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
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
Filed under: Alzheimer's, Health, Hospice, Predictions, Preparedness, Sleep
After a long and valiant fight, my MIL passed away this morning about 5:20. My wife and I were with her.
Memorial arrangements, and further reflections on her battle with Alzheimer’s, to come later.
For now, think of her, whether in your prayers or your hopes.
Jim Downey
Filed under: Alzheimer's, Health, Hospice, Predictions, Preparedness, Sleep
OK, I shouldn’t be flip about this.
But my MIL continues to astonish. As noted previously, the woman is very strong. Our hospice nurse all but said (and this is no criticism of her or her judgement) that my MIL would likely pass last night. But she made it through. And through the morning. And through the afternoon. Late afternoon another nurse (our usual is off today) called from hospice to see what was going on – and whether we needed any help, supplies, et cetera. The hospice people have been great.
Anyway, my MIL 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.
So, predictions be damned. We’re just sticking in there with her for as long as she’s with us.
Jim Downey
Filed under: Alzheimer's, Health, Hospice, Predictions, Preparedness, Sleep
. . . on my MIL’s condition.
She made it through the night, though has been in a light coma for the last several hours at least (that’s not a medical diagnosis, but seems to fit). My wife and are are still able to stay on top of her needs, and she seems to be in no pain, though her breathing is distressed and indicative of the nearness of death.
My wife and I are doing well through this, and have taken turns resting. My wife’s brother was able to come and spend a good long time with his mother this morning, and we’re getting plenty of support from friends and family. It’s about the best one could hope for, and I will have a lot to say about the whole experience once we have a chance to rest and recover a bit.
Best,
Jim Downey
Another brief update about my MIL . . .
Lisa, the hospice nurse was here a little while ago. Based on what she sees, she said that we should expect my MIL to pass on sometime tonight, and made arrangements to inform the people who are on call for the hospice organization. Based on her other recommendations we are also switching my MIL’s meds over to those which can be administered in liquid form, to minimize difficulty in getting them down.
It’s likely that my next update will be news of her death. May it come gently.
Jim Downey
Filed under: Alzheimer's, Health, Hospice, Predictions, Preparedness, Sleep
For all who are following things here with my MIL . . .
She has largely been sleeping/dozing comfortably, and we’re doing all we can to make sure that she stays out of pain, unworried. Either my wife or I are now with her all the time. She didn’t eat any supper last night, had a bit of yogurt this morning. Things seem to be winding down as well as they can be. Lisa, our hospice nurse, should be by later this afternoon to check and see if there is anything else we can do to help matters.
I will post updates as appropriate. Otherwise, do not expect to hear from me very much.
Best,
Jim Downey
Filed under: Alzheimer's, Daily Kos, Failure, Health, Hospice, Predictions, Sleep
“What’s wrong, MIL?”
She’d been restless most of the afternoon, but each time she called or squirmed enough to prompt me to investigate, the most she had been able to tell me was that she was “uncomfortable.” I tried to tweak her meds a bit, but I suspected that the duragesic patches which are supposed to be good for 72 hours were running dry half a day early.
She took a sip of water from the straw I held to her lips. She swallowed, then said: “I was just worried.”
“Worried? What are you worried about – maybe I can help?”
“Well, I think I need to go shopping.”
“Shopping?”
“For clothes. For when I take the train back to college this fall. I won’t have time to shop once I am there.”
* * * * * * * * * * * * *
My wife had been napping. These days, each of us does what we can to get enough sleep, whenever we can. Because while I write these entries about what I have been doing in caring for my mother-in-law, be assured that my wife does even more in caring for her mom. So we watch out for each other, try and leave time for napping.
When she came down, asked how her mom had been doing, I told her my suspicions about the patches. We’d seen evidence previously that they ran out a bit early for my MIL – everyone has a different speed at which they metabolize medicine, even something as supposedly stable as a transdermal patch. She agreed with my assessment, and we changed the patches 12 hours early. At worst, the hospice might complain that we had made a mistake, and not to do it again.
I didn’t care about that, and I wasn’t sure that it would matter – that the end would probably come before we had to worry about a new Rx for the patches.
* * * * * * * * * * * * *
It takes a while for the painkillers from the patches to saturate the system – there’s a ‘ramp up’ period, once they have gone dry. This is well understood, and we have additional painkillers on hand to help get past the initial stages – what are called “breakthrough” medicines. We’d given her what we hoped was enough of this when we got her to bed, along with something to help relieve her breathing difficulties. For a while, she slept fitfully.
Then at midnight she woke, tried to get out of bed. I heard her (I was on-call), got dressed and went down to see what she needed. As I got her disentangled from the bed rails and onto the commode, I asked her if she was OK.
She looked at me, her eyes watery and unfocused. I never did get much of an answer out of her, but it was clear from how much difficulty she was having breathing that I needed to do something. I did – increasing the dosage of the med she takes to control this kind of spasming. This is what we’ve been instructed to do by the hospice nurses.
It worked. After I got her back into bed and settled, her breathing relaxed, and she started snoring loudly. She snored like that for two and a half hours, during which time I actually got some sleep. You learn what sounds are good sounds when listening to a monitor at night.
And you learn what sounds are not. I woke about 3:00 to the sound of silence. Not even a hint of breathing from my MIL.
I went to check, found her still breathing, but so lightly and shallowly that you could barely tell it, even when standing right over her.
Two more times before I got up at 6:00 I went to check, see if she was still with us. She was.
* * * * * * * * * * * * *
She wanted to get up for breakfast, so we did that. But she was breathing and coughing so hard that when she’d finished we didn’t even suggest that we go ahead with her normal Sunday morning bath. Getting her dressed, she was barely able to hold herself upright in the wheelchair. When we got her into bed her breathing was again stressed, and again we gave her something to help, half a dose.
And then we called hospice.
Lisa, our usual nurse, had told me on her last visit Thursday: “Call. Anytime. We don’t like surprises.”
So I called. The office put us through to the nurse on call this weekend. It was Lisa. I told her how things had gone in the previous 24 hours.
“I’ll be right over.”
* * * * * * * * * * * * *
“There’s significantly diminished lung capacity,” said Lisa, setting aside her stethoscope. Kneeling there next to the bed, her hand gently brushing my MIL’s hair away from her face, she looked up at us, then back at my MIL. “Can you say goodbye to me? I just stopped by for a moment, and have to leave now.”
It took my MIL a few moments to understand. Then she smiled slightly, and with a weak voice said “Goodbye.”
Lisa gave us another patch, this one to help control secretions into my MIL’s airway. Some swabs for her mouth, when it needs moistening but she is unable to drink. Told us how to arrange the pillows under my MIL to help control aspiration problems. And that we should freely use the meds which help control breathing spasms, keep her comfortable. “It’ll probably make her even sleepier. But at this point, that is not a bad thing.”
I nodded.
And now we wait.
* * * * * * * * * * * * *
Jim Downey
(Cross posted to Daily Kos.)
No, sadly, not the musical movement. Rather, the approach we now take to caring for my MIL. All our routines are slipping away, the carefully practiced choreography which has defined our lives for years no longer relevant.
I’ve been saying for a while that we were coming to a close of this chapter of my MIL’s life. I’ve been wrong before in my predictions that it would come on this day or that, before or after a particular holiday or birthday. And so I may well be wrong again when I say that we are now on the last few pages of the book.
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.
I’ll keep you posted.
Jim Downey
Communion Of Dreams 