Farewell, at least for now.

Since sales of and interest in Her Final Year seem to have mostly run their course, we’ve decided to make some changes. One of those is how the HFY site is hosted, and that means that this blog will go into formal dormancy for the time being. We’re going to leave everything still up for archival reference, but you’ll find that functionality is limited.

Thanks to one and all for your support, your comments, and your sharing our story.

Jim Downey

Promoting The New Year

Since we first published Her Final Year, we’ve given away over seven thousand Kindle downloads via free download promotions. There are 15 five-star reviews and 1 four-star review on Amazon; in person and via various media, we’ve received numerous kudos.

I’ve even been stopped in person.

We’d like to see even more people get the opportunity to read the story of our experiences as caregivers for loved ones with Alzheimer’s Disease, so we’ve lowered the price of Her Final Year: A Care-Giving Memoir in both Kindle & print editions, and are offering a special promotion through midnight for an additional $2 off the print edition (if purchased through our Amazon CreateSpace store – use code ZZYCFFG2 at checkout) and free downloads of the Kindle edition.

If you know of anyone who has lost someone to Alzheimer’s Disease, or who has made – or is on – the caregiver’s journey, let them know that they are not alone. They are welcome to download a copy of the Kindle edition, or pick up the print edition at the special promotional rate, and hopefully find some small measure of comfort in the knowledge that while they may physically walk the path on their own, they are certainly not alone in spirit.

Thank you, to all those who have helped spread the word about HFY & read along as we laughed, cried, ranted & raged through the various emotional stages that our caregiving journey & recovery has taken us.

This book is, after all, for you.

December is Seasonal Affective Disorders Month

“…Georgia had begun to spend very large amounts of time watching old movies, over and over and over and over again; it was a habit that she continued during the first few months of our marriage. It was a combination of the Alzheimer’s Disease and the longstanding, long-suppressed depression she’d felt over the loss of her husband. It was definitely a warning sign, but it was also a source of comfort for her …” – From Her Final Year: A Care-Giving Memoir (get it here in print or for Kindle)

December is Seasonal Affective Disorders Month. November was National Family Caregivers Month.

Both of these National Awareness months serve as a reminders of the importance of family, the increasing number of at-home family caregivers, the rising number of people in our growing, aging population who’ll be diagnosed with Alzheimer’s Disease and/or some form of depression, and the need for a more comprehensive form of healthcare.(1)

"What do you want from me?" (said with a chuckle)When we first noticed that Georgia was having difficulty, we had seen some indicators of depression. We weren’t sure whether those were due to Seasonal Affective Disorder or something else – and some of the memory glitches (“brain farts”) hadn’t manifested enough to take special notice. Even our first foray to help determine what was happening to her, when we took her to see her former long-time doctor, was affected by the fact that her physician at the time had over-prescribed several medications for her – several were contraindicated & conflicting. That had to be straightened out before anyone could try to get a clear handle on things.

And that, perhaps, is the nub of the gist. It’s relatively easy for some to chalk up a simple off-the-cuff “diagnosis” and for knee-jerk reactions to lead to a cascade of inaccuracy, presumption or – worse – neglect. It’s important to be certain: to take the steps necessary to ensure that doctors know what drugs someone is on, what prescription & non-prescription medications (including allergy pills, cold medicines, pain relievers, vitamin and/or herbal supplements, etc.) that a person is taking which could influence their reaction to other factors & impact a proper diagnosis.

And it’s crucial to get a proper diagnosis.

It’s not always easy to plan & schedule, or arrange transportation. It’s not always affordable – for some, it’s “never” affordable. But it’s very, very important. Because healthcare is complex. Symptoms and illnesses aren’t always easy to discern or attribute. While episodes of complexity rivalling the television series “House” are (hopefully!) quite rare in the real world, there are (in my experience) a lot of people who take to the internet and attempt to self-diagnose (or diagnose others, or loved ones), often with varying degrees of success or failure. While it never hurts to try to be more informed, there are so many factors and so many potential sources of mis-information that one should always take the online information with a grain of salt and seek professional help to deal with new, different or changed behaviors.

Have the person’s medical history ready – including any medications (prescription, non-prescription), vitamins, supplements etc. – and ensure that the doctor who sees you or your loved one takes a moment to look through it. If you are helping someone who has been experiencing periods of confusion, depression, forgetfulness, apathy, etc., be sure to let the doctor know about it when you accompany that person in for diagnosis. If you aren’t a health proxy, spouse or next of kin, be sure someone who is accompanies the person and is aware of the things you’ve noticed.

Thanks for taking the time to read my bit of meandering.(2)

- J.A. Bourke

1 Personally, I’m in favor of an implementation of single-payer – the CBO studies indicate that healthcare costs alone put a substantial burden on our economy, and that the single-payer solution they investigated would substantially reduce those costs while helping many more of our nation’s families. As a nation dedicated to “insure domestic Tranquility” & “promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity” – with a dearly, clearly beloved national monument that declares “Give me your tired, your poor,Your huddled masses yearning to breathe free,The wretched refuse of your teeming shore.Send these, the homeless, tempest-tost to me” you’d think we’d all realize that building a solid foundation with a sound infrastructure “floats all boats” like a rising tide. /end mini-rant

It’s our birthday. Help us celebrate.

On July 14 – two days from now – you can download a free copy of the Kindle edition of Her Final Year: A Care-Giving Memoir. Anyone facing the onset of Alzheimer’s disease in a loved one, or who has already undertaken the journey – or know those who have – will find this useful. We’re sure of it. Caregiving for a loved one with dementia – whether Alzheimer’s Disease or not – is difficult, yet more and more families are facing this familiar challenge particularly as the bulk of the boomer generation begins to enter their “silver age.” The number of families who’ll have to tackle the issues of home care for their aging parents, spouses or siblings is going to grow, and fast.

Our book won’t solve your problem. It doesn’t give you a method or mantra that will stave off Alzheimer’s. But it does show you two families who faced, undertook and recovered from remarkably similar journeys. And it will help you gain a sense of perspective, perhaps most importantly with the realization that you are not alone with what you and your loved ones are facing.

Here’s the links you’ll need, particularly if you don’t own a Kindle:

HFY on Amazon: http://www.amazon.com/dp/B005CWN9TU

Amazon’s free Kindle reader: http://www.amazon.com/gp/feature.html?ie=UTF8&docId=1000493771

For more information, you can grab a copy of this 1-page PDF with more information: https://www.dropbox.com/s/6o7ojq4bvlengb4/2012-07-14_HFY_PromoFlyer_Final.pdf

Please help us spread the word & make our 1st anniversary of publication a success. We’re hoping that the cumulative total of downloads (i.e., combined with the total from previous promos) will exceed over 10,000 downloaded copies. To date, over 8,000 copies have been downloaded, so this is VERY achievable.

Thank you.

Gratitude & Accomplishments

The following excerpt is adapted from something I’d written online in 2008, after Georgia had passed on from this life:

Georgia: 'What do you want from me?'

Georgia used to wryly tell me that I had an answer for everything; she saw it as an opportunity to always try to one-up me. As a result, our playful banter sometimes annoyed Kathi.

I’d teased Georgia a bit on her last birthday: she’d chided me for trying to ensure that she ate food instead of candy, and said “Are you trying to keep me around forever?” She asked me how old she was, and I told her. “Eighty four? That’s older than anyone else in my family. How long do you expect me to live?” I told her with a wink and a smile that I was shooting for another thirty five or forty years.

She told me she wouldn’t live to see her next birthday.

She’s probably chuckling wryly that she was right — she loved to prove me wrong. She was always trying to one-up me in zingers and sarcasm; Kathi says it gave Georgia a challenge, and helped forge the strong friendship that we’d developed during the course of her caretaking.

She won that one; It’s one of the few losses I truly regret.

Now, looking back at the caregiving years, and the brief time I knew her before then, I am grateful for having the opportunity to meet her & to be a part of her life. I’m also extremely thankful that Kathi & I have the memories of our time with her, which also have – chronicled within – some of our best memories of our whole little eclectic family, consisting of the three of us plus Missy, Ember & Jack.

I’d never been much to favor journaling. Before the caregiving journey began, I only haphazardly kept any form of journal. As a result of the caregiving process, however, I found myself writing more & more – it was an outlet as well as a form of transcription & external memory storage. I’m not entirely sure what the original motivation was, but I am very glad to have these memories chronicled.

I’m still marveling at the strange turn of events that brought us into contact with Jim, Martha & Martha Sr., and which resulted in the creation of Her Final Year. I consider that to be an invaluable treasure, helping not only to forever record that important episode of our lives and enabling us to share it with others, but also because it brings one other dream of Georgia’s to fruition: she’d always thought that Kathi would be an excellent writer, and had expressed the thought more than once that she should write a book.

Now, she has. Co-authored with friends & family, and from the heart.

Georgia has even more to smile about now. And that, too, is a very good feeling.

The Caregiving Enabler

Sometimes, being a caregiver can be a two-edged sword – you work to build a relationship with the afflicted, your loved one, and can become so focused on helping your loved one cope with day-to-day lapses (“brain farts”) that you might also be enabling a form of denial & disbelief among family, friends or medical practitioners.

There’s one example that springs readily to mind – I’ll excerpt the entire entry from the book, here:

Penny for your thoughts

(John's diary. 5/6/04)

- Villa Rosa

Kathi, Georgia & I stopped in for lunch after taking Georgia to her neurology appointment. Dr. Penny said he wasn’t convinced that it was Alzheimer’s, suspecting that depression plays a role.

Part and parcel with spending more time with Georgia by having 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 without 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. Care-givers, 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 care-giver/protector/assistant etc.

The doctor was correct – there did appear to more to what was going on with Georgia, and depression certainly played a role. This event took place relatively early in the caregiving process, but it was one that made a lasting impression on me.

Caregivers have a responsibility to their loved ones, but that includes remembering when ~not~ to step in so that other necessary caregivers can properly evaluate their charge. Learning to mitigate oneself when helping another cope with memory issues, confusion & fear isn’t easy. It relates, too, to the oft-cited yet hard-to-maintain requirement that caregivers need to take care of themselves, as well.

It’s a tough road. The journey is a little easier if one doesn’t have to make it alone, but no matter who you travel with there should always be someone keeping their eyes on the road to gently remind you when to throttle back a bit, or adjust course ever-so-slightly.

And if you’re the only one taking the journey with your loved one, that means never losing sight of the possibility that you might might miss occasional markers & rest areas. Remembering to watch for them may help ensure that missing them won’t send you off on the wrong path, or get you hopelessly lost along the way.

A Father’s Day promotion

To date, we’ve given away over 6,000 copies of the Kindle edition of Her Final Year. I think Jim’s had similar – or very close – results with his free Kindle promotions of Communion of Dreams, as well. So, to celebrate, we’re gonna do it again. Tomorrow, on Father’s Day, the Kindle edition of both Her Final Year (http://www.amazon.com/dp/B005CWN9TU) and Communion of Dreams (http://www.amazon.com/Communion-of-Dreams-ebook/dp/B006ZCGMSQ/) will be free all day, until 12:00 pm PST.

Feel free to spread the word, and thank you!

(You don’t need a Kindle to read it – download a free Kindle app from http://www.amazon.com/gp/feature.html?ie=UTF8&docId=1000493771, register at Amazon once you get the app running or sign in, and you’re good to go.)

If you’d prefer to buy a print version, we ask that you make your purchase through the associated book websites – Her Final Year (http://www.herfinalyear.com/) or Communion of Dreams (http://www.communionofdreams.com/). The authors benefit more from such direct purchases.

I sent a book to the White House today…

I sent a book to the White House today. Specifically, I sent a copy of Her Final Year: A Care-Giving Memoir to the White House. To First Lady Michelle Obama.

At this point, you may be asking Why? After all, isn’t she busy enough? and point out the White House web page about Mrs. Obama, which indicates that she’s already got a pretty full plate – aside from being Malia and Sasha’s mom, she’s also engaged in the following activities:

As First Lady, Mrs. Obama looks forward to continuing her work on the issues close to her heart - supporting military families, helping working women balance career and family, encouraging national service, promoting the arts and arts education, and fostering healthy eating and healthy living for children and families across the country.

Well, I thought it couldn’t hurt to ask her to add one more item to the things she helps bring to the attention of the nation – Alzheimer’s Disease.


Many of you already know about the book, co-authored by Jim & I with our wives and drawing upon many blog, journal & email entries. Some of you are familiar with Alzheimer’s Disease and other forms of dementia. But how many of you are aware of just how big the Alzheimer’s issue is about to get? It’s expected to become a very big problem.

Here’s how the Alzheimer’s Association sees it:

By 2030, the number of people aged 65 and older with Alzheimer's disease is estimated to reach 7.7 million - a 50 percent increase from the 5.2 million aged 65 and older currently affected.

Bringing some more attention to it now, before it does, might help mitigate the potential (and devastating) impact.

And that’s why I thought it might be worth sending a copy to the First Lady.

*NB: We’ll be giving away free Kindle downloads of Her Final Year on Father’s Day.

Crossposted & adapted from a post of the same name on Daily Kos.


The morning after.

Quick recap of yesterday’s Kindle promotion…

Again, Her Final Year beat out Communion of Dreams, but this time the difference wasn’t as great.

There were a total of 2,757 downloads of Her Final Year, and the best ranking I saw in the course of the day was it hitting #41 overall in the free Kindle store. In addition, it sat at #1 in a number of categories related to aging and care-giving. Excellent!

Communion of Dreams also had a good day. A total of 1,993 downloads, hitting #144 in the overall ranking as well as #4 in “High Tech Science Fiction”. I’m going to have to go back and get a total count, but I think that puts us within spitting distance of 19,000 copies of this edition of the book being out there. Combine that with approximately 35,000 downloads of the earlier .pdf, and I think it is quite impressive. What’s really cool is that the 35,000 number was reached in about 5 years, whereas the Kindle edition number is for just 5 months.

I’m currently planning on doing another promotional weekend soon — details will be forthcoming. But in the meantime, please feel free to go ahead and promote the book to friends and forums — at $4.95, it’s still a real bargain.

As always, thanks to one and all who helped make this another successful promotion!

Jim Downey

The short version.

Yesterday I posted something of an infomercial-length piece about tomorrow’s big promotion. Here’s the 30-second ad version:

The Kindle edition of both Her Final Year and Communion of dreams will be free all day.

There will be a drawing for a signed paperback copy of each book (two separate drawings). To enter your name for each book, post a comment on the appropriate blog, Facebook Page, or send a Tweet to the correct account between now and Sunday morning when I check each. You can enter once per book per venue (a total of 6 entries if you entered for both books at all three locations.)

There, that’s it. At 1,095 words shorter than yesterday.

Jim Downey

(Cross posted to the my personal blog.)

But Wait! There’s More!

“Now, you would normally expect to pay $16.95 for a book of this size and quality! Just look at it! 420 pages full of the touching story of caring for a loved one! And those aren’t little trade paperback pages, either, but memoir-sized pages, each one charged with honest emotion and providing insight into one of the most challenging — and rewarding — experiences in life!”

“That’s right – you would expect to pay $16.95 for such a book – and it would be a fair deal. A modest price in exchange for access to the innermost thoughts and feelings of four people, each on a personal journey of love and self-discovery.”

“But you don’t have to pay $16.95. No you don’t. Why you can get the whole book — containing every single word, every single lesson learned — in Kindle format for the low, low price of JUST $8.99. That’s right — a huge savings, including no shipping or handling fees!”

“But Wait! There’s More!”

* * * * * * *

Shawn Colvin has a new book out, and has been doing the promotional circuit. I had the pleasure of hearing most of an hour-long interview with her this morning on the Diane Rehm show.

Colvin is just a couple of years older than I am. I can’t say that I have been a huge fan of hers, but I have been aware of her for a long time, and have always appreciated her talents. And Diane Rehm is one of the best in the business. As noted, I’d love to have a chance to have her interview me. The interview was engaging, and touching.

Because Colvin’s book is a memoir. No, not of care-giving. Not care-giving for someone else, anyway. Rather, it was about her own path to deal with her own demons. Depression. Substance abuse. Bad relationships. Anorexia. Toss in the usual professional stresses and failures, and it makes for a compelling story.

* * * * * * *

“That’s right, friend, there’s more: a *LOT* more.”

“Because not only can you get Her Final Year for the low, low price of just $8.99, but you can ALSO get this incredible companion volume: Communion of Dreams! That’s right — James Downey, one of the co-authors of Her Final Year, has also written a novel. And not just any novel — a work of speculative fiction which has fired the imagination of thousands, and prompted dozens of 5-star reviews on Amazon!”

“For such a work you would expect to pay at least $11.95 for the 350 page paperback! But it is available in the Kindle edition for just $4.95. That’s right, LESS THAN one thin five-dollar bill. Such A Deal!!”

“But Wait! There’s More!”

* * * * * * *

Fascinating story this morning about efforts to stop the spread of Dengue Fever on NPR. The basic idea was to use a known effect where mosquitoes infected with a naturally-occurring bacteria are unable to transmit the virus which causes Dengue Fever. The science in the story was good, but what really caught my attention was how the effort to get this idea to work had been a *very* long and frustrating quest for the scientist behind it.

See, Scott O’Neill had been working on this project for some 20 years. The biggest problem was technical — it is phenomenally difficult to infect living mosquitoes with the bacteria. It takes thousands and thousands of attempts, working at a microscopic level, to inject the necessary bacteria into a mosquito egg, and then having said egg develop to adulthood and actually *have* the disease. Failure is a constant companion.

And so this is what caught my ear when I heard it:

Take the day in 2006, when one of Scott’s graduate students told him he thought he’d finally succeed in infecting a dengue mosquito with Wolbachia.

I figured this must have been a red-letter day for Scott, a day of sheer elation. Scott told me looking back on it, it was. But at the time it didn’t seem that way.

“Because you’re so used to failure that you don’t believe anything when you see it,” he says. “And so you can think back to when there was a Eureka moment, but at the time, you’re probably, ‘this looks good but I’ve been burnt thousands of times before. Let’s go and do it again, and the do it another time, and check and check and make sure it’s actually real.’ “

* * * * * * *

“That’s right, friend, there’s more: a *LOT* more.”

“Because while you would think that just $8.99 for Her Final Year or only $4.95 for Communion of Dreams would be a STEAL — and you would be correct to think that! — you can get *BOTH* of these books for FREE this Saturday!”

“That’s right, I said FREE, friend. As in beer! The Kindle edition of each book will be completely and totally FREE all day Saturday! All you have to do is just go and download it. Why, you do not even need to own a Kindle in order to take advantage of this phenomenal offer! That’s right, you can get a FREE Kindle app for almost every computer, tablet, or mobile device known to man!”

“But Wait! There’s More!”

* * * * * * *

I sometimes wonder whether I shouldn’t play up my own “demons” more.

Now, I haven’t been shy about talking about them. Anyone who has read my stuff for any length of time knows this. I’m honest about my background (orphaned at 13), my failures (both recent and older ones), and my own struggles with mild bipolar disorder and health problems. Talking about these aspects of my life helps to provide some context for the things I think and do — it is all part of who I am and why I see the world as I do.

But I try not to dwell on such things. I have never considered myself a tragic figure or particularly burdened. Whether or not it was Plato who actually said “be kind, everyone you meet is fighting a hard battle” that aphorism is still very true, and my own battle hasn’t been especially more difficult than the one many people fight. In very many ways I have been extremely fortunate, and I know that. And I’m thankful for it.

But still, there is no denying that tragedy sells.

* * * * * * *

“More? How can there be More? The Kindle edition of both books are already FREE — what more could any reasonable person ask for???”

“Well, I’ll tell you what. How about a *signed* copy of the paperback edition of each book? For FREE!”

“That’s right. FREE!”

“All you gotta do is post a comment here. Or on our Facebook page. Or send a Tweet. Do any of these things between now and Sunday morning, and your name will be entered into a drawing for a FREE signed copy of the paperback! You can enter once for each book at each venue — a possibility of 6 chances in total! What more could you possible ask for?”

“So, don’t delay — enter your name, today! And remember to download your FREE copy of the Kindle edition of Her Final Year and Communion of Dreams this coming Saturday!”

Jim Downey

(Cross posted to the my personal blog.)