I’ve written many times about Alzheimer’s, and our experiences in caring for Martha’s mom. In fact, there are 142 blog entries here tagged “Alzheimer’s”.
We’re hardly alone. This is, in fact, the main reason that myself and my co-author are working on the book we are, which offers a male care provider’s perspective and experience. But one story I have followed all along has been that of Tom DeBaggio, as it has been covered on NPR. Here’s the close of that story:
Joyce (Tom’s wife) visits Tom once a week. She used to go almost every day. It gets harder and harder, she says. She’ll sit in the parking lot for a long time to get her courage up.
It’s been a long road for Joyce. She says that Tom’s friends and fans ask about him, more and more — or they’ll ask her if he’s still alive, she says.
“What’s so wrenching, there’s so many that have Alzheimer’s in their family. Or they’ve just lost someone, or someone just been diagnosed. It just makes you cry, listening to all of their stories. It’s heartening, too, that they can talk about it. It’s absolutely amazing how many people have the same story.”
The whole series is worth listening to. Heartbreaking, but worth it. Just like care giving.
Jim Downey
Filed under: Alzheimer's, Babylon 5, Failure, Gardening, J. Michael Straczynski, JMS
“Maybe I’ll always second-guess myself” said the commenter in a thread about care-giving.
* * * * * * *
I looked at the plants. Several were pounded over from storms. A couple looked to have been nibbled to death by a bunny that somehow got inside the deer netting & chicken wire.
Most of the rest looked pretty sad as well. All heirloom tomato plants, from a nursery back East I was used to working with.
“Going to replace them?” asked my wife. We were just coming back from our morning walk around the neighborhood with the dog. I had cut across the back yard to survey the garden, and my wife had joined me. The dog went over and laid down in the shade of one of our big trees.
“Some of them.” I hoped some would still make it, varietals that I still wanted to taste, to look at, to can their many colors and textures. “I’ll get five or six new plants when I run errands this morning.”
* * * * * * *
We watched “P.S. I Love You” last night.
To be honest, I just about gave up on it in the first few minutes. I’m not big on ‘chick-flick’ movies which just go for cheap emotional response with bad acting and dumb situations. And at first, it looked like it was headed that way.
But I stuck it out, enjoyed it. I am a romantic at heart, and I enjoy a movie that is both self-aware and unafraid to be emotional without being manipulative. That’s what it turned out to be, and it was worth the time. Honestly dealing with loss is fine by me – and it is too seldom realistically done in movies. After all, we all face the loss of loved ones, whether we want to admit that to ourselves or not.
* * * * * * *
At the end of one episode of Babylon 5, right as the climax of the story arc regarding the battle between Light and Dark, JMS hearkens back to another heroic figure and has his main character quote the following from “Ulysses”:
tho’
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are,–
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.
It’s a fine moment, though I’m not a big fan of Tennyson, and is perfect for the grand scope of the story that Straczynski is telling.
But I prefer a quieter story sometimes. One which is captured in small motions and simple tasks.
* * * * * * *
I selected which of the six tomato plants I would replace, and set one of the new plants next to each of the towers.
I lifted off the tower. With a tug I pulled the plant out of the ground and laid it aside.
Again using the large gardening knife I love so well, I loosened the rest of the dirt in the hole. The sharp smell of the organic fertilizer, now wet and alive, rose up with the heat of the landscape fabric around me. I reached in with my bare hands and scooped out the dirt.
The new plant, larger, healthier, greener than the ones I planted weeks ago, went into the ground. Dirt loosely packed around it. Tower replaced.
I picked up the dying plant. It wasn’t its fault. Sometimes these things just happen.
I moved on to the next one.
* * * * * * *
“I admire your willingness to write this book. My mom died in ’03 and my dad in ’06; I was a secondary caregiver to my mom and a primary caregiver to my dad. I’m still second-guessing myself on “did I do enough?” “did I do the right things?” Maybe I’ll always second-guess myself.”
I replied: “I think that everyone who does that second-guesses themselves, no matter how much they actually do. Writing this book is part of our process for coming to terms with that – our hope is that it will help make the path a little easier for others to walk.”
* * * * * * *
Jim Downey
“Alwyn? What is it, bud?”
My dog was next to the bushes beside the small porch on the SW corner of our house. This used to be a separate entrance for the doctor’s ‘surgery’, when our home was built 125 years ago. Something under the porch (which is about 4′ off the ground level) had his attention.
I went over to see what it was.
First thing I noticed were the flies.
* * * * * * *
Once I had re-defined the “months” a bit, making the mental shift for ‘October’ to be the start of Hospice/Placement in the Nursing Home, everything else fell into place pretty easily.
I wrapped up October. Actually, it was really pretty easy – straight chronological order (for the most part) of all the blog posts and emails from that period of care-giving. The only real trick was to weave the two different narratives – the ones from Martha and I caring for Martha Sr and the ones from John and Kathi caring for Georgia – together in the most natural narrative.
* * * * * * *
“Ah, hell,” I said to myself. There, under the open porch, were two very small raccoon kits. One was already dead, and had been for at least a couple of days. Hence the flies.
The other one lifted its head from its sibling’s body. Shakily, it stood and looked at me. Four weeks old, at the most.
It fell back down.
“Alwyn, sit!”
He sat, eyes still on the raccoon.
* * * * * * *
November and December were just as straight-forward. First, the month of quick decline, of saying goodbye while you still could, while it still meant something with an Alzheimer’s patient.
Then the month of passing, the end playing out in two different scenarios, but somehow the same. I guess it always is the same, really, when it comes down to it.
The only difficult thing about arranging the entries were the tears in my eyes. They made it a little hard to see.
* * * * * * *
The little kit raised its head again, just above the body of its sibling. It looked me in the eyes.
And never felt the bullet.
Alwyn didn’t flinch – my .22 air rifle is powerful, but nearly silent. I leaned the rifle against the porch, put on my gloves, and crawled in after the kits.
They weighed less than a pound each. I don’t know what had happened to the mother – I haven’t seen a raccoon around, nor evidence of one – but she had clearly been gone at least a couple of days.
But they didn’t die alone. The first had its sibling. The other had me.
Excuse me, I think I need a drink. Been an emotional day.
Jim Downey
There’s a scene in season four of Babylon 5 where Dr Stephen Franklin is feeling flummoxed by a medical problem. Brilliant as he is, he is just not up to resolving the complex task before him, and which he has been struggling with for weeks.
He gets a phone call from his superior officer, who wants to know the status of his work. Clearly frustrated, Franklin says “It’s . . . really complicated right now. I’m trying to keep it all in my head at once . . .”
I feel a little bit like that.
I’ve mentioned working on the care-giving book, and how that is progressing. Right now I’m at the stage where I am going through, attempting to find the natural ‘dialog’ which emerges from the multiple entries by my co-author and I and our spouses. As I’ve noted elsewhere, it’s very much like trying to solve a puzzle of thousands of pieces when you don’t know what the picture is supposed to be. I’m working with a rolling window of three months at a time, shuffling individual entries back and forth until things ‘gel’ into a form that makes the most sense. At present, I’m in August, September, and October – three of the largest months for entries. I’ve got individual entries printed out, clipped into sections, and laid out physically in my bindery – covering the table of my large board shear, my 5’x5′ layoff table, and in four of my large flat file drawers. It’s something like 120 individual entries all together, and like 40,000 words.
And I am trying to juggle all of these in my head at the same time, so I can relate the different entries and find that natural conversation between them. It’s like trying to do some kind of relational database in my head.
I was not trained for this. Writing a novel is tough because you have to constantly juggle all the little bits and pieces so that the plot points come out right and when you want them, the characters are consistent, and no one accuses you of pulling a fast one with some deus ex machina stunt. But at least there I was the one who made up everything, and could tweak it so things would fit. Here I am working with individual entries from four different people, over a period of about five years time. Sheesh.
And then there’s the complicating factor of how emotional this stuff is. Even being somewhat distanced from it, it triggers certain responses – pushes certain buttons.
Well, my lunch break is over. Back to it.
Jim Downey
I’ve mentioned working on Her Final Year, getting things transferred and re-organized. That process continues apace, and is going very well.
One of the things which has struck me recently has been seeing something which I hadn’t planned, but I don’t find too surprising: the structure of the book as we have set it up is reflecting the content of the book. Let me explain.
As I noted previously, the book is divided into “months”, each month reflecting a stage of the disease and the impact that it has on both the patient and care-providers. “January” is just the suspicion that there’s something wrong, “February” is detection of actual symptoms of dementia, et cetera. This way we convert the experience that two families had into a generic template which will fit anyone’s experience with the disease and care-giving.
Well, as we’ve gone through and allocated different entries relating to each “month” (entries drawn from blog posts, diary entries and email) there has occurred a striking distribution: just a very few entries in the early months when dementia is only a minor thing, the total rising until September, October, and November. These are the most intense stages of care-giving, the time when it completely occupies your life. Being in the role of care-provider is a labor of love, but it is also emotionally and physically exhausting – just as the number and intensity of the entries in those months shows.
No brilliant insight in this, I realize. But it is just one of those artistic things – a kind of ‘unity’ of design and message – which is very difficult to achieve intentionally, but is elegant when it happens.
Jim Downey
Whew – this morning I completed transferring entries for Her Final Year from the website my co-author set up so we could jointly work on it, and organizing them into files by “month” (this allows me to print out the entries and shift them around to find a good organic narrative in each month). Anyway, it was the first time that I had an actual sense of just how large a body of material we’re working with. And that material is 98,470 words in the current form – the length of a solid, commercial novel.
Now, there will be some adjustments to that total. Some editing will be done, and we still need to do the introductions for each month. Also, the entire body of the second (shorter) part of the book – His First Year, which is the recovery period following caregiving – still needs to be tallied. Even with trimming, I expect the final version of the book will still be in excess of 100,000 words – likely more on the order of 110,000 to 120,000.
No wonder it seems like a lot of work. It is.
Jim Downey
A bit of spring cleaning.
Last weekend I started in on a long-delayed project. Honestly, it’s probably been delayed at least a decade. Maybe longer.
I started cleaning the windows.
* * * * * * *
I’m almost done. Well, with the current phase of work, anyway.
I’m talking about Her Final Year. I have one more ‘month’ to go through – doing simple editing, checking for typos, familiarizing myself with the material again. I should finish that today or tomorrow.
This is how I work. It’s something like loading data into a computer. I did it with the revisions to Communion of Dreams, as well. I go through everything, carefully paying close attention. And when I’m done, and have *all* of the material fresh in my memory, I can see connections and linkages that are harder to understand when you only read it a piece at a time. With CoD, it was how I was able to keep track of the minor tweaks and changes, and how they would play out in this or that plot twist or character development – you basically see the entire text at once, almost as some kind of three-dimensional construct or sculpture. Then it becomes easier to understand what to trim, what to smooth – the classic “remove everything that isn’t the sculpture.”
But it takes an awful lot of concentration to keep it all ‘alive’ in your head like that.
* * * * * * *
I’ve mentioned before how our home is a “notable historic property.” It was built in 1883, and while it has been through a lot of changes in that time, I think the bulk of the windows are original.
Most of them on the ground floor are tall – 8′ or thereabout. With 12′ ceilings, they fit the style of the house. So cleaning them is a bit of a chore. Particularly when you’re talking about cleaning the storm windows, as well.
Here’s how it works. I have to unlatch the bottom of the window. Undo the turn buckles about halfway up. Then pull out the bottom of the frame, and lifting the window at an angle so that the top part will unhook from the hangers which support it. The storm windows are made with stout wood, and heavy glass – about 2′ wide and 8′ tall. They weigh a ton. They’re subject to getting caught by the wind. And it has to be done outside, in places where you’re lifting the thing from about shoulder height or from a ladder.
And there’s something like 30 of them.
* * * * * * *
Had a good chat with my co-author yesterday, about how progress is going on the book. He’s doing the simple edit/review of my material, as I have been doing the same of his. The next phase is to go through and identify what entries or excerpts we don’t need. Because I’ve got more time than he does currently, I’ll be doing the bulk of that, moving things into a holding file if I don’t think we need them for the correct tone of the book.
Once that is done, then we’ll go through and make sure each entry is assigned to the proper ‘month’.
Once that is done, then we’ll go through and arrange the entries within each month so that they all connect to one another in a smooth way.
Then we’ll generate the additional material we need (chapter introductions, explanatory references, et cetera).
After that, a final read-through for editing to get the manuscript in shape for submission.
We both figure another 6 – 8 weeks should do it. Maybe less.
* * * * * * *
Once the storm window has been removed, then everything gets cleaned. First, extraneous splatters and swipes of paint are removed – over the years, there has been a fair amount of this. Then thorough cleaning with a towel and glass cleaner, inside and out. Do this for the actual window, as well as the storm window.
Then remount the storm window, reversing the process described above. It takes 45 minutes to an hour to do each one, and it is somewhat physically demanding.
Ah, but the difference it makes! I’ve done half the windows in the last week, doing two or three a day unless it is storming. Now, half the house is significantly brighter, almost rejuvenated. And I can look out and not feel like I am peering through a veil, or trapped inside.
All things are becoming clear.
Jim Downey
I just sent the following message to my co-authors of Her Final Year:
I know I’m being repetitive from what I said a week ago, but the more I work on HFY, the more I am somewhat stunned at how powerful it is. I just finished “September”, and while I am exhausted emotionally, I am also filled with a conviction that this book will be a huge benefit to people.
There’s still a lot of work to do, with editing, sorting out the order of all the entries, et cetera. But now and then, take a moment and just read what is there. All our entries – the whole picture which emerges – are/is remarkable.
Time for a drink.
Jim Downey
I mentioned the other day that things were progressing on Her Final Year, the care-giving book I am working on with my co-author(s). Well, as part of that my Good Lady Wife has started looking for an agent – the idea being that now that I have one book (almost) ready to be published by Trapdoor Press, it’ll be easier to find an agent who can get this memoir to the right publisher for that genre. In the process of looking over agency websites, she came across this one: Lindstrom Literary Management.
Go take a look at their website. Poke around a bit. It’s a nice design conceit, using a 19th century book style, combined with the different marbled paper backgrounds. I could have done those marbled papers – they’re all classics, and I am actually quite good at that particular art (you can see an example on my professional bio page). I don’t know whether Lindstrom will make the final cut of agents that we decide to contact, but if we do I’ll append a note drawing out the connection between what they have on their site and what I do in that aspect of my life.
Fun!
Jim Downey
I discussed yesterday some of the emotional toll of working on the care-giving book. And last October I mentioned the working title, and explained it briefly. I’ve been thinking more about that.
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.
I don’t know if this metaphor of a “year” will make sense to everyone. But it has given us a tool for understanding what we went through, and to organize that experience in a way which makes it somewhat more universal, even as intensely personal as it actually was. We’ll see.
Jim Downey
Communion Of Dreams 