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Alzheimer's Disease

Strange Daze And Guardian Tribbles

Crossposted to DailyKos.

Over the past few weeks, amid weird mishaps and unexpected issues, I've been thinking a lot about Mumsie, my mother-in-law who passed away from Alzheimer's Disease two years ago. I've been working to catch up on items I've got to finish for a special project I'm working on with another Kossack on the topic of Caregiving, so she's naturally not been far from my mind.

And perhaps we've not been far from hers.

Land of the Lost...and Found

Sometimes as we putter through life, we come across something that triggers an avalanche of memories. Such was the case last Sunday, January 18th, as I worked with Wifey to get a few things done around the house. We still have gobs of things left to be done since Mumsie's passing; we hadn't gone through what appeared to be the nearly infinite piles of things that were left behind, sometimes hiding bits and pieces of our own lives intermingled with bits and baubles that Mumsie had collected, stacked, sorted, unsorted, re-sorted and reassigned as her dementia grew and worsened.

As Wifey and I tried to get an old sewing machine to work so that we could finish a project hanging curtains in the living room, Wifey handed me an envelope with my name on it.

I hadn't seen it in nearly two years, but recognized it instantly. It was from early summer 2007, from one of the editors at ePluribus Media: badges (plastic name badges that looked like stylish credit cards).

The badges had been intended for use at DemocracyFest 2007, where luaptifer and I were slated to give a presentation. The badges had disappeared from my perpetually cluttered office within a day of receiving them, forcing me to question my sanity as I tore apart the office for several days -- backwards, forwards and sideways -- trying to locate them.

Whispers of Memory

Crossposted to DailyKos.

A year has passed now -- has it already been a year?

Mumsie passed away as midnight rolled the calendar from December 18th to 19th last year. It was only recently that we started to gather her things and put them away; some donated (lots of clothing), some to the trash (old mattresses and old furniture)...some things, of course, staying where they'd been for years.

The roses in the window box
Have tilted to one side
Everything about this house
Was born to grow and die

Oh it doesn't seem a year ago
To this very day
You said I'm sorry honey
If I don't change the pace
I can't face another day
        -- "Love Lies Bleeding" lyrics by Bernie Taupin

Some things just seem to need to stay a bit longer.

The Chestnut Tree

originally published 2008-11-07 06:12:51 -1000 - bumped by roxy

Mumsie passed away last year, on the cusp of December 18th and 19th. Next week is Wifey's birthday; a little more than one month later is the first anniversary of her mother's passing.

Today, Wifey ran across the following video -- it is a sweet, special memory of the special bond between a mother and daughter called "The Chestnut Tree."

It reduced her to tears.

I thought I'd share it with all of you. Below the fold, other pieces I've written in memory and honor of Mumsie and the caretaking journey we all took together.

"My Name Is Lisa" -- A Powerful Short Film About Alzheimer's Disease

 

_____

"You want to have some idea what it is like to be a care-provider for someone with Alzheimer’s or other age-related dementia? Watch it."

            -- Jim Downey
_____

Before reading the rest of this essay, watch the following piece.

My Name Is Lisa


Musical Deconstruction of a Life's Worth of Memories

Music and memory are both powerful influences on life; it's not surprising, therefore, that we can often find music and memories mixed throughout human history. In Part I: Stir of Echoes, I reflected upon the passing of my mother-in-law in light of several strange happenings around our house that suggest to us her continued presence and apparent intention to watch over us. I ended by describing how I'd assembled a playlist of music that helped me keep my memories of Mumsie alive by evoking that special stir of echoes that manifest within my heart whenever I hear certain music and melodies. This piece delves into the elements of the playlist and the memories each one embodies. By sharing it, I hope to further share the unique experience of knowing Mumsie as I had come to know her during the twilight of her years.

Stir of Echoes

Sometimes within the brain's old
ghostly house,
I hear, far off, at some forgotten
door,
A music and an eerie faint carouse
And stir of echoes down the
creaking floor.

      --   Archibald Macleish, "Chambers of Imagery"1

Hawkwife's mother -- my mother-in-law -- passed away December 19th, 2007, at the nursing home where she had lived for less than a year. I affectionately referred to her as "Mumsie" and had served as her primary caretaker from the day Wifey and I married until the time we moved her into the nursing home. Truth to tell, I continued the role even afterward, working to ensure due diligence in her care and facilitate understanding and communications between Mumsie, the staff and us.

The house felt quiet, somewhat empty, when we moved Mumsie to the nursing home. I felt somewhat empty, somewhat relieved, and a little as though I had betrayed not just a friend but a person who had grown to depend upon me to be there to help her.

There are so many ways to second guess the decisions one makes in life, regardless of whether it pertains to something major or minor. With major decisions -- those which impact not just your life but the lives of others -- the tendency to second-guess can explode exponentially into a multitude of "what-ifs" and "if onlys" until the mind and spirit strain under the weight.

We were spared some of this.

Some of it.

We missed Mumsie, but were no longer able to care for her at home without assistance, and we didn't qualify for the assistance we needed.2 It was the best thing we could do to ensure the high level of care we'd established for her, albeit at a cost of a level of interaction that I still regret today.

In the aftermath of her passing, as days stretched into weeks and the weeks into months, we've come to believe that she gently lingers with us in both memories unbidden and incidents of awkward recognition -- her life spirit, echoing through the halls of body, mind and abode. It is a reassuring feeling, comforting on several levels even while a touch spooky and otherworldly.

"As I Lay Dying..." -- A Farewell to Mumsie

The following is a stream-of-consciousness text that began next to Mumsie's bedside in the nursing home as she slowly passed from this mortal coil we know as life. My wife ("HawkWife") and I are the sole narrators.

There are no further pictures in the main content.