight
to the place of destination.

Her diminished size is in me, not in her.
And just at that moment
when someone at my side says,
"There! She's gone."
There are other eyes watching her coming
and other voices ready to take up the glad shout,

"There! There she comes!"

Parable of Immortality ~ Henry Van Dyke

Sailing from this world into the life-eternal.

Room 803

Spend enough time in a nursing home and you will come to know -- even love -- a colorful cast of characters. Going to visit a family member or friend, a person can find himself with a stiff neck -- turning this way and that -- offering up "hellos" to the new friends you have come to know along the halls leading to your loved one's room.

My brother, Jim, arrived early Sunday morning to spend time with Mom. Completing his litany of greetings as he neared Mom's room, Jim passed Room 803 and noticed that Guy was still in bed; he is not a man who "sleeps in." Jim stopped and offered up his usual greeting; Guy responded in kind.

An hour later, Jim decided Mom might benefit from spending a little time outside among the flowers, enjoying the early morning sun and an unseasonably cool breeze. While heading out, they were passed by the blur of Guy's wheelchair as he headed in the same direction.

Sunday was no different from any other day. Guy was on the move.

Guy is 84 years old and "doesn't look a day over 65" -- whatever that means; age is relative, after all. While heart disease and a debilitating stroke have recently rendered him unable to walk, he has managed nicely.

Herodotus famously wrote of ancient couriers who allowed, "neither snow nor rain nor heat nor gloom of night," prevent them from swiftly completing their appointed rounds. While this may not accurately apply to modern-day mailmen, Guy is the living, breathing embodiment of this credo. From the moment he laid eyes on his Quantum 600 wheelchair, he has been of a singular mind -- nothing was going to prevent him from getting the hell out of "that" building. He wasted no time.

Guy's adventures are a constant source of entertainment at GVM -- the veritable "stuff" from which nursing home "legends are made."

Once free of the building, Guy effectively took ownership of the extensive properties surrounding the facility. Everyday after breakfast, Guy takes off through the front entrance then heads down a long, winding drive eventually arriving atop a summit known affectionately to many as, "Guy's Hill." I don't know how much time he spends up on his hill on any given day; I have seen him basking in the morning sun as well as the growing evening shadows; he ventures out in rain, sleet, or snow. He wants nothing more than to be free.

There is/are (a) gaggle(s) of geese that have taken up residence on his property. He apparently makes a daily tally of these large-(ly dirty) foul. At last count, there were 44 -- give or take a few errors in accounting. And recently, he was beside himself with excitement over the discovery of a beaver at work in one of his ponds; while he never personally saw it, he went to great lengths explaining the beaver's handiwork to anyone who would listen.

I first came to really learn about Guy through word of his exploits. Gossip around the nursing home spreads faster than any fire. I had previously heard several reports of the "renegade resident" who "constantly escapes from the building in his wheelchair and 'hides out' up on a hill." One day, similar gossip was enhanced by a report that the "same man" had been discovered upside-down -- with only his wheels visible to passers-by. (Guy was fine if not a little embarrassed.) The nursing home administration ultimately conceded the futility of discouraging his adventures but demanded he add an embarrassing orange "caution" flag to the back of his chair; he decorated their flag with a "skull and crossbones."

And, this is how it was on Sunday -- as Mom and my brother set out to enjoy the beautiful morning, Guy met them along the way to his hill. My brother's earlier impression had been wrong; "Guy looks great!" Always in the mood for a good conversation, Guy was eager to sit and talk but Mom suddenly asked to be returned to her room. Before heading their separate ways, Guy asked, "Are you going so soon?"

The irony is staggering; Guy passed away two hours later with his daughter at his side.

His death came as a complete shock.

I am grateful for the time I shared with this man. I don't know what experiences made up the other 83 years of his life before coming to GVM; I only know the man who lived two doors down from Mother these past thirteen months. We all knew him as a gentle giant of a man. We shared pizza (but, sadly, no beer) on Super Bowl Sunday; birthday cake this past April; made dinner reservations for him so that he might enjoy a nice dinner (and a lot of wine) with his daughter; watched as he unabashedly flirted with my sister; made fools of ourselves attempting to decipher the "greek" instructions for a "simple" TV remote; laughed together at the latest new joke his physical therapist had shared; brought him the daily newspaper.

Like so many other family members at GVM, Guy's daughter, Suzie, disrupted her own life in another city to be close to her father after he suffered a stroke and ultimately entered the nursing home. Shortly after his death, Suzie called to relay the sad news; she later confided that she would not have traded the experience for any reason because, "I got to fall in love all over again with this man -- my Father."

Guy did make the trek up to his hill that morning. Just like every other day, he had a place to go and geese to count. None could have predicted where his journeys would ultimately take him on Sunday, but we are somehow comforted knowing he now moves unencumbered. Free of the wheelchair at last, he is travelling on his terms. Guy is truly free.

When the Poet thought of "Those Who Were Truly Great," he finished his work with, "Born of the sun they traveled a short while towards the sun, and left the vivid air signed with their honor." These words come closest to expressing the respect I hold for my friend, Guy.

A new resident will eventually move into Room 803. Guy's name placard will be replaced with one bearing the name of the stranger. And with time, many of us will probably come to love this person as well. But that room -- it will never be anything more than, "Guy's Room," to me.

And, I will never pass your hill, Guy, without thinking of you and that silly flag. We are now left alone to wonder where your new adventure has taken you.

May the road rise up to meet you.
May the wind be always at your back.
May the sun shine upon your face;
the rain fall soft upon your fields
and until we meet again,
may God hold you in the palm of His hand.
(Gaelic Blessing)

Nursing Notes Excerpt

Her First Mother's Day

"The older I get, the more I see the power of that young woman, my mother." Sharon Olds

Sunday, August 2, 2009 (10:45 pm)

"Jeannie, I love you more than you'll ever know. I miss her.

I can't explain how precious you are to me."

Family Notes Excerpt

Tracy, a trusted aide, was in the room getting Mom ready for dinner and bed.

Mom was on the cusp of becoming agitated.

In an attempt to temper Mom's mood, I went on to relay a story to Tracy about one of Mom's favorite TV commercials.

Mom never failed to get weepy over an old Hallmark Cards commercial that actually reminded her of me. It portrayed a teacher walking, "the most beautiful little boy with freckles," down the hall to class. (Her choice of words; not mine.)

So, what was Mom's reaction to my retelling of that story?

"Do you want to make everyone sick?"

Tracy very happily hugged Mom adding, "I love you, Dorothy!"