Filed under: Alzheimer's, Bipolar, Health, Predictions, Publishing, Science Fiction
Consider this something of a companion piece to yesterday’s entry.
For some time now I have been increasingly aware of a shift, a change in the wind. From this:
But the good news is that once I realize how deeply I am into this cycle, it usually means that I don’t have a whole lot further down to go. Typically, just a matter of weeks.
Of course, hitting bottom was followed by a prolonged illness this time – a month’s worth of serious pneumonia, and then two months of uneven recovery (which I am still struggling with, though the trend is up.) Even for me, this is unusual.
But it perhaps signifies something else: a larger pattern at work.
I have been intensely ill at several junctures of my life – oh, nothing life-threatening, just really, *really* sick. And those instances tend to come at the culmination of a closing chapter in my life, following a long period of intense work. Usually, once I start to emerge back towards health, it marks a sea change. Like now.
The long years of being a care provider, followed by intensely working on the care giving book, are over. What was by necessity a period of intense introspection and even hermitage has played itself out. The stage is set for me to move on, to turn my energy and my attention outwards again.
What do I mean?
I’m not entirely sure yet. Certainly, with Communion of Dreams to be published, there will be the need for publicity. If we can also get Her Final Year into print, that will compound things, demand more of me.
And here’s the thing – this doesn’t bother me. Oh, I am still an introvert by nature, but I now feel ready to once again take on the role of a public figure.
It’s a bit like re-inventing myself. Not changing my nature, but choosing to emphasize another aspect of myself. And there is power in that.
Jim Downey
Got a nice note from an old friend, chiding me for my comment in my post yesterday. (It wasn’t from the author of the comment I was responding to.) My friend thought I should be more open-minded about how to deal with the ongoing pain I am experiencing, and should reconsider alternative medical treatment. I thought I would post my response, and save myself from having to explain the same thing to others:
My comment reflects how much of a hard-nosed skeptic I have become in the last 15 – 20 years. At the very least, homeopathy or acupuncture needs the willing suspension of disbelief from the patient to have any chance of working, and I’m just not capable of working up to that. The realities of life have just been too hard-edged for me to put faith in prayer or magical thinking.
It’s not that I am bitter, or brittle. In fact, I am remarkably optimistic and hopeful, given all I have lived through and all I have seen. But I am much less willing to invest my energy into any enterprise which doesn’t seem to be well grounded in proven reality. I look for tangible ways to manifest my hopes, and to do what I can to help others.
Communion of Dreams is one such effort – entertainment, perhaps a little dreaming to inspire, maybe with some ideas to provoke thought. Caring for Martha Sr was another, and from that sprang a book which I hope will be able to aid many others in very real and tangible ways.So I appreciate your thoughts, and your motivation, in writing. But though I may be in pain, I prefer to proceed on my own path. It is one I understand.
Jim Downey
* I don’t really need to explain, do I?
Filed under: Alzheimer's, Failure, Health, Humor, J. K. Rowling, Publishing, Science Fiction
The last couple of days have been a bit busy, a bit rough (some residual annoying pain from the pneumonia getting in the way), so apologies for the light posting.
I did just put up a post about the infinity symbol video at Sixty Symbols. But I am rethinking whether I want to continue the project of writing about each of their videos – we’ll see.
No news to share on the book fronts. Neither word from the publisher about when they’re going to print Communion of Dreams, nor any positive responses from agents about Her Final Year. Feel like I am in something of a holding pattern, and it’s frustrating.
As I have listened to the news of the different Nobel Prize announcements, I did have an odd thought: what if someday they do indeed award the Prize for Literature to J.K. Rowling? If so, I bet in the web searches that news reporters would do, my spectacular (but fun) failure to campaign for that would probably pop up. That’d be amusing. Good thing I can laugh at myself.
And so it goes. I think I’ll give the dog a bath.
Jim Downey
“Can you tell me your wife’s birthdate?” asked the salesperson.
I was there to pick up a Rx for my wife, just running an errand. I looked at the woman. “I didn’t know there was going to be a pop quiz.”
* * * * * * *
You know those online ‘security’ questions that some sites use, to make sure you are who you say you are if you ever forget a password or something? Well, a lot of times one of the options is the birthday for one (or both) of your parents.
I never choose that option.
No, it’s not because it would be too easy to look up, and therefore not a very good security question. It’s because I don’t remember.
That may seem odd. Who doesn’t remember the birthday of your parents? What kind of child are you??
I ask myself that sometimes. I probably should know this. And I feel vaguely guilty that I don’t.
But I didn’t grow up celebrating my parent’s birthdays. At least not that I remember. I may have when I was young. But most of that part of my life was wiped away after my parents died.
* * * * * * *
You’d think that after almost 23 years of marriage, I’d know my wife’s birthday. Sheesh. It’d take a real dipshit not to, right? Or it’d be an indication of a lack of attention, or caring, or love.
Right?
Well, maybe. Maybe not.
This is part of the intro from one of the “months” (November: Endgame) in the caregiving book:
In the last year or so of care giving for Martha Sr, I got sick and tired of hearing some variation of the comment “You’re a saint for doing this.”
Oh, those friends and acquaintances meant well, when they said it. So I didn’t respond except to thank them for their kind words.
But I knew I was not a saint. I did not do this out of some kind of religious belief. I did it out of simple, intense love and respect – both for my wife, and for her mother. And in doing it, I became a better person.
* * * * * * *
My sister was born on July 30. Or maybe 31. I can never keep it straight which one it was.
I remember the event. It’s one of the few real anchors I have left from my childhood.
But it happened close to midnight. And I have been confused about which day it was, ever since.
* * * * * * *
“Dates are . . . slippery things,” I said. I was trying to explain to my wife about picking up her Rx. “You know it doesn’t mean that I don’t love you, right?”
“Of course.”
She turned and went up the stairs, to shower.
“I love you.”
“I know. I love you, too,” she called as she disappeared upstairs.
* * * * * * *
“Can you tell me your wife’s birthdate?” asked the salesperson.
I was there to pick up a Rx for my wife, just running an errand. I looked at the woman. “I didn’t know there was going to be a pop quiz.”
The salesperson looked at me, with a certain amount of pity. Or maybe that was my imagination.
“It’s March 21. Or the 27. I can never keep it straight,” I said.
She wrote both dates down. “Thanks.”
I wanted to tell her that it wasn’t lack of attention, or a lack of love.
Jim Downey
That’s how many downloads of the novel there were in August. That puts the total number of downloads to 26,500. Who woulda thunk it?
Also, share a bit of other good news: I’d had some ongoing issues with complications of the pneumonia I struggled with most of last month, but I just heard that X-rays I had taken this past Monday are all clear, meaning that there is nothing serious going on. Yay!
Well, I have a Skype chat with my co-author to talk about Her Final Year, so I better get to that.
Jim Downey
(I’ve been working on the care giving book, creating introductions for each month/chapter. This is the one for October, and I thought I would share.)
Jim Downey
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
October: Hospice, or placement?
After all you have been through, after all your care giving, it has come to this: you need help. Not just a weekly break, not just someone coming in to help clean a bit, or check in on your loved one. No, you need some serious help. Because the Alzheimer’s has progressed far enough that it is clear that the end is in sight – meaning more intense care needs, increased physical problems, actual medical attention required.
What are your choices? What are your options?
Because it isn’t a simple matter of “do this, or this.” Insurance coverage varies widely from place to place and plan to plan. Government programs at the local, state, and federal levels all have their own arcane rules. Visiting Nurses associations may be in your area, and able to help. Or not. Hospice programs may exist and be able to provide care. Or not.
It’s a mess, frankly. And you’re probably now so exhausted from the years of being a care giver that you can’t make sense of it. At all. Chances are you’ll grab at whatever straw is first offered. Will it be the right choice?
There * is * no right choice. There is no wrong choice. Come to terms with that now. Or you will beat yourself up for no reason. You can only do the best you are capable, at the time. It may be hospice, if one is available. It may be placement in a full-time nursing facility. It may be something else entirely. You may have little or no control over your choices, and the decision may be made for you by external factors.
Whew – long Skype session with my co-author today. Almost three hours. But very, very productive. We got a little less than halfway through Her Final Year, but were able to work through all the issues up to that point. This will be the last major editing that this part of the book will get before we’re ready for submission. Yeah, there will be tweaks and changes still, but this will put us on the other side of the hill. We’ll finish this tomorrow afternoon.
Interesting process, using the technology this way. Working with a document jointly, in real-time, discussing as we went – pretty cool. And those who know how much I hate telephones will take it as a real measure of just how much John (my co-author) and I are alike, that we were able to do this. That’s easily the longest phone conversation I’ve had this century, perhaps in my life.
So, a bit of a break, then see if I can finish up the tweaks needed on the proposal, so we can send that off.
Jim Downey
*oh, there’s a reason for the reference beyond the content of the post. This is post #910.
Well, if you want it, that is.
See, the query last Friday attracted some interest from an agent, who said that she wanted to see a full formal book proposal from us for Her Final Year. Between getting ready for my class (which is going great, thanks), and getting other promised projects done, I didn’t have a chance to turn my attention to the proposal until yesterday afternoon. After about 8 hours working on it, I got it done – in ‘first draft’ form. It runs some 32 pages.
Anyway, I just thought that I’d make it available, if anyone wanted to get a sense of what the book will be like. This proposal contains a synopsis of each chapter of the book, along with an excerpt from each chapter. I don’t intend this to be a public document, but am willing to share with any friends or readers on a limited basis. And no, I won’t be offended if no one else wants to see it at this time. Feedback on the proposal welcome, but isn’t a requirement to look at it.
So, if you’re interested, drop me a note, or post a comment here.
Jim Downey
As mentioned, the care-giving book is coming together well. As with Communion of Dreams, my Good Lady Wife has taken on the task of finding an agent/publisher for it. To that end yesterday she asked me for another query letter to use for some contacts who wanted a slightly different presentation from the initial query letter we crafted. Here’s a bit I thought I would share, and see if anyone had thoughts on it:
Her Final Year is a joint memoir told using a 12-month format as an analogy for the Alzheimer’s cycle, where each ‘month’ represents one phase of the disease progression. The authors, two men caring for their respective mothers-in-law, explore the process of discovering and dealing with the decline of the family matriarch by interweaving their own thoughts and experiences with what they learned along the way from — and about — health insurance providers, medical professionals, Hospice nurses, social workers and nursing homes. The first part of the book (about two-thirds of the text) ends with the death of the Alzheimer’s patient, but then the second part of the book (subtitled His First Year) is the story of recovery of the men and their families from the care-giving experience, and how they were enriched by it.
Given that there are currently no memoirs from this POV, but that a growing number of men find themselves in the role of care provider, the authors hope that this book will fill a need and find a wide audience. Some people will want to read it straight through as a story of love and redemption, others will use it as a resource by finding which ‘month’ most fits their situation and looking there for guidance and support. It should appeal not just to care providers, but also to people who know someone in that role and wish to understand how best to help them. With the aging of our population, this includes the majority of Americans.
Thoughts?
Jim Downey
This morning Weekend Edition – Saturday had an interview with Barry Petersen, who has a new book out about the experience of dealing with his wife’s early-onset Alzheimer’s. The whole interview is worth hearing, and I imagine the book is worth reading, but here’s a bit that really struck home:
I thought with the live-in caregiver I’d solved the problem for another 2-3 years.
We lasted 8 months.
And this is perhaps the worst part, the most difficult part of this for me: the woman who was the caregiver, the nurse, who was monitoring both of us, said “Jan us always going to have someone to look after her. The caregiver has no one to look after the care-giver.” Then she looked me in the eyes and said “you are going down.”
My health was beginning to suffer. I almost literally walked off a cliff. I don’t mean that I thought about walking off a cliff. I mean that I almost literally walked off a cliff. I was living in a house which was next to a cliff and I thought this was a way to end the pain – was to walk off that cliff.”
His experience caring for his wife is fundamentally different from our experience in caring for my wife’s mother. The stress of being a single caregiver and caring for your spouse must be horrific, and I do not in any way want to criticize or second-guess his decision. Indeed, one of the things which really emerges from “Her Final Year” as I have been working on it is that there is no ‘correct’ decision about when or if to put a loved one with Alzheimer’s into a care facility – each case is individual, and no one can second-guess that incredibly difficult and painful decision. I just offer the interview as another insight into what the caregiving experience is like, and how it is likely to touch us all.
Jim Downey
PS – this post marks #900 for this blog. More on that, later.
Communion Of Dreams 