This morning I found her curled up in her litterbox. I’m guessing that she either got in there and was too confused to get out, or she was just too tired to bother.
* * * * * * *
We leave for vacation on Monday. Meaning, of course, that everything now is a scramble to get things done before we go. I have work to deliver to Special Collections this afternoon. My wife has a hard deadline for completing a project this afternoon, and then another bunch of stuff that has to be done before we head out for the airport.
This is, in other words, no time for a crisis with one of the pets.
But life happens on its own schedule.
So does death.
* * * * * * *
From our book, and previous to that my blog:
Anyway, Martha Sr is still hanging in there. She’s weaker, her breathing continues to deteriorate, she’s in a deeper coma than I mentioned earlier, and her fever is now 5 degrees above normal. But she is still fighting. It isn’t necessarily what I would have chosen for her, but my respect for her has stepped up another notch.
* * * * * * *
As I said last week:
That’s not to say that caring for a cat is like caring for a human. Nor to compare the two. I love my pets, and honor my responsibility to them, but when it comes down to it, they are just pets, however much I consider them part of the family.
But there is an echo, a memory of how things were some four years ago . . .
An echo. A memory. Part of the pattern of life.
* * * * * * *
This morning I found her curled up in her litterbox.
There was a mess on the floor outside the litterbox, which had also gotten on the nearby pillow which serves as her bed these days. These things happen, and cleaning it up could wait.
I picked her up, brushed the litter from her fur. She purred lightly as I held her close to my chest.
I took her in to see if she was tempted by food or drink. She was too weak to stand and try to drink on her own. I held her steady, she lapped a little water. Food wasn’t of any interest.
This is how it has gone most of the week, her getting weaker and weaker, but not in any evident pain.
I sat, leaned back, holding her. Her purr got stronger for a while, then she slept.
This may be no time for a crisis. But she doesn’t know that.
She only knows comfort, and love.
That’s what matters.
Jim Downey
(Cross posted to the HFY blog.)
Filed under: Alzheimer's, Amazon, Failure, Predictions, Promotion, Publishing, Writing stuff
As I’ve said before, traditional publishing is essentially broken. My experiences with working with a small independent publisher to get Communion of Dreams to press, and having that go screwy only confirm my thoughts on the matter. Certainly, the process of trying to find a publisher for CoD and then a year ago for Her Final Year haven’t changed my mind at all.
So it doesn’t break my heart to read an article like this:
Amazon Signs Up Authors, Writing Publishers Out of Deal
SEATTLE — Amazon.com has taught readers that they do not need bookstores. Now it is encouraging writers to cast aside their publishers.
Amazon will publish 122 books this fall in an array of genres, in both physical and e-book form. It is a striking acceleration of the retailer’s fledging publishing program that will place Amazon squarely in competition with the New York houses that are also its most prominent suppliers.
* * *
Publishers say Amazon is aggressively wooing some of their top authors. And the company is gnawing away at the services that publishers, critics and agents used to provide.
Her Final Year hasn’t yet found the audience I expected it would. Maybe it never will. Maybe it would with a major publishing house behind it. Maybe we’ll just get lucky, and get some good word-of-mouth going on it (you can help, hint, hint…).
But regardless, Communion of Dreams (my novel) has been downloaded over 33,000 times in the last four years, and by any measure that’s an indication that there is an audience out there for it. Yet my years of trying to find a publisher for it have always ended in frustration – even after I had received an offer to publish it, as well as communications from several other publishers that they thought it was an excellent book, but ‘just not quite what we’re looking for…’
So yeah, forgive me if I don’t shed a tear for the traditional publishers, and whatever services they supposedly provided. Self-publishing is the new reality. If Amazon wants to tie into that with a new model for publishing, then good – it can’t be any worse than the way things don’t work now.
Jim Downey
(Cross posted to the Her Final Year blog.)
Filed under: Alzheimer's, Failure, Feedback, Gardening, Hospice, Marketing, Predictions, Preparedness, Promotion, Publishing, Society, Travel
A good friend was visiting last weekend. We see each other fairly often, communicate regularly. But there are things best discussed in person.
“How’s your mom doing?”
“Not bad. I think we’re getting to the point where we need to have that conversation about her driving.”
“Ah. That’s a hard one.”
“Yeah. But my sister largely drives her everywhere as it is, anyway. So that will make it easier.”
* * * * * * *
I mentioned a week ago that I was surprised that Her Final Year hasn’t done better.
Well, I had been waiting for a couple of additional pieces to appear in different publications in the hopes that would spur awareness of the book, as well as sales. One of those being my college alumni magazine. Yesterday I saw that they had posted the Fall 2011 issue as a .pdf on their website, so I took a look.
It’s a blurb, not a review. You can find it at the bottom of page 39, if you want. Next to another book blurb, and one of about a dozen in this issue. My fellow alumni are intelligent, accomplished people.
* * * * * * *
After discovering that, I went out to pick tomatoes from my garden. The very wet summer we had meant that there was a big delay in a bunch of the tomato plants blooming and setting fruit. But I am lucky, since many people I know have had a horrible year for tomatoes, while mine were just delayed.
I was able to pick about 25 pounds of tomatoes, a nice mix of Lemon Boy and Brandywine and Black Prince and Better Boy. Most look great, have a wonderful taste. We had some with BLTs last night for dinner, and I made up two quarts of sauce from the ones with slight blemishes. I’ll probably go ahead and can or sauce the rest in the next day or two.
But I didn’t get to picking them for about two hours, because first I had to completely re-do the netting around the garden (about 40×50). Deer had gotten in, then tore the hell out of everything getting out.
Yeah, they munched on the tomato plants, and that was annoying. But they also ate the tops out of my habanero plants. Well, not all of them. Just the ones which had done the best.
See, as bad as the summer was on tomatoes, it was worse on the habaneros. They just started setting fruit a couple of weeks ago. And it was a race to see whether any of the pods ripened fully before I leave for New Zealand.
Now I doubt whether any of the pods will ripen. Oh, the deer stayed away from the fruit. But with the bulk of the leaves eaten out of the top, I don’t know whether they can ripen. We’ll see.
* * * * * * *
A dear friend used to always say “Live as if you were going to die tomorrow. Plan as if you will live forever.”
She passed away over 20 years ago from breast cancer.
* * * * * * *
“Still, once you tell her that she has to stop driving, things change.”
“I know.” He looked at me. “I got copies of your book for all four of my siblings. Told them to read it.”
“Thanks.”
“No, thank you – I don’t think any of them have really thought through how this is likely to go with Mom.”
“Every experience is different.”
“Yeah, but at least having *some* idea of what to plan for, what to watch for, will help.”
Jim Downey
*from this. Cross posted to the HFY blog.
Filed under: Alzheimer's, Art, Ballistics, Guns, Promotion, Publishing, Science Fiction, Society, Writing stuff
As a side-line, I’m a writer for Guns.com. Mostly what are called ‘features’ but are actually akin to a newspaper column, plus some reviews and other things now and again. I generally write about one piece a week. It’s fun, they let me write about just anything I want, and I like the discipline of sitting down to write a column of a specific length and focus as I did when I was writing about the arts for my local paper. It doesn’t pay much, but for the approximately 20,000 words I’ve written for them this year, I’ve made over a thousand dollars. And I’m told by my editor that I’m considered one of the best and most popular writers for the site, but that could just be blowing smoke. Regardless, I know that thousands of people see almost everything I write there, and the direct feedback I get is very positive. I consider the hour or two I put into writing each article to be time well spent.
So far this month we haven’t sold any copies of Her Final Year. Last month we sold 11. All told, we’ve sold about 30. That’s about 10% of what we need to sell just to break even on out-of-pocket expenses.
I’m honestly surprised by this. Oh, I know that it takes time for word to get around, that times are tight for people. Et cetera. But by about this point in time, my novel had been downloaded over 2,000 times (currently the total is well over 30,000 downloads). And that launched with less of a promotional effort than we put behind HFY, without the supporting structures of social media and forums dedicated to care-giving.
Granted, Communion of Dreams is free. But it is also just an e-book. You can’t (yet) get a paperback copy of it to keep, or to give as a gift. And while I think that it is well written, Her Final Year is a much better and more powerful book.
This isn’t meant to be a “woe is me, please buy my book” plea. Rather, it is just an observation on what is valued by our culture. Writing about firearms is. I get paid for that, and know that it is well received. Writing fiction is. Word of my novel spread widely, and it remains popular (some 636 people downloaded it last month.) Even writing about the arts was valued – my newspaper columns generated a little income, and were once again fairly popular.
Writing about care-giving? Not so much, it seems. I wonder why that is.
Jim Downey
(Cross posted from the HFY blog.)
September winds down. The leaves here in central Missouri are starting to change. This weekend Martha and I will celebrate being married for 24 years.
As the first World Alzheimer’s Month comes to a close I am waiting for at least two more publications who are doing stories on Her Final Year. There is an odd frisson, a sensation almost like standing on a cliff, looking out over a vista because I am afraid to look straight down to the river below. Is this an ending, or a beginning?
And I am reminded of this passage, originally written 5 days before Martha Sr died, now in the month of “December: Passing“:
There is something to this of that bittersweet moment, that sense of coming to conclusions you know are there, the resolution of conversations and plot lines that you get at the end of a cherished book. She no longer needs to wait for the usual markers of the day – when to get up, when to eat, when to nap. She got up this morning, and the rest of the day has followed as best we can to her wants and desires. Lunch an hour early, and including her favorite soup even though she just had it yesterday. (Campbell’s Tomato, if you want to know.) Supper about a half hour early. Bed more than an hour early. Because that is what she wanted.
Her worries we have answered as best we can, telling her that tomorrow we will see if we can help her find “the people she came here with.”
Unless she finds them on her own in her sleep.
We don’t always recognize the moments of change in our lives, or what they mean.
But sometimes, we do.
Jim D.
(Cross posted from the HFY blog.)
I posted this Quote of the Day item as a comment on John’s Facebook thread about yesterday’s “And who will that be?” blog entry:
“Beware of the man who works hard to learn something, learns it, and finds himself no wiser than before… He is full of murderous resentment of people who are ignorant without having come by their ignorance the hard way.
— Kurt Vonnegut, “Cat’s Cradle”
Why? Well, in part because John (and most other people who heard it, including me) was understandably outraged about Mr. Robertson’s statement about divorcing a spouse who had Alzheimer’s. The simple ignorance of the statement is absolutely infuriating.
But I also posted it in recognition of something else I have learned: that I haven’t learned much about Alzheimer’s.
I should not say that. I have a book to sell, after all, one that I do honestly believe can help people. I want to see that book become a bestseller. I want it to become a reference for anyone who is in a care-giving role, and an insight into what it is like to be a care-giver for all their friends and family who are unsure how to react to their situation. I think that can really help matters for all concerned. And there are millions of people who are (or should be) concerned.
So I shouldn’t say that I haven’t learned much about Alzheimer’s. It undercuts my ‘authority’ as an author. It compromises the image of trust that I should work to build in the audience. It means that I can’t pull off the idea of being an ‘expert’ in the minds of the media elite who can help to promote our book and turn it into a success.
But I can’t lie about this. In fact, it may well be the deepest lesson to come out of the entire experience of caring for Martha Sr, then working hard for two and a half years to write this book: you do not “learn” about Alzheimer’s, or dementia, or being a care-giver by going through this.
Rather, you grow.
You grow to understand that there are few universal truths about care-giving someone with dementia. Yes, there are skills you acquire, and there are some excellent resources out there that can help. And I did learn things about the disease, and good nursing techniques, and even about myself. But I am not an expert on Alzheimer’s. Nor dementia. Nor care-giving.
You grow in ways which are not intellectual. Which cannot be readily taught, or summarized in a blog post or a powerpoint presentation or a tweet. Well, can’t be summarized by me, anyway. That’s why the book is over 400 pages long, made up of hundreds of individual entries, moments of experience, built over time. It’s growth, like a tree grows. That’s not intellectual. That’s not knowledge.
So yes, in some ways I remain ignorant. And I rage when others who have not been through this experience demonstrate their own ignorance, as Mr. Robertson did the other day.
But I hope. I hope that they will read our book. Share our experience. Maybe it will help them understand, before they go through the experience, themselves.
Jim D.
(Cross posted from the HFY blog.)
Filed under: Alzheimer's, Art, General Musings, NPR, Society, Survival, Writing stuff
Saturday afternoon they announced a new “Three Minute Fiction” contest on NPR. Here’s a bit about the theme this time around:
Round 7 Rules
Your story must have somebody arriving in town and somebody leaving town.
Your story must be 600 words or fewer. One entry per person. your deadline is 11:59 p.m. ET on Sunday, Sept. 25.
* * * * * * *
Had a nice bump up in downloads of Communion of Dreams so far this month. About 270 copies already. I’ve really stopped keeping track, but that puts it somewhere about 32,000 downloads so far.
Which has gotten me thinking. After going through and preparing the manuscript to self-publish Her Final Year, I know what is involved in that. It’d be simplicity itself to set things up to self-publish CoD. Given that I haven’t heard squat from Trapdoor books about publishing the book since the start of the year, I’ve given up on that possibility.
Then again, I am very disappointed in the sales of Her Final Year, since we’ve only sold about 10% of what we needed to sell in order to just break even on the costs of setting that up. I mean, we’re talking only a couple of dozen books so far. Damned depressing, especially given how much everyone has said that there is a huge need for the book and how good it is.
So, is it worth it? Would you actually buy a copy of Communion of Dreams?
And can I actually trust that?
* * * * * * *
There was an interesting item on Morning Edition this morning, about a relatively new kind of psychotherapy in use with people facing the end of life. It’s called Dignity Therapy. Here’s an excerpt from the story:
The something that Chochenoff decided to create was a formal written narrative of the patient’s life — a document that could be passed on to whomever they chose. The patients would be asked a series of questions about their life history and the parts they remember most or think are most important. Their answers would be transcribed and presented to them for editing until, after going back and forth with the therapist, a polished document resulted that could be passed on to the people that they loved.
Chochenoff named this process dignity therapy, and for the last 10 years he has used it with the dying. And one of the things that has struck him about the processes is this: The stories we tell about ourselves at the end of our lives are often very different than the stories that we tell about ourselves at other points.
“When you are standing at death’s door and you have a chance to say something to someone, I absolutely think that that proximity to death is going to influence the words that come out of your mouth,” Chochenoff says.
* * * * * * *
I by-and-large hid from all the 9/11 memorials over the weekend.
I have plenty of experience in dealing with traumatic loss. For me, remembering a loved one who has died is important, but so is moving on with life. And I can’t do that by constantly poking at the empty place left in my heart.
I know that I am different from most people in this way. Or at least I assume that I am, based on what I see. And I’m not just talking about the 9/11 memorials all weekend.
Recently, I was contacted by a gentleman who was doing some research for an ‘online memorial’ site. He wanted some details on my father’s death, along with specifics as to his burial location and my mom’s. He was polite about it, but somewhat surprisingly insistent almost to the point of annoyance.
I found this odd, and did a little checking. Turns out this fellow is part of something I call “competitive memorializing” – there’s a whole online community of these folks, who just like trying to see how many such memorials that they can create. Not for loved ones, or people they knew, either. Just total strangers who they for whatever reason decide they should “memorialize.” Who knew?
And here’s a small confession: I didn’t have most of the information this fellow was wanting. It’s just not important to me to remember my dad that way. His body was just a shell – it was what his life was that matters.
* * * * * * *
Saturday afternoon they announced a new “Three Minute Fiction” contest on NPR. Here’s a bit about the theme this time around:
Round 7 Rules
Your story must have somebody arriving in town and somebody leaving town.
Your story must be 600 words or fewer. One entry per person. your deadline is 11:59 p.m. ET on Sunday, Sept. 25.
I have some thoughts on this, tied to the ideas of memory and memorials and the things I have said above.
Because the stories we tell are important.
Jim Downey
(Cross posted to the HFY blog.)
Filed under: Alzheimer's
Ever. I’ve lost family and friends, gone through breakups and breakdowns, been hurt and been healed. And the idea of “closure” – that something is now done and in the past, makes little sense to me. We are a conglomeration of the experiences we’ve been through, how we’ve reacted, what we’ve learned. In some very real sense, we are the scars we carry, and we should be proud of that. My good lady wife of 24 years agrees with me on all of this.
But something happened this weekend which carried with it something of the notion of closure. It was just a manilla envelope which came in the mail. From the attorney of Martha Sr’s estate.
* * * * * * *
From the introduction to the ‘month’ of April:
Martha Sr and her husband Hurst had moved into their home in the early 1950s, and had raised their family there. It is a classic 1880s historic home, and still retains a lot of the original character. She loved it, and naturally it contained a wealth of memories for her. This was the primary reason why Martha Jr and I moved into the home to care for her as she started to become frail – she couldn’t stand the thought of leaving it.
But she was also worried about what would happen to the home after her death, and on multiple occasions told Martha Jr that she wanted her to have it – her two other living children were well established in their own homes, one of them (Martha Jr’s sister) out in California. I think that she was worried that when the time came to divide up her estate, the house would just be sold and the proceeds split among the siblings. So, she changed her will to specify that Martha Jr should receive half ownership of the house right off the top, the rest of her estate then divided in three parts.
But this was a somewhat dicey move, since she was already exhibiting some signs of the effects of Alzheimer’s. Still, the long-time family attorney went along with her wishes, and made the changes.
Then over the last several years of her life, she would repeatedly ask what was going to happen to the house, and kept suggesting that she should “talk to the attorney” to make sure that Martha Jr inherited it. It was something of a fixation for her, almost to the end. We were able to tell her that the arrangements had already been made, and that put her at ease – until the next time the matter came up.
After her passing, in order that none of the other siblings felt that we had manipulated Martha Sr into making this change, we re-jiggered the allocation of the estate so that things worked out to an equitable split, while still respecting Martha Sr’s wishes that Martha Jr wound up with the house.
* * * * * * *
You’ve probably already figured out what the letter was. It was the deed to the house. Most of Martha Sr’s estate had long since been distributed – but since the value of the house amounted to most of Martha Jr’s ‘share’, and there were some legal matters which needed to be resolved (a property line dispute which we’ve now settled by buying the strip of land in question) before it could be released, we’ve been just going along on the assumption that eventually we’d actually have legal ownership of the house.
Not a big deal. Not really.
Except . . .
Well, except having a place I can call my own has always been hugely important to me. It’s a psychological quirk of mine, tied up with having been orphaned at the start of adolescence. I very literally lost my home. The aunt and uncle who took my sister and I in, God love ’em, told us to always think of their home as ours and did everything they could to make that a reality. But it still wasn’t ‘my’ home.
As noted above, my wife Martha and I sold our home here in town in order to move in with Martha Sr. For the last decade I’ve always felt like I was living in a place not my own. And while I never really expected it to happen, there were things which could have happened which would have forced us to move out with little warning. That kind of uncertainty has always weighed on me. It would be a little too much like losing my first home suddenly.
But now it is over. Just as we’ve finished getting Her Final Year published and are starting to get it out into the world.
Yeah, “closure.” I guess that’s about as good a term as possible for what I’m feeling.
Jim D.
(Cross posted from the HFY blog.)
Yeah, I remember that show. Very fun:
Very fun, indeed. Story behind it here.
Jim Downey
PS: we’ve got a 10% discount going this weekend on copies of Her Final Year.
I posted something on my Facebook profile yesterday, which got a response from someone who had cared for her parents until their deaths. Basically, she was afraid of revisiting being a care-provider by reading Her Final Year – afraid that it would confirm her fear of having been a poor care-giver.
This – *exactly this* – is one of the biggest reasons that I think that Her Final Year can be helpful even for people who are no longer care-givers. Because it shows us making mistakes, failing to do this or that right, learning only too late (or almost too late) that we should have done something differently. From the homepage for the book:
Much of the material in the book is intensely personal, even embarrassing. We have decided to share it ‘warts and all’ because that is the reality of being a long-term care-provider for someone with dementia. You will make mistakes. You will sometimes feel crushed by the isolation and stress. You will get into arguments with family and friends, and even say or do things that you later regret. You will occasionally resent, or even hate, the person for whom you are caring. We did. It’s completely normal, but seeing how others experience these things can be very helpful.
Back in February of 2008, I wrote this:
I’ve also seen others in different forums who have almost felt like they had to defend their own decisions regarding a loved one who has Alzheimer’s or some other debilitating illness leading to hospice care. I’ve witnessed those who almost seem resentful that we did what we did, because it somehow implies that they did less – that they cared less.
No. We were able to make this work out. Barely. Everyone has a different situation, and each family, each person, must come to their own conclusions, their own solutions. None is better or worse than another. Because my wife and I don’t have kids, we didn’t have to juggle that aspect of life at the same time. Because we live here in the same town as Martha Sr, and have professions which allow a considerable flexibility in terms of work hours, we were better able to adapt to providing care at home than most. Our solution worked for our situation – barely. Those final months were very demanding, and I will admit that I was pushed further than I would have thought was possible, and failed and succeeded in ways I never expected.
I will not judge another – this experience has taught me humility.
That was very early in my recovery, less than a month after Martha Sr died. As I got further away from having been a care-provider, I came to see more the mistakes that we *did* make. And I came more to understand that I had to accept those mistakes, those failures, and forgive them.
Putting together Her Final Year was part of that process for me. If you read the book, you will see those mistakes. But hopefully, you will also understand them. Because that is all part of the process of being a care-provider. Just as it is part of being human.
Jim Downey
(Cross posted from the HFY blog.)
Communion Of Dreams 