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Alzheimer's Disease

Testing a Widget: Amazon.com's Music widget and the HFY "A Life's Worth of Memories" Playlist

A while back, I'd written a piece called "
Stir of Echoes: Haunted Hearts and Healing Memories" where I listed a set of music tracks that reminded me of Mumsie, of her life and of my care-giving experience, and of her life with my wife.

The Problem with Alzheimer's Disease

Originally posted to Her Final Year on August 24, 2011 by John
Reprinted with permission, with a few small adjustments.

Alzheimer's Disease isn't fickle. It doesn't target just one demographic: it doesn't care how well you're doing financially, or if you're popular, or what color you paint your toe nails or if you're hairy or hairless. Anyone may find themselves either a victim or a potential care-giver.1

Ronald Reagan had Alzheimer's Disease; now WaPo is reporting that Pat Summitt has been diagnosed with early-onset dementia:2

Three months ago, Summitt, 59, the blaze-eyed, clench-fisted University of Tennessee women’s basketball coach who has won more games than any other college coach ever, men’s or women’s, visited the Mayo Clinic in Rochester, Minn. seeking an explanation for a troubling series of memory lapses over the past year. A woman who was always highly organized had to ask repeatedly what time a team meeting was scheduled for. "She lost her keys three times a day instead of once," her son Tyler says. She was late to practice. On occasion, she simply stayed in bed.

There are tests which help doctors determine the type - and stage - of dementia. For some folks, these tests make sense. For others, they may be misleading. Such was the case with Summitt, according to her son. Per the WaPo piece:

Next, she was asked, “Do you know today’s date?” She has never known the date. She deals with dates strictly on a need to know basis. Frequently, she doesn’t even known the name of her hotel — there have been so many of them, and they all look the same, and they are all called Radisson or Clarion or Hyatt or Hilton.

This has always been Summitt. She has always mislaid her car keys and forgotten where she put her cellphone. She has always juggled too many responsibilities, and obligations. For this reason, the numbers from her test results are somewhat misleading, according to her son.

When I was the primary care-giver for my mother-in-law, I also noted that the tests (sometimes as simple as asking someone if they remembered a person's name only a few minutes after being introduced) were not fool-proof:3

Part and parcel with spending more time with Georgia by her on the occasional consulting appointment and running errands with her was that we established a better understanding of each other. One of the perks of this was helping her cope with her memory and mental lapses. I encouraged Georgia with clues and triggers to help her remember things like names. The neurologist's name -- "Dr. Penny" -- was one example. I placed a penny in Georgia's hand while we waited for him, after the second time she asked me his name. A minute or so later, I asked her the doctor's name. She looked at the penny in her hand and smiled. "Dr. Penny," she replied with a grin. When he entered, she didn't need to look at her hand. In fact, I think she'd pocketed the penny by that point. But she did remember his name.

This was one of those doubled-edged sword things. The blade cuts both ways -- my helpful "hint" to Georgia to help her alleviate the stress of not remembering the doctor's name and help her feel more at ease likely factored into the doctor's evaluation, as from his perspective Georgia was able to recall his name w/o assistance.

I didn't really think of that at the time.

Continuation of this thought... Folks suffering from dementia, particularly in the early stages, do a lot to try and compensate as well as hide their affliction. Caregivers, in spite of the best of intentions, may be enabling a form of denial in some ways -- that was the thought I was trying to articulate above, wondering if my assistance to Georgia to help her with the doctor's name was just one way of potentially helping her hide her symptoms, even though it was also a positive reinforcement of my role / relationship with her as caregiver/protector/assistant etc.

Sometimes, in our efforts to be helpful, we may thwart some of the simpler yet rudimentary tests that doctors use to establish the parameters necessary for a diagnosis.

It's one of the additionally frustrating things about finding oneself in a care-giving role: can your efforts to help the loved one also impact - possibly negatively - the ability of doctors to develop an accurate medical picture in order to make a proper diagnosis?

A crucial factor that goes hand-in-hand with this is the issue of communication. Not just between doctors and care-givers, but also doctors and patients, patients and care-givers, and all of the preceding in various combinations as they need to communicate with family, friends, legal assistance and social workers or state & federal employees.

Sections: 

Her Final Year: Alzheimer's Disease, Care-Giving and Care-Giver Recovery

Many of you may recall that I was the primary care-giver for a victim of Alzheimer's Disease - specifically, my mother-in-law who I affectionately referred to as "Mumsie." I wrote a few pieces that appeared here on ePluribus Media as well as other places, often sharing thoughts / feelings and happenings about the ongoing experience, or reflecting upon it after her passing in December of 2007.

Some of you may recall that I mentioned working with someone to co-author a book about the experience.

Well, the book is complete. It's now available via Amazon.com in both print and Kindle format. It's Her Final Year: A Care-Giving Memoir.

We think that anyone facing prospect of - or currently engaged in - the care-giving role for a loved one suffering from Alzheimer's disease may find the experiences we relate within to be of use and interest. If you know anyone who you think may benefit, please pass along new of our book and the website URL (herfinalyear.com).

Thank you.

 

Sections: 

Her Final Year: A Memoir

It's now official. My co-author Shadan7 and I, along with our wives, have decided to self-publish our book about our experiences caring for our respective mothers-in-law as they slowly succumbed to Alzheimer's Disease.

The book's title is Her Final Year. Why that title? Because it fits - in several ways. Particularly if you regard the "year" as a metaphor. I'll excerpt from the link above, as Shadan7's explanation for the metaphor sums it up nicely:

The idea for the book – the metaphor, if you will – is that you can consider Alzheimer's progression and impact on a life as something of a whole. Just as the seasons progress, just as the days and weeks and months follow one after another in a fairly seamless manner through the course of a year, so does the disease advance. January starts with hope for a new year, in December you're looking back at how things actually unfolded. You can predict, in general terms, what the weather will be like from month to month – but you can still have a glorious sunny day the week of Christmas, just as you can have a grim and cold weekend in September.

Likewise, someone suffering from dementia can have good days and bad days, even as the general trend of the disease moves relentlessly on to a known conclusion. Furthermore, in no two people will the disease progress in exactly the same way.

Therefore, in order to make our book the most useful to other people, we've arranged the "months" according to the general progression of the disease, and then we've placed individual entries – drawn from email correspondence, blog posts and Live Journal entries – into the "month" where it most seems to fit. There is a general tendency for those entries to follow an actual chronological progression, but it happens that sometimes they don't match up that way. In addition, things are time-compressed: the actual experiences we’re relating happened over roughly four years, but in order to make the most sense of them they've been fit into this one-year framework.

Hence, Her Final Year. Incidentally, the last third or so of the book is a whole other section titled His First Year, dealing with the impact of the caregiving and subsequent recovery from it.

 

Sections: 

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.

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