Filed under: 2nd Amendment, Alzheimer's, Ballistics, Guns, Health, Hospice, Sleep
Sorry I haven’t posted much the last couple of days. Honestly, I am in a funk – the sort of deep-seated inertia which comes after completing a protracted project. On one level, it is just the downturn from the ballistics testing. But more, it is the still lingering exhaustion from care-giving.
Which is not surprising. You can’t expect to recover from years of poor sleep and intensely caring for someone else 24 hours a day in just a few weeks. Particularly not when we’re still very much dealing with resolution of the estate (strangers are here right now going through things, giving us estimates on the value of some items) and trying to play catch up on professional and personal obligations. We collapsed immediately following the memorial service for Martha Sr, but then tried to pretend that we were recovered, to get on with the life which had been put on hold for so long.
But now it feels like it is catching up with me again. Like how a battery can get a ‘surface charge’ quickly, but also wears out again quickly. I need a prolonged period of recovery and recuperation. That, however, is not likely to happen. There are books to repair, bills to pay, years worth of things to catch up on.
So, forgive the slight break. I’m not burned out – I still have a lot to say, to do, to write about here. I’m just tired.
Jim Downey
It is enlightening, if sometimes dismaying, to discover what sorts of things motivate people. I have found that one of the most reliable ways of doing this is to see what sorts of motivations they perceive in others – what motives they attribute for a given behaviour.
Case in point: our caring for Martha Sr. I had mentioned previously that there was some discord in the family about the distribution of her estate. And what at the time seemed to be a misplaced guilt (that still may be the base motivation, actually) causing this has now manifested as a perception that we cared for her over the last five years out of some financial motivation. Yes, it seems that some thought that we did what we did in order to benefit from a more favorable disbursement of her estate.
*Sigh* This is so wrong that it took me a while to really wrap my head around it.
As I told a friend via email this morning:
Needless to say, this is not why we did what we did – honestly, no amount of money (well, no reasonable amount of money) would be sufficient inducement for me to have cared for someone like that for so long. It was done out of love – for her, and for my wife.
And I’ve been thinking more about it. Why? Because I like to understand my own motivations, and to keep them as honest and clean as possible. I’m an idealist, and try to approach the world that way, knowing full well that the world is not an ideal place and that reality will likely not be kind to my approach. When my motivations are questioned, either directly or by events, I like to step back and reconsider – and will make changes if necessary to insure that my motives are clear.
We were favored by Martha Sr. in her will. Not to a great degree – the value of it was less than I could have earned in the intervening years, had I been working rather than caring for her. And it was considerably less than would have been spent on either hiring full time care-givers, or moving her into a nursing home for that time. But because this additional benefit was there, some made the assumption that this was our motivation for caring for her. And this has caused the discord mentioned above.
So, after discussing the matter with my wife, we’re going to wipe out the benefit, just split up her estate equally and without consideration. It is not worth the grief. We didn’t do what we did for money or property – we did it because it was the right thing to do, and we could. Removing the benefit should resolve in anyone’s mind what our motivation was.
Everyone grieves in their own way. We may have wiped the slate clean, but that doesn’t mean that the grieving process is over. Not by a long shot. There are still sympathy cards on the mantelpiece. There is still a sudden slight panic over where the monitor is when I forget for a moment that Martha Sr is gone. There is guilt over the times we failed in some way, and joy over memories of happy moments Martha Sr had even in those final difficult days. And there is a profound gratitude I feel in having experienced this role of being a care provider.
I think that I am richer for this experience than others who have not been through it. I sometimes wonder whether the tendency to put people in nursing homes is partially done out of a fear of grieving – to create a distance from a loved one who is reaching the end of life, and so to mitigate the pain of loss. If so, those who take that path have indeed curtailed the amount of pain that they would feel, perhaps even cut short the time needed to completely grieve. But they have also cut themselves off from a remarkable human experience.
Jim Downey
Updated, April 13: I cross-posted this to dKos yesterday, where it generated some interest and discussion you wish to also see. You can find that here.
JD
Filed under: Alzheimer's, Bipolar, Blade Runner, Book Conservation, Daily Kos, Depression, Hospice, movies, Weather
Seems a bit ridiculous for someone 6’2″ and pushing 250 pounds to be “feeling small”, but that’s about the best characterization of my emotional state today. Bit of a headache, some intestinal issues – not ‘sick’ exactly, but just under the weather.
And what weather. What was mostly sunny and near 70 yesterday and Saturday is cold, grey, wet and very unpleasant today. 35 for the high, sleet/freezing rain this afternoon and snow scheduled for tonight and tomorrow. The kind of day that makes the cats curl up on the radiators and refuse to budge.
Both my good lady wife and I are feeling this. I think it is just part of the natural let-down, the ebb & flow of recovery from being care providers for so long, of grieving. I cross posted this diary (with some additional explanatory material) to Daily Kos yesterday, and it generated some really good discussion. But I think it left me feeling a bit wrung-out. For the longest time I have been able to attribute any mild depression or exhaustion to the stress and demands of care-giving, but the fact remains that I do have a mild bipolar condition. I suspect that for a while things are just going to oscillate before reaching some kind of equilibrium once again.
So, take it a bit easy today. Maybe go watch Blade Runner or something this morning, then see if I can accomplish some more conservation work this afternoon. One step at a time.
Jim Downey
Last night, my wife washed off the blackboard which hangs in the kitchen.
* * * * * * *
I just got back from a quick trip to KC to pick up the first large load of books from the seminary. Simple. Got up this morning, usual routine, jumped in the car and drove to KC. Met with the client. Selected about 60 volumes to start with, wrapped them in cling film, boxed ’em up. Put the boxes in the car, drove home, pausing to check out a new store just off the highway – and amazing myself that I didn’t have to call home to coordinate the slight delay.
* * * * * * *
I sent this note to a friend:
Mostly I’ve been getting work done, at least in the afternoons. Feels good to be able to focus in and do it – a nice affirmation, and there is that joy that comes with doing something well which most people can’t do. Still struggling to shake off the last effects of the flu, which is annoying, but there is clear progress.
And that has been the real change this week. Each afternoon I’ve been able to just dive in and work. For hours. Very productively. Such a change.
* * * * * * *
It’s the little things. Yes, there are the larger changes: more sleep, no need to go around always listening to a monitor, being able to come and go as I please. Those I expected, even if they have taken some adjustment. But it’s the little things that catch you unprepared.
Last night, my wife washed off the blackboard which hangs in the kitchen.
The blackboard which for years had our contact phone numbers on it. Those were first put there by Martha Sr. years ago, when her memory was becoming undependable and she might need to call someone for help. Then they remained even once we moved in here, since both my wife and I still had our jobs elsewhere during the day. After I closed my gallery and moved home that was no longer the need, but by then they were an institution. More recently, long after Martha Sr had stopped using the phone, the numbers were there as a quick resource for the various respite care workers and whatnot, in the event of an emergency.
Last night, my wife washed it clean. It was time to move on.
* * * * * * *
Jim Downey
Filed under: Alzheimer's, Book Conservation, Firefly, Flu, Health, Hospice, Joss Whedon, movies, Predictions, Science Fiction, Serenity, Sleep, Society, Writing stuff
Last night we settled down with some dinner to watch a bit of Firefly, settling on Serenity (the episode, not the movie). At one point fairly early on, when plans have gone south at several junctures, the captain of the ship (Mal) is considering options, trying to make the best of a not-great situation. There’s this little bit of dialog:
MAL: We don’t get paid for this, we won’t have enough money to fuel the ship,
let alone keep her in repair. She’ll be dead in the water anyhow.
(Mal turns to the others)
We just gotta keep our heads down and do the job. Pray there ain’t no more surprises.
I looked at my wife, and we just nodded to one another.
* * * * * * *
We did a hard thing. And we did it well.
Caring for my MIL for years somewhat warped my perspective. First and foremost in our consideration was always what her needs were and how best to meet them. I’ve often talked about what that meant in terms of rewards and sacrifices, and I don’t intend to rehash that now.
But a couple of things have changed with her passing. First off, is the odd sense of disorientation. I’ve compared it in discussion with friends with almost having a sense of agoraphobia – a nervousness when out in the world I’ve never felt before. It’s really just a conditioned reflex, and will fade as I adjust to the lack of need to always being worried about Martha Sr.
Another thing which has changed is the need to return to something resembling a ‘normal’ life, with the usual requirements of work. I don’t mind work, never have. My life has never been easy (though it certainly could have been harder), and I’ve never expected it to be otherwise.
But sometimes you wonder if maybe it couldn’t be just a little bit easier.
Caring for Martha Sr those last weeks was more demanding, and lasted longer than anyone expected. Getting hit with the flu so hard following seemed a bit gratuitous, in the sense of the universe having fun at our expense. Both my wife and I are behind on our work, and while our clients understand, that doesn’t help the cash flow situation. I knew these days would come, and things would be a little rough for a while until we got settled again. But we’ll manage.
* * * * * * *
We did a hard thing, and we did it well.
What has come of a bit of surprise has been how some people have responded to that. There’s been some discord in the family about the disposition of Martha Sr’s possessions, borne mostly out of a misguided sense of guilt, from what I can tell. It’s really unfortunate, but everyone has their own way of reacting to death. If we’re lucky, with time the matter will sort itself out with a minimal amount of damage.
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.
Jim Downey
Filed under: Alzheimer's, Daily Kos, Health, Hospice, Publishing, Sleep, Society, Writing stuff
No, no, not downloads of the novel. That would be something. Rather, that’s the number of words I’ve written in the last year in posts here which have the ‘Alzheimer’s’ or ‘Hospice’ category tags. Why is that significant?
Because I am thinking about using those posts as the basis for a book about being a care-provider. With the feedback I got to my posts here, and those I cross-posted at UTI and Daily Kos, it became evident that there is a real interest in this topic. Because almost everyone either knows someone with Alzheimer’s, or they know someone who has a family member with Alzheimer’s, or they are afraid of developing the disease themselves.
With editing and culling of the current material, I probably have about 30,000 words done. If I supplement that material with explanatory notes and reflections, I can easily boost that to 60 or 70,000 words, which should be more than sufficient for this kind of memoir. And while my thinking on this is still rather vague, I’d probably see if I could pair-up with the Alzheimer’s Association, with some or all of the proceeds of the sale of the book going to help that organization with their research and educational programs.
It’s a thought.
Jim Downey
Filed under: Alzheimer's, Doctor Who, General Musings, Health, Hospice, Migraine, Predictions, Sleep
I was half expecting it.
As mentioned previously, I suffer from migraines upon occasion. Perhaps a bit surprisingly, the last couple of months have been fairly light in that regard. But I have one now, of the “stress-release” variety.
Last night, for the first time in the better part of a week, we cooked dinner and relaxed watching a couple of episodes of Doctor Who (more on my getting acquainted with the new series later). I had a couple of scotches, but that’s not a lot for me over the course of the evening. I fell asleep later in front of the computer, catching up on news of the world. In other words, I was starting to spin down from recent events.
I went up and went to bed, while my good lady wife did the dishes and caught up on some email. I woke sometime after midnight (not sure when) from the pain of the migraine. Got up, went and took some OTC stuff I hoped would shut it down, went back to bed. Woke up again about 4:30, pain worse. Got up and took some more OTC stuff and something stronger to give it a boost. Unfortunately, those meds include a fair amount of caffeine, so getting back to sleep was not much of an option. I laid down, let them work for a while, then got up.
It may seem odd to you that I would be suffering a stress-release migraine going into what is likely to be a fairly stressful and emotional weekend, what with the memorial service tomorrow and all. I’m fairly introverted, and the prospect of a large public gathering and all that concentrated emotional outpouring is rather daunting.
But that is nothing in comparison to the stresses of caring for someone with dementia who is dying. Even now, all my instincts and conditioned reflexes are concerned first with taking into account where Martha Sr is, who is keeping track of her, what needs to be done next in the usual care regimen. Yesterday, returning from errands I needed to run, I glanced at her bedroom window as I drove up the driveway, to see whether my wife had her up from her afternoon nap and had opened the drapes. This morning before grinding my coffee I went to shut the door from the kitchen in order to muffle the sound and not disturb her sleep. And those are just two of the dozens of examples I could cite from the last 24 hours. It will take months, at least, to set aside these reflexes, to fully become ‘free’ of the ingrained habits of years.
So, yeah, I have a migraine. Not horrid, with the meds I have in me so far, though this post may be a bit less coherent than it could be. I should still be able to play house-elf today in preparation for the visitors we will have this weekend, and to make the memorial book for the service tomorrow. If it doesn’t get a lot worse I should even be able to function well during the public outing tomorrow (I got a lot of experience with that sort of thing while I owned the art gallery). But there it is – perhaps the first marker of the real change in my life. We are, after all, born in pain.
Jim Downey
Filed under: Alzheimer's, Feedback, General Musings, Health, Hospice, Marketing, Predictions, Press, Promotion, Science Fiction, Sleep, Society, Writing stuff
I find it odd, but somehow telling, that the obit for my MIL has gotten the most hits of anything I’ve posted here previously, and as a result I’ve hit a new “best day” for the blog today. Ah, well.
The newspaper coverage of her passing can be found here and here.
* * * * * * *
And that’s not the only news about us. In a strange twist, the same issue of the Tribune which contains Martha Sr.’s obituary also has this piece about this year’s Notable Historic Properties. Which includes our home (second from bottom on that page.)
* * * * * * *
While I was being preoccupied with caring for Martha Sr. in her final days, there seems to have been a burst of activity with the novel. I don’t know if someone posted it to some websites or what, but in the last week almost 500 people have downloaded the thing. If anyone knows what is behind this, drop me a note or leave a comment if you would be so kind. Oh, that pushes the total downloads over 7,000 – thanks, everyone!
* * * * * * *
Got this very nice note from someone who had just downloaded the book and started reading it. ‘Rich’ said:
Thanks for making your SF novel available. I am now in the middle, and you’ve REALLY got my interest. This is a good thing.
I have only noticed 2 very minor technical things that I think most people would not notice, but being an engineer and trained in physical sciences, I saw them.
In the first description of the airlock on Titan, using water to wash off tholin dust would be difficult as you have described it. If the Titan atmosphere were pumped out to a vacuum, liquid water would boil off instantly, unless there were another replacement atmosphere first.
When Jon first breathes the air inside Darnell’s dome, “the usual sharp whiff of methane” – Methane is odorless, needing to have mercaptans added so we can smell it.
Like I said, these are small details, and do not detract from my enjoyment of the story.
D’oh! My response:
Well, thanks! The first can be easily changed with a tweak to the description (which is what I actually envisioned – the new ‘Earth normal’ atmo being pumped in first, then things flushed with a water rinse), but I didn’t know that methane was odorless. Huh. Silly me – it’s the same as ‘natural gas’, isn’t it?
No worries, I can tweak that by giving the tholin precipitate some kind of smell, and rejigger the text to reflect that. But I would not have caught it without your help.
See, kids – you write me, you’ll get a real, personal response! Well, sooner or later. Just because the novel has now been downloaded 7,000 times and I’m well on my way to becoming a famous and fabulously wealthy author, doesn’t mean I won’t answer my email . . .
* * * * * * *
And, lastly, thanks again to all who have commented or sent messages about Martha Sr.’s passing. It has been much appreciated by us.
Best,
Jim Downey
. . . to link to an announcement I made at Daily Kos about Martha Sr.’s passing. You can find it here. Thought you might like to know about it.
Jim Downey
The following is the obit for my MIL which will run in our local papers. After checking with my wife, we decided to go ahead and post the information here as well, even though I have through all my posts never used my MIL’s name, out of respect for her privacy. But she deserves to be now named and recognized for her long and rich life of involvement in her community and devotion to her family.
Martha Burr Bates John, 90, of Columbia passed away on February 6, 2008 at her home.
Memorial services will be held at 2:00 on Saturday, February 9, 2008 at Memorial Funeral Home in Columbia.
Martha was born on June 14, 1917 to Archie Burr and Martha Frances Breiner Bates and they preceded her in death. She was married on October 5, 1940 to Hurst John in Bonnville, Missouri and he preceded her in death.
Martha was a 1934 graduate of Laura Speed Elliot High School in Boonville and a 1936 graduate of Stephens College. She graduated in 1938 from the University of Minnesota with a B.A. in Architecture. She worked as a draftsman for noted Columbia architect, Harry S. Bill, where she met her future husband. After World War II she worked occasionally, mostly for her husband, and began raising a family. During the next 30 years she was involved in many activities relating to the family, PTA President at both Benton Elementary and Jefferson Junior High School, Camp Fire leader and local board president, Cub Scout den mother. She volunteered at Ellis Fischel Hospital for thirty years, serving at least once as Auxiliary President and was a long time member of First Baptist Church in Columbia.
She is survived by daughter, Martha K. John and husband Jim Downey of Columbia; son, John John, his wife Karen and their son, Justin all of Columbia; daughter Susan Newstead of Navarro, California; granddaughter, Miel Newstead of Philo, California; grandson, John Newstead, his wife Holly and their sons, Kai and Max, all of Navarro, California.
She was also preceded in death by her son, Lawrence Edward John; sister, Ida Frances Bates Dyer Kalb; nephew, Bob Dyer.
Tributes can be left online at www.memorialfuneralhomeandcemetery.com
Thanks to all who have sent me messages or posted comments here. My wife mentioned that some flowers would be welcome for the service, but I think we would both also welcome donations made in my MIL’s name to your local Alzheimer’s Association Chapter or Hospice organization.
I’ll be posting more, later.
Jim Downey
Communion Of Dreams 