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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: 

Missing "Woo" -- Family/Pet Remembrance Thread

Crossposted to DailyKos. Bumped and promoted. Originally posted 2010-11-07 10:50:39 -0500. -- GH

Missy the Malamute -- aka "Missy Woo" aka "Missydog" aka "Woo" aka "Woo-woo Girl" -- has been gone several years now, but we miss her presence every day. When I came across this tearjerker story about a dedicated dog who, 5 months after his owner died, still waits by the side of the road for his return, my memories of Missy and her phenomenal level of both dedication and intelligence came flooding back even more strongly.Hat-tip JRichards33 of DelphiForums Below the fold is one story of Missy's loyalty, and how -- in spite of that -- she was still an outspoken dog. Feel free to share your own story of dedication, loyalty and love in comments.

This remembrance is dedicated to all who have known, loved and lost special pooties and woozles, as well as those who still have their amazing pets to learn from, grow with and share their lives with.

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.

Quick Update

Hey folks, just a quick update on why I'd suddenly gone scarce. I had a few issues crop up that directly challenged my capacity to be online for the better part of the past two weeks, both physically as well as time-wise.

Aside from a tax issue that cropped up and had to be dealt with, I'm also just completing my dealings with a minor computer revolt (mine, which is nearly resolved but which had gotten to the point where it became increasingly unusable over the past 2 1/2 weeks, to the point where it has been virtually unusable for most of the last week, plus several other family machines -- Wifey's, which was the least impaired and from which I was able to occasionally hop on to keep in touch, plus my father's and one of my brothers' machines).

On top of those fun factors, I've dealt with some client issues and -- the capper -- a recalcitrant lower back that went out right around the time my computer started to get really wonky. Two weeks ago, I could sit for short periods but -- if I sat too long -- I couldn't walk when I got up.

Health Series: The Lost Decades

Cross-posted at Tikkun Daily and DKos

I'll bet you think I'm going to write about the decades between when we first tried to pass health care reform and now.


Reflecting on the title, you're probably thinking back through history to Johnson, or Truman, or FDR, or Teddy Roosevelt. There are a lot of wasted years between then and now, I'll grant that. There have been many words said about health care, many promises made (to Carter, to Nixon...), many broken as easily as the brittle bones of an osteoporosis patient, and with just as much pain to the American people, who have lost more and more each decade to the monster that has occupied our health care system.


You may be thinking, too, of something like Japan's "Lost Decade" and thinking there's some sort of corollary there between title and subject.


Weekly Healthcare Series: When Health Care Works -- by Evelette

Cross posted at DKos and Tikkun Daily

 My journey starts with the basic advantage of working as an R.N. in a small, rural, non-profit clinic here in New Mexico. Our CEO is a totally enlightened woman who used to run Health care for the Homeless in Albuquerque for about 5 years.

 She was instrumental in getting our staff enrolled in a small pilot program for state insurance coverage for low income folks that was quietly rolled out by Bill Richardson last year. It was quiet b/c they were afraid the whole project would be overwhelmed immediately, which it was. The 100,000 slots were filled faster than the paperwork could be printed. I never paid more than $7.00 a pop for 2 surgeries, MRI's, needle biopsies, ultrasounds and home nursing. I Don't think I've even spent $100 so far.

Health Care Series: This will make you weep

Promoted. Originally posted 2009-06-25 21:03:17 -0400. -- GH

Come over here for a moment. I’m going to lift the curtain on a private world, a world I hope you’ll never have cause to inhabit. Take a glance at this world and the people in it. This is the world of dialysis patients and their families.

What you are about to read is not at all uncommon in the dialysis community. We (dialysis patients) often give each other this sort of advice. I am partly prepared, when my own time comes, to divorce the one I love and go on Medicaid myself if I have to. It may be the only way I can get health care once I max out our employer insurance, the one with the $2 million cap.

The names I use here are real. The people are real. The words are their own, appeared on a dialysis patient email list, and are quoted with permission. Their zip codes, also used with permission, are real. Their stories will make you rage, and break your heart.

What difference? A day, A year, A lifetime, PART 2

 Originally posted 2009-04-24 06:55:35 -0500,

 It was, after all, the one truism that I knew to be absolutely true, namely that everything good goes bad, everything alive dies and everything gained will be lost.

Somehow we moved from my clinical trial to my first real successful HIV treatment regimen with a few stops along the way.  I said I'd pick up exactly where I left off last week, so here we go...

When I was an undergrad, I took a poetry course focusing on the Black Mountain poets, especially the four most famous ones (Charles Olson, Robert Duncan, Robert Creeley and Ed Dorn).  It had to have been one of the most challenging and difficult and ultimately rewarding of my classes that semester, as I eventually took three more classes taught by the same prof in the same general vicinity of contemporary poetry.

What Difference Does a Year Make? -- part one

a moving work by dadanation - bumped --sd

As of April 16th, 2008 all I knew for certain was that I could provide no one with any information about my health with any certainty.  Oddly, living under the perpetual cloud of one step forward, one step back was not only familiar but oddly comforting for me.  It was, after all, the one truism that I knew to be absolutely true, namely that everything good goes bad, everything alive dies and everything gained will be lost.  

Blue Willow

<Update: Ramara just joined ePm. Originally published 2009-03-18 09:25:35 -0500This is now being posted under her name, but as I originally edited it I am leaving the intro as was. Welcome Ramar! carol>

Ramara will be posting with us directly in future, but this time she asked me to post this for her. Here are two posts which appeared first on Daily Kos (the most recent on Mar. 15, 2005, with a link to the earlier one. With her permission I am posting the first one which is linked in the most recent commentary so that our readers can be fully tuned in.

Health Series:  Fetal Alcohol Syndrome

Saturday my son will turn 24.  He lives in a group setting here in Tucson, receives SSI, and I don't know if I will hear from him so we can do something to celebrate.  He receives case management through the mental health network, and that treatment is court ordered.  The court order expires next month, and I worry that his treatment providers will not seek to have it renewed for another year.  Last time he was not committed, he spent most of his time living on the streets.  Occasionally he was in jail because he missed court dates or violated the restraining order I have.  When he was in jail I breathed easier because he was off the streets.  He needs the structure of the court commitment and the restraining order in order to function at all.

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.

Easter Vigil: Remembrance

I posted the following as a comment in the recent DailyKos diary You Are Not Alone by noweasels, but thought it was thoughtful enough to also post as a separate piece -- please also read the piece by noweasels, and thank her for the inspiration.

The rest of what follows below the fold is essentially the entire comment -- two personal submissions for remembrance today that I submitted, plus a parting thought.

...if you're still with me, then jump...

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