The Columbia Daily Tribune did a feature piece today about Alzheimer’s, tying a presentation by a local researcher to the experience that my wife and I have had in caring for her mom. Nothing really new in it, for anyone who has read my materials here, but I thought you might find it interesting to get another perspective on the matter. I think she did a good job with the piece.
A note: while I wrote a regular column on the arts for the Trib until the first of this year, I did not know the reporter who did this piece prior to meeting her for an interview about this story last Tuesday.
Jim Downey
Filed under: Alzheimer's, Artificial Intelligence, Augmented Reality, Expert systems, General Musings, Health, Hospice, Predictions, Press, Science, Science Fiction, tech, Writing stuff
Several quick items this morning…
First off, last stats I saw (yesterday morning), over 5,400 people have downloaded the novel. That’s like 1,200 this month alone. Yay!
Hits to this blog have also continued to rise – over 5,000 so far. So have submitted spam ‘comments’, of course, now over 2,000. Glad that the filtering software catches the vast bulk of that stuff.
A friend sent me the current issue of the American Ceramic Society Bulletin. Unfortunately, items he wanted to share with me are not available through their site, but with about 10 seconds of searching, I was able to pull up more complete information on the two things I wanted to mention. Sheesh – when will people figure out that hiding basic information behind a subscription firewall is not only pointless, but aggravating to the average person? Now, rather than linking to their content (and increasing their traffic/exposure/possibility for advertising), I’ll link to the other sources.
First of these is about the latest developments in transparent transistors. This is the thin-film tech I stipulate for the best computers in Communion of Dreams which are not based on the superconducting Tholen gel.
Second is how scientists have discovered a way to embed silicon nanowires right into living cells without causing damage to the cells. This is the basis of the mind-machine interfaces that I use for the computer and communications tech in Communion, though I don’t go into the details of it in the book.
In both cases the tech is further along than I had expected when I first wrote the novel, but it is good to see that my predictions about how things would likely develop were on track.
Lastly, there will be a newspaper feature about my wife and I caring for my MIL in the local paper this evening. I’ll post about it with a link probably tomorrow.
Jim Downey
The last couple of days with my MIL have been relatively calm. Given her behaviour on Monday, my wife and I have settled on a TIA as being the likely culprit, though of course that’s a non-medical opinion.
One odd thing we’ve noticed, though, is that particularly in the mornings after breakfast, while my MIL displays a marked tiredness, she’s been reluctant to take a nap. This is new – for the last couple of months a nap in the morning has been fairly routine for her. When we ask her after getting her dressed whether she would like to have a nap, it’s almost like she is fearful of the notion. She says that she’s worried about when she’ll get up, and how to call for help, et cetera. But there seems to be more to it than that.
In talking about it this morning following another such episode (my MIL did finally opt to have a nap), my wife suggested that perhaps she (my MIL) is actually concerned that she’ll go to sleep and not wake up, but that the idea of that hasn’t been formulated solidly in her mind. I have to wonder whether this is an unconscious awareness of her approaching death.
And here we run into one of the biggest problems in helping someone with dementia at the end of life – the difficulty in helping them understand what is happening, of allaying her fears. With someone still in full possession of their mental faculties, you can discuss what is happening either directly or indirectly, suss out their concerns, help them come to terms with it. My MIL doesn’t have the ability to process such things any longer, and to try and penetrate her mental fog with a clear message of an impending death would just be cruel; it would pointlessly and needlessly frighten her, without giving any sort of comfort or peace of understanding. All we can do is provide her such love, safety, and reassurance as we can, as we all stumble along this unknown and unknowable path.
Jim Downey
Filed under: Alzheimer's, Bipolar, Depression, Failure, Health, Hospice, Sleep, Writing stuff
This is pretty raw. I reserve the option to amend or delete it entirely later. [9/18 7:15 AM: I’ve added a postscript – see below.]
I’m worn out. I’m emotionally and physically bankrupt. I’m spent, empty. Just a dry husk.
It was a *very* long day. Started with the migraine I mentioned in my previous post. Then care-giving was really rough. Worst it’s been, and that’s saying something. I don’t know whether my MIL had another little stroke, or is fighting an infection, or is approaching the end of her life, but damn – every fifteen to twenty minutes today I had to go tend to her, see what she needed. It was always some variation on the theme of her “needing to get ready to go home”, or wanting to “look outside to see if her ride is here,” or “needing to call the people she usually lives with in order to let them know that she was here”. I tried everything I know or could think of – distraction, answering questions, asking questions, reassuring, re-directing, lying outright – and nothing, nothing, would stick. Ten or fifteen minutes after I had gotten her calmed down or focused on something else, or whatever, she’d call again.
And this, of course, on a day when I was really trying to concentrate, punch through the mild migraine, get some conservation work done. Some rather delicate conservation work, at that. Work which had been promised to a client two weeks ago.
And, of course, my wife had a thing this evening that she had to go do (my suggestion that she do so – no fault to her). She got home after I had my MIL tucked in to bed and was working on the dishes.
And as I stood there at the sink, washing the dishes, thinking favorably on the option of having a heart attack, it sunk in that I was done. I mean, I’d been considering that a heart attack might be the best solution to my problems. Yeah, a heart attack. Hell, at 49, I’d probably survive it. It’d come as no surprise to anyone, given the kind of physiological and psychological stress I’m under. No one could blame me for no longer being a care-provider for someone with Alzheimer’s. Hey, it might even get someone to think about noticing my writing, since a tragic character (whether alive or dead) always gets more notice as an artist than does someone who has their life, and their shit, together.
So, that was that. I looked my own failure to continue right in the eye, and told my wife. I can’t continue to do this. I can’t deal with another day like this. Maybe later, but not now.
I thought earlier that I could do this indefinitely. But it has gotten so much harder in recent weeks. I don’t like to fail at something. I don’t like to set aside a job before it is done.
But it beats having a heart attack.
Postscript:
Like I said at the outset, that’s pretty raw. And I’m going to leave it as is, though following 8+ hours of sleep I feel better and have a different perspective on things.
This is one of the functions that this blog serves for me: being a form of therapy, allowing me to express things in a way that allows me to vent and get some perspective. I get it off my chest, so to speak.
And it serves another, related purpose: to help others understand just how difficult and demanding it is being a care-provider for someone with dementia, to share with other care-providers my stories as a form of support. And here, I am talking about those who choose to be care-providers for friends and loved ones at home. Professionals who do this, God bless ’em, do not have the same perspective: they get to go home at the end of their shift (or even their double shift, in rare circumstances). Doing this at home means you never get to leave.
I am by no means a ‘weak’ person. Not physically, not intellectually, not emotionally. And yet you can see what effects the constant, unending wearing has on me. There’s a good reason why care-providers suffer huge stress-related illness, including, yes, heart attacks.
As I said, this morning I feel a lot better. The migraine is just wisps and echoes, and I hope it remains that way. I have this trip to meet with my new client and pick up the first lot of books, which means a couple of hours road time to allow the worries and cares to unspool behind me a bit. Just getting out of the house for the bulk of the day will help.
I do not know where we go from here. My wife and I discussed my exhaustion last night, when I told her that I was “done”. But since we were already going to change the care-giving package to allow me more time to concentrate on my conservation work in the coming months, it may be that we keep my MIL here at home and I just try and ride this out, knowing an end is in sight. (As I told the social worker for Hospice when we first hooked up, “I can sleep on broken glass for six months, if I know that’s the end of it.”)
So, no fretting – I’m better this morning. And while I cannot control what might actually happen to me vis-a-vis my health (beyond doing what I can to stay healthy), I’m no longer even contemplating a heart attack as a good alternative strategy.
Jim Downey
Filed under: Alzheimer's, Book Conservation, Comics, Health, Migraine, OOTS, Sleep
I’ve suffered periodic bouts of migraines since adolescence. I know there are some food triggers, and I know that physical and emotional stress also can start a cycle. I even have “stress release” migraines, when some particularly difficult or demanding situation is over. I know several different types and intensity of migraine, from the ones that just make you a little miserable for a few hours to the ones that make it a almost impossible to get out of bed for two or three days. But most of all, I know that modern medicine offers me no real hope of relief from the damned things, and the best I can do is deal with them symptomatically with a range of mild to powerful narcotics.
Yeah, I’ve got a migraine. Been keeping it at bay for the last few days, having sometimes to resort to the least powerful of my Rx meds. Gah. Makes it hard to get anything done, and I have a *lot* to get done – a book conservation project I promised a client two weeks ago, a trip to pick up the first installment of books for the new client tomorrow, interviews with a reporter about being a care-provider, et cetera. Charming.
But at least OOTS is back from hiatus!
Jim Downey
Filed under: Alzheimer's, Art, Book Conservation, General Musings, Google, Heinlein Centennial, Peter Diamandis
Yes, I should write about the Google X Prize. I’ve even met Diamandis, at the Heinlein Centennial. But it’s been getting substantial coverage in the media. I do have some thoughts beyond “that’s cool” – but am, I think, understandably preoccupied with other personal matters right now. Perhaps this weekend.
OK, things are still sinking in, vis a vis my post yesterday. To a certain extent I feel like my life has just undergone a paradigm shift, as nothing has really changed and yet I see most things in a different light altogether.
A couple of friends have been a little surprised at my wariness about this change. I guess that I have been so conditioned at having people not do the right thing that I am somewhat stunned that this institution is going the right direction with this collection. And, honestly, I’m not used to the notion that things might be going the right way for me, as well. But I meet with the head librarian next Tuesday to iron out details and get the first installment of books, so it really looks like this is going to happen.
I’ll need to make some actual changes in how I work. Since closing the gallery, I’ve been fairly casual about my work hours and the ‘business end’ of the business. I think that’s understandable, since my primary concern has been caring for my MIL, not being a conservator. So I need to lay in some additional supplies, get a large fireproof safe, sort out my accounting software, streamline some of my work habits, establish standardized tracking procedures for handling this volume of work, et cetera. All stuff I know I can do – I ran an art & framing business which had multiple employees and scores of artists we represented for five years – it’s just a matter of getting all the procedures and software set up properly.
So, while I still feel astonished, and pleased, I’m less frightened. Typical for me: I can face just about anything, so long as I have good information and the freedom to sort it out and come to terms with it.
Jim Downey
Filed under: Alzheimer's, Book Conservation, General Musings, Hospice, Predictions, Society, Writing stuff
Well, that’s a bit of a surprise. More than a bit, to be honest.
I wrote back in May about meeting with an institutional client concerning a large collection (some 7,000 volumes) they had recently acquired, and how the initial expectation on the part of the administration at this institution was that all the books needed to just be rebound to look pretty. I mentioned that my suggestion of proper conservation treatment was completely foreign to them, and that I really didn’t expect that they would want me to do the work for them.
Well, I guess the conservation treatment I gave the three books I worked on as an example of what I do changed their minds. Because I found out this morning that they want me to do the work.
Frankly, I’m astonished. And pleased. Also a bit scared.
“Astonished” I’ve explained. “Pleased” is probably self-evident: this is a worthy collection of significant historical works that deserves proper care, and I know I can provide that care. And this is a multi-year project, meaning some security in terms of income and planning.
“Scared,” though? Well, yeah. This means a lot of work – good work, granted, on my own schedule, but the client will (understandably) want a large volume of books cared for and returned on a regular basis. And right now I can barely manage to concentrate sufficiently to do conservation work for a couple of hours per week.
Now, they don’t expect me to start handling that volume right from the start. I had told them from the beginning that I would need to ramp-up how much work for I did them, as I met previous obligations to other clients. I didn’t tell them about the other major factor limiting my time and energy, though: caring for my MIL.
My wife and I discussed this issue when I was first contacted by this institution, because frankly there is no way I can do the conservation work at that level and still be the primary care-provider for my MIL. So now we’ll need to sit down and sort out how we proceed. I could basically swap places with my wife, in terms of my “working” four days a week and her being home here to care for her mom (she’s an architect, and with some logistical shuffling she could do a limited amount of work from home). That’s one option. We might also consider others, perhaps making more use of the services available through Hospice.
And, of course, my MIL could die this week or next and make all question of needing to worry about such things moot. But that’s not what I hope for, nor how we can plan. Rather, we need to plan as though she is going to be with us, and still requiring substantial attention and care.
So, this means change. Perhaps a little sooner, and in a different manner, than I had been thinking about recently. And change can be a little scary.
Not that it’ll stop me, or even much give me pause.
Well, speaking of such things, I have conservation work that needs doing . . .
Jim Downey
Filed under: Alzheimer's, Book Conservation, Feedback, Flu Wiki, Promotion, Publishing, Writing stuff
Brief note – thanks, I think, in large part to folks from the Flu Wiki, I’ve had over 600 downloads of the novel in the last 36 hours or so. That puts the total downloads over 5,100.
I guess I really should get off my butt and contact some agents again. Too bad I’m exhausted – my MIL had a rough night of it (I was on call), and I have a backlog of conservation work to catch up on.
But I thought I’d share the good news. Maybe more later today – right now I need a nap.
Jim Downey
“When does this plane land?”
“Mom, this is your home. Not an airplane.”
“Well, I don’t want to lose my glasses. I’ll need them.”
“I’ll make sure you have them.”
* * * * * * * * * * * * *
My wife and I have both noticed a lot more “journeying” reference from my MIL in the past few days. From such things as above, to stories of people waiting for her to return, to news that she is going “on a trip”.
Yeah, that’s probably right.
* * * * * * * * * * * * *
There’s a phenomenon familiar to those who deal with Alzheimer’s. It’s called “sundowning“. There are a lot of theories about why it happens, my own pet one is that someone with this disease works damned hard all day long to try and make sense of the world around them (which is scrambled to their perceptions and understanding), and by late in the afternoon or early evening, they’re just worn out. You know how you feel at the end of a long day at work? Same thing.
So we usually don’t worry about it when my MIL gets hit by this. Still, it’ll catch you completely off guard if you let it.
* * * * * * * * * * * * *
We’re not yet into our first full week of being back on Hospice. And I think that it didn’t come a moment too soon. My MIL is exhibiting more and more of the common signs of an approaching death. Her incontinence (and general body awareness) has gotten a lot worse in recent days. She’s shown signs of restlessness at odd times. There are other physiological cues.
But most notably, has been talk of seeing her long-dead parents, and a sense that they are waiting for her to “go on a trip” with them.
I’m an atheist. I also have little belief in any kind of soul or ‘life after death’. I try and be completely honest, yet not obnoxious about my beliefs. Yet when the other day my MIL looked at me and said that she was worried about her parents missing her, I told her that they left a message for us to care for her until they came to get her.
“To take me with them?”
“That’s right.”
“Up to heaven?”
“Yes.”
Why did I say this? Because she smiled happily at me when I did.
* * * * * * * * * * * * *
I think we’re all getting ready. Ready for her to die. And I will be relieved.
No, I’m not being morbid. Or cold. Or selfish. I’m being honest.
Yes, this has been a long and difficult journey, and as I’ve said, I will be glad to be on the other side of it. I’m deep-bones weary. But that is not really why I will be relieved at her passing.
No, I will be glad to see her freed from the pain. Not just the physical pain she suffers from her various health issues (though we do a pretty good job of palliative care, thanks to her doctors and our attentiveness). But rather the pain of confusion, and loss, and fear she suffers due to the dementia. There is only so much we can do to allay that particular pain, and with each passing day it gets a little bit worse, eclipsing her ability to cope while leaving her with a very fundamental fear.
‘When does this plane land?’ Soon, I hope – soon.
* * * * * * * * * * * * *
Jim Downey
(Cross posted to UTI.)
Filed under: Alzheimer's, Failure, General Musings, Health, Hospice, Publishing, Religion, Sleep, Writing stuff
After she finished doing the nursing assessment of my MIL, I escorted ‘Missy’ from the Hospice agency out to her car. We paused just outside the back door, and she looked at me. “You guys are really doing a great job as care-givers.”
She probably tells that to all the people they work with. It’s likely in the manual.
But you know, it was still good to hear.
* * * * * * * * * * * * *
Every one of family and friends we’ve told have been very supportive. “Glad you’re getting some help.” “About time you were able to find a good Hospice.” “Good that you can have some support.” “Maybe now you can get some regular assistance, even some more respite care in each week.”
But you know, it somehow feels like failure. Like we’re giving up, giving in, saying “we can’t handle this any more.”
I always knew this time would come. Just as I know that someday my MIL will die. Well, part of me knew these things. Part of me didn’t. It’ll take some time for the emotional reality to catch up with the intellectual.
* * * * * * * * * * * * *
I found myself while on my morning walk considering what it will be like. To be able to go visit friends without having to coordinate family coming in to stay with my MIL. To not have to listen to a baby monitor 24 hours a day. To get some real sleep night after night after night. Daring to think that I might once again have a life of my own.
Really, that’s how it is. You develop such tunnel vision – everything has to be considered in terms of one objective: being a care provider. Yes, you take breaks as you can, you try and get some exercise, some sleep, eat right. Maybe even do some writing or conservation work. But all of that is secondary. Distantly secondary. Because you have to be there for the person you are caring for. It is a sacred trust, perhaps the only thing I truly consider to be sacred.
But now I start to consider What Comes After.
And it frightens me.
* * * * * * * * * * * * *
Over 4,300 people have downloaded my novel. That’s an average of 600 people a month. Pretty good for what is basically word-of-mouth. I have a lot of work ahead of me to turn this into landing an agent, getting a publishing contract. If not for this book, then for the next one, on the basis that I have at least that much name recognition, that much of an ‘audience’.
I have the prequel to write. There’s a couple chapters already done that will need to be revised. And outlines for the rest of the book to be reworked.
I have at least two patentable ideas – one firearms related, one a consumer electronics item – that I need to pursue, see what I can do to either formally file a patent, or convince the appropriate large corporation to buy the idea from me with something less formal.
I need to earn some money, pay off debt.
I need to lose a bunch of weight, get back into something resembling decent shape.
And I’m frightened. For the last four years, none of these goals has really been paramount. So it has been easy to not succeed at them, and not take it as a personal failure. Soon, I will no longer have that excuse.
Can I succeed? Can I accomplish something lasting with my life?
* * * * * * * * * * * * *
A friend sent me the “Quotes of the Day” this morning. It contained one of my long-time favorites:
There is no expedient to which a man will not go to avoid the labor of thinking.
— Thomas A. Edison
Certainly true. One only has to look around at the world to see that. So very few people are willing and able to actually think for themselves. Oh, they may believe this or that, and call it thinking. But to actually stop, and consider, and understand? That is a rare thing.
I have been chronically tired for years now. And my ability to think clearly, or for any length of time, has been correspondingly diminished. I can point to this or that instance recently when I was able to think and work for short periods, once I had a bit more sleep and time to decompress. But it is a fragile thing. And I worry that perhaps it has slipped away. . .
* * * * * * * * * * * * *
Jim Downey
Communion Of Dreams 