Filed under: Alzheimer's, Government, Health, Hospice, movies, Sleep, Society
I sat, my back to the fireplace, feeling the heat from the fire, listening to the pop and crackle of the fresh log I had just placed there. Across the room, the hospice nurse and my wife were sitting at my MIL’s feet, the nurse doing her routine examination for the second time in a week.
This is new. Previously, we’d only been on weekly visits. But as it is clear that we’re in the final days of my MIL’s life, we decided to schedule an additional time. And, thanks to how hospice works, we’ve the option of calling for additional visits as needed, or adding in more regular scheduled visits each week. Just knowing this resource is available is comforting.
Lisa, our regular nurse, listens, touches, looks. I am struck by just how much good medicine is still based on these simple techniques, when it all comes down to it.
As it does when you are dying.
* * * * * * * * * * * * *
“What do you need, MIL?”
“I need to call my mother.”
I go get her cordless phone, dial the number and hand it to her while the phone is still ringing. Someone answers on the other end.
It is a brief conversation. She just wants to let her mom know that she is all right, not to worry. The voice on the other end reassures her, tells her to wait until she comes for her. She hands the phone back to me, and I disconnect. She is happy.
My wife and I had set this up weeks ago, in the event that the occasion would come that we needed it. Simple, really – an incoming call to my wife’s cell phone from my MIL’s number would be the cue that her mom needed this kind of reassurance. No need for me to say anything, contributing to the illusion.
* * * * * * * * * * * * *
We watched Waking Ned Devine the other night. A quirky, offbeat little movie that I love. The central theme is about love/friendship, played out in the story of a small village in Ireland where a local lottery winner has died before he can claim his winnings, leaving no heir. The villagers band together to claim and share the money, but as much out of memory and fondness for the departed Ned Devine as their own greed. It’s the sort of movie that always leaves me with bittersweet tears.
And after, surprisingly, my wife got to talking with her mom about MIL’s own situation. From an email my wife sent her sister following this:
When the movie was over Mom was obviously tired but also looked like she wanted to talk. I’m not sure what made me do it, but I started talking to her about her own death much more directly than I have before. I did so as carefully as I could, but I really felt like I needed to be very direct and clear (probably also influenced by the conversation with you). I told her that the nurse that comes every week does so because we think she may be dying, that we are caring for her the best we can and will continue to do so for as long as necessary. I mentioned that she often talks about people who have passed on, and told her that it would be OK for her to do so as well. That we love her very much but we want her to be happy, and if her parents come for her it is OK for her to go with them. She actually seemed to understand what I was talking about, though now and then, she seemed a little unsure, so hopefully the permission part (at least) will sink in.
Permission? To go. That it is OK to die. Often people who are in hospice need to hear this, one way or the other.
* * * * * * * * * * * * *
Lisa is surprised at just how cold my MIL’s legs are. “They’re like ice!”
You don’t usually get that kind of reaction from a seasoned hospice nurse. And, perhaps a bit out of embarrassment, she shifted over into more clinical terminology. Blood pressure. Indications of reduced lung capacity, congestion, observation of ancillary breathing mechanisms. Compromised circulation. She asks about appetite, kidney and bowel function, signs of pain or distress, coughing. Clinical terminology or not, her voice is always concerned, compassionate. “I detect a number of changes.”
We nod. My MIL is worried with whether her lap shawl is straight.
“When she is showing signs of breathing difficulty, or coughing, use X or Y medicine as necessary.”
She looks at my MIL for a long moment. “We want to make sure she is comfortable.”
Indeed we do.
* * * * * * * * * * * * *
They usually won’t tell you this beforehand, but there comes a point in hospice care where the usual restrictions about medicine dosage and usage becomes, let us say, somewhat more casual. The rules are in place to control the abuse of very dangerous and addicting drugs, after all. But when the end comes, no one in their right mind is going to be worrying about addiction, when there is comfort to be given.
We’ve reached this point. My wife and I had realized it last week, but were reluctant to act too much on this knowledge without confirmation from our nurse. No, she didn’t tell us to exceed any prescriptions, but was willing to answer our questions about what medicines were suitable for what problems. So, in response to anxiety, or breathing difficulty, or coughing spasms, we add in a few drops of this solution, another one of those pills, maybe a small shot of whiskey.
* * * * * * * * * * * * *
My wife smiles slightly, amused, as I add another log to the fire. I know what she is thinking – she is remembering my protestations earlier in the season that we didn’t want to be too profligate with the wood I had stockpiled.
Yet it is very cold out, and my MIL does so love a fire.
* * * * * * * * * * * * *
Jim Downey
(Cross posted to Daily Kos.)
With all the dignity and presence of a southern lady, my MIL held her self erect, looked at me and said “I’ve had a very nice time this evening. And dinner was lovely. And your performance, though I’m a little ashamed to admit that I can’t remember exactly what you did.”
“Well, thank you!” I answered. Then I helped her finish up on the commode next to her bed, and carefully laid her down for a nap.
It was 12:45 in the afternoon. She had just finished lunch consisting of a peanut butter & jelly sandwich, Pringles, and some chopped pears. Needless to say, there had been no ‘performance’ by me or anyone else.
* * * * * * * * * * * * * *
“I don’t know how you guys manage it,” said Lisa, the hospice nurse. She had just finished her examination of my MIL, and had been going over what she saw as we talked after. She’d mentioned the option to have an aide come over to sit with my MIL while we got out for a bit.
After my wife and I exchanged glances, I (or maybe it was my wife – these details start to slip away) said that we preferred to not both be gone at the same time at this point. Why? Well, because it feels like the end. We want to make sure one of us at least is here with her.
And it’s not just us. Lisa commented that my MIL had never before looked so ashen, so grey. We agreed that she would come again on Monday, unless we called her sooner.
* * * * * * * * * * * * * *
Her fever spiked about 4 degrees higher than normal last night, just as my wife and the overnight aide we have in three nights a week were getting her to bed. I was washing the dishes when my wife came into the kitchen and told me, on her way to getting a Tylenol tablet for my MIL. I dried my hands and followed her back to the bedroom. We got the extra pill into her, I checked her pulse and the color of her fingernails, had her look at me to see whether she could focus or not.
She couldn’t.
I wondered whether she’d make it through the night.
She could.
* * * * * * * * * * * * * *
“My mother has passed on, but Auntie has taken over for her.”
“Auntie?” asked my wife.
“Yes, Auntie. She has taken over for my mom. I was waiting for my mom to come for me, but she’s passed on, so Auntie has taken over . . .” a pause, uncertain look around the room. “. . . everything.”
“Well, OK.” My wife looked at me. We’d been waiting for this. Together, almost simultaneously we said, “MIL, if she comes for you, you can go with her. It’s OK.”
“It’s OK?”
“Yes, when Auntie, or your mom, or your dad – when they come for you, you can leave with them.”
“I can?”
“You can indeed. Until then, we’re taking care of you here.”
“But if they come, I can go?”
“Yes, you can.”
* * * * * * * * * * * * * *
We met with the social worker for an hour or so yesterday afternoon. She is kind, intelligent, insightful. She offered a lot of suggestions for us to consider, from a respite break (which would take my MIL to a skilled nursing floor at the local hospital for five days), to advice on how to better manage the stresses we’re under.
None of it was useful.
Oh, it was, in the sense that had we not considered those things, it would have been very beneficial to bring it up. And neither my wife nor I were aware of the option for the five-day respite break.
But we’ve managed through these things long enough that I think, honestly, we’re doing about all that can reasonably be done to handle the stresses, to give ourselves (and one another) what breaks we can.
And right now we’re not willing to see my MIL off to the five-day break. Not right now. If she rallies again, and seems stable, then we’ll consider it. But not when things are so shaky with her health. After all we have been through, after all we have done, to let her slip away now in the care of someone else in a strange environment would be just too painful, would feel very much like we had failed to see the thing through to the end.
Neither of us wants that.
* * * * * * * * * * * * * *
As I got the safety rails and straps on the bed in place, my MIL looked up at me, concerned.
“Something wrong? Something bothering you?”
“Well, like I said, I have had a very nice time tonight.”
“Yes, thank you. It is kind of you to say so.”
“But I think I should be going soon. My mother and father have been on a trip, and they are looking for me.”
“And when they come, you can go with them.”
“But if I am sleeping,” she said, that worried look on her face again, “how will I know?”
“If they come looking for you, I will be sure to tell them where you are. I promise.”
And I keep my promises.
* * * * * * * * * * * * * *
Jim Downey
(Cross posted to dKos.)
Filed under: Alzheimer's, Book Conservation, Health, Hospice, Predictions, Preparedness, Sleep
(This is something of a follow-up to yesterday’s post.)
My MIL made it through the night. And seems to be holding her own today. But her fingernails are still blue, breathing noticeably labored. To be perfectly honest, I hope the end comes quickly and with ease for her. If that sounds horrid, or cold, or heartless – well, I’d say you haven’t been paying attention. I am none of those things.
We’re trying to keep things as ‘normal’ as we can, to maintain our usual schedule, get my MIL up at her usual time, have meals as planned, all the normal routines. This might be a bit absurd – it feels like it to me – but consistency really does give comfort to someone with Alzheimer’s. And while other health factors are now in action which will likely end her life soon, she is still very much an Alzheimer’s patient.
But I am changing my schedule a bit, canceling meetings with clients, postponing this or that activity to make sure either my wife or myself are always here. We had our usual ‘respite’ break scheduled for this Thursday afternoon, but I worry about leaving the respite sitter here alone with my MIL. My clients have all been understanding about this, which is good. As I told a friend this morning, there are advantages to being a skilled craftsman in an unusual profession.
So, we wait, pretending that things are normal. Until they’re not.
Jim Downey
It’s hard to say when the end will come. But we must be getting close.
How close? Days. Perhaps just hours.
Why do I say this?
Instinct. Well, that and lots and lots of small clues, details that add up to one probability, details that probably most wouldn’t notice.
But among the little things are some big mile-markers. The last few days, my MIL has slept between 18 and 20 hours per day. When awake, she breathes with some labor, and she regularly shows signs of cyanosis. Her confusion is noticeably worse.
Couple that with what Lisa, the Hospice nurse, noted on her last visit, and I’ve been mentally reviewing what we need to do, what we need to look out for, what I will need to tell the family. I worry that I have cried “wolf” too many times, in my effort to keep everyone informed. Well, better that than a misguided attempt at secrecy, I suppose.
So, I re-read all my posts on this subject. And went through, once again, Dying at Home.
I’m about as ready as I can be.
I hope.
Jim Downey
Filed under: Health, NPR, Predictions, Science, Science Fiction, Writing stuff
Organ transplantation used to be purely the stuff of Science Fiction. Now it is fairly routine, though still problematic due to the need for powerful immunosuppressants in most cases in order to avoid rejection. And there is a constant need for donor organs, which has also led to a couple of other staples of Science Fiction: cloning and organ farms.
[Mild Spoiler in next paragraph.]
I use both cloning and organ farming as a plot element in Communion of Dreams, which is revealed with the discovery of Chu Ling’s real history. Scientists have been working on cloning replacement organs, and there have been fairly solid reports of real organ farming (harvested from executed prisoners) to come out of China (one of the reasons that I used China as Chu Ling’s home). But cloning organs hasn’t been solved yet, and even if you have vast sources of donor organs, transplantation is still problematic due to tissue rejection.
Thankfully, scientists tend to be more innovative than writers, and have sought other solutions to the problem of replacement organs. One case I heard about last night on NPR’s All Things Considered uses an actual solution containing an active ingredient in shampoo:
Researchers Grow a Beating Heart
A custom-built replacement organ sounds like science fiction, but researchers working in Minnesota have figured out a way to construct a beating rat heart in the lab.
***
Taylor and her colleagues knew that when nature builds a heart, the cells attach to a kind of scaffold, or frame, made of things like proteins. “It’s basically what’s underneath all of the cells, the tough part that the cells make to hold each other together,” she says.
The researchers decided to see if they could take a dead heart and remove all of its cells, leaving this scaffold behind. The scientists thought they could then use the scaffold to construct a new heart out of healthy cells.
How did they remove all the original cells? With soap:
He tried enzymes, but they dissolved the heart. Other chemicals made the heart swell and change shape. Then one day, Ott grabbed a chemical known as SDS. “It’s a regular component of shampoo,” he says. “It’s a soap.”
At first nothing seemed to happen. Then, patches on the heart began to turn white. The red part, the meaty part, was disappearing.
“You can see the detergent working and making the heart literally translucent so it turns into a jellyfish sort of appearance,” says Ott, who explains that it looks just like a jellyfish shaped like a heart, with all the organ’s intricate 3-D structures.
Read the whole thing, and there is video there as well showing the process. Simply fascinating.
This is the thing that I love about science – a willingness to try crazy ideas, to experiment, to learn and then apply that learning to new problems in ways which could not have been foreseen at the start. And it is the thing I envy about science, because had I proposed such a procedure/technique in my book, it would have been considered absurd and dismissed by most readers.
Bravo to the scientists and researchers.
Jim Downey
Filed under: Alzheimer's, Astronomy, Bad Astronomy, Carl Sagan, Health, Hospice, NASA, Phil Plait, Science, Space, Titan
Phil Plait, the Bad Astronomer, has been at the American Astronomical Society meeting in Austen most of this week, and has had a wonderful series of posts about the meeting. He just posted the final one this morning (though there will undoubtedly be follow-up posts once he is home as sorted things out). You can find the whole series on his blog.
* * * * * * *
Jacob sent me this note:
http://www.itwire.com/content/view/16012/1066/
Not exactly related to Communion aside from “tholins”, but I thought you’d be interested.
It is interesting to see that these complex organic molecules have been found in such abundance. The term tholin was coined by Carl Sagan in his early writings about Titan, and I discuss the material extensively in Communion of Dreams (if you haven’t read it -and if not, why not?).
~~~ Thanks, Jacob!
* * * * * * *
Speaking of notes, I got this nice one from Carl:
I just wanted to say that I’ve truly enjoyed your posts since you’ve joined UTI and your novel is top-notch. I’m not a big sci-fi fan, but your characters and description held me all the way through.
* * * * * * *
A brief update on my MIL’s condition: the visit from the hospice nurse on Thursday confirmed what we’d seen this week – continued deterioration. Her BP is very low, pulse weak, and heart rate very high (all worse than they were the previous week), and her lungs have diminished capacity and evidence of fluid. Once again we have tweaked her meds and treatment procedures, but this is mostly just an effort to keep her as comfortable as possible. I think part of the exhaustion my wife and I feel is just ongoing anticipation.
I’ll keep you posted.
* * * * * * *
Jim Downey
“She’s a strong woman,” said Lisa, our regular hospice nurse. We were standing out in front of the house, talking the way people do at such times, in spite of the 11 degree temperature and bit of cold wind. Neither my wife nor I had coats on. But it didn’t matter at that moment.
* * * * * * * * * * * * *
I came downstairs this morning, noted that there wasn’t a time marked on the blackboard in the kitchen. I went into the front room, where the health aide who stays here overnight three nights a week was waiting. I glanced at the monitor, heard my MIL snoring lightly.
The aide, Ruth, glanced at it as well, and then back at me. “She never called to get up to use the toilet.”
“Not at all?”
“Nope. She’s turned over or shifted around a couple of times, but never seemed to wake up at all.”
“Huh.”
“She done that before?”
“Not in recent history.”
* * * * * * * * * * * * *
We made it through the holidays. I kept thinking that I would write about how my MIL was doing, but everything seemed so unsettled, I wasn’t quite sure what to say. First Christmas, with my wife’s brother and his family over for a big meal and to exchange presents. That went fine, and my MIL seemed to enjoy herself, enjoy the company. But after her nap she had forgotten entirely that anyone had been to visit.
Then she had good days and bad days. Days when she mostly slept, days when she seemed to be tracking things around her pretty well, days when even simple words escaped her understanding. Fever would spike for a day, then back to normal for two. There were no trends that were easily identifiable.
New Years eve we mostly ignored. My MIL wasn’t aware of the date, and my wife and I weren’t up for doing anything. With the home health aide coming to stay overnight that night, we just did the usual routine, went to bed as normal – and I was asleep by 10:30. A friend teased me about it by email the next day, said I was getting old. I was grumpy, somewhat resentful in my reply. I’m often grumpy these days, due to the stress. I’m glad most of my friends understand.
* * * * * * * * * * * * *
Lisa came into the bedroom, set down her things, handed over the package of Depends for my MIL. Hospice covers everything, even that. My wife helped her mom sit up on the edge of the bed as I opened the drapes for the large double window.
Lisa pulled the wheelchair over to the side of the bed, settled herself, and began going through her usual exam, chatting pleasantly with my MIL all the while assessing her condition, asking us questions about how she had been doing the past week. As usual, she found it difficult to get a solid pulse when taking my MIL’s blood pressure, then her brows knit together for a brief moment. “78. Only number I can get.”
She looked from MIL to me and my wife. “Has she been sleeping long?”
“No, she just laid down after breakfast and getting dressed about five minutes before you got here.
Lisa nodded, continued the exam. But she was being a little more thorough than usual, checked my MIL’s fingernails closely, then her toenails. Listened carefully to her lungs, timed her heartbeat for a long time, tested the elasticity of the skin on the back of her hand. Asked about how much my MIL was drinking, kidney and bowel function. All the while smiling and interacting with my MIL, keeping her happy and engaged.
“How much is she sleeping each day now?”
My wife and I looked at each other, calculated a moment. “About 16 hours a day, give or take an hour or so.”
Lisa nodded. She looked at my MIL, asked “Are you feeling OK?”
My MIL continued her smile. “Well, I think so.”
“Any questions?”
She looked to me and my wife for some assurance. “No, no, I don’t think so.”
“Good, good,” said Lisa, packing her things.
“MIL, do you want to lie down again for a while?” I asked.
“Yes, I think that would be nice.”
My wife got her tucked back in bed safely as I escorted Lisa out.
* * * * * * * * * * * * *
Part of my difficulty in writing about my MIL these past days has been confusion about not just what to say, but about how I felt about it.
I’m tired. So very, very tired. As I’ve mentioned, this time of year usually carries something of a depressive element for me anyway. With the lingering uncertainty about where we were at with my MIL’s condition, I’ve felt a certain confusion about what I want, what to do. It is easy to understand how a care-provider will become exhausted by the process of doing what we’ve done for the past four or five years. It is even easy to understand how they might look to the end with a certain anticipation – not wishing for their loved one to be gone, but knowing that with the end will come release from the burdens of care giving.
What may not be easy to understand is how the prospect of that is a little frightening. No, I’m not talking about the mechanics of death – that is fairly easy to understand when you are a mature adult with the experience of losing friends and family. Rather, it is fear which comes from a change of definition of who and what you are.
And it is fear of guilt, at least in my case. Guilt over whether I could have done more, guilt over wanting to be free of the burden of care-giving.
* * * * * * * * * * * * *
“Are you finished with lunch?” I asked my MIL, as I came into the kitchen. I had been in my office, writing this entry.
“Yes. But I need someone to unblock the wheels.”
We have to keep her chair secured with a 2×2, otherwise she’ll try and leave the table. I set down her after-lunch meds on the table after I removed the plate for her lunch. “Oh, I can take care of that. Here, you need to take your pills.”
“Oh, OK.” She took her pills.
“Ready for a lie-down?”
“Yes, I am.”
I got her away from the table, removed her bib, and wheeled her into her bedroom. She used the toilet in there, then I helped her into bed. As I was tucking her in, she looked up me and said, “thank you for that delicious lunch!”
“You’re welcome. Have a good nap and call when you are ready to get up.”
And as I walked out, closing the door softly behind me, my eyes filled with tears.
* * * * * * * * * * * * *
I escorted Lisa out, after the examination. “I take it you see something?”
We walked down the front steps. “She’s declined. There’s congestion in the lower lobes of her lungs, and they sound rough all throughout. The low blood pressure and high pulse rate – it was over 110 – is not a good sign.”
“How was her heartbeat? Same irregularities as before?” I asked, as my wife came out to join us.
Lisa looked at my wife. “Yes, but hard to tell, her heart is beating so fast it kind of covers it up.”
“What do you think?”
“She’s close. The end could come at any time. Hopefully in her sleep.” Lisa said it in a way that was plain, honest, but sympathetic.
I nodded, looked back up at the house, the flags waving on either side of the front porch. “We were surprised she made it to new year, frankly.”
“She’s a strong woman.”
I nodded, looked at my wife. “She is, indeed.”
* * * * * * * * * * * * *
Jim Downey
(Cross posted to Daily Kos.)
Filed under: Emergency, Flu, Flu Wiki, Guns, Health, Preparedness, Science, Science Fiction, Society, Survival, tech, Violence, Writing stuff
As I have mentioned previously, I enjoy shooting. And I carry a concealed weapon (legally – by permit and where allowed by law) pretty much all the time. This isn’t paranoia, just a simple recognition that we live in an unpredictable and sometimes dangerous world. That same mindset applies to preparations for any kind of small-scale disaster, whether natural or man-made. If you live in the Midwest, you understand that power outages occur due to weather (tornadoes in Spring, Summer, and Fall, ice-storms in Winter), and that you may need to be self-reliant for days or even a couple of weeks. I’ve long abided by the Scout motto of “Be Prepared”, and while you wouldn’t find a years worth of supplies and a generator cached here, we could manage pretty easily for a period of a couple of months. That’s not too far off what is recommended by both the government and independent health agencies. As I’ve discussed, the onset of a pandemic flu may well cause a disruption of normal economic activity for a prolonged period, and I cite such a disaster as the background for Communion of Dreams.
Anyway, in an accident during one shooting trip this fall I managed to slice open my right thumb pretty well. I had ridden out to the family farm where I usually shoot with one of my buddies, so didn’t have my car, which contains a fairly complete first-aid kit. And, as it turned out, my buddy didn’t have any kind of first aid supplies in his car. We improvised a bandage from stuff in my gun cleaning kit, and things were OK. When I got home, I added a real first aid kit to my ‘range bag’, and didn’t think much more about it.
Then, a couple of weeks later I was back out at the farm with my BIL. We were walking the border of the property adjacent to a state park and marking it as private, since a lot of people don’t bother to keep track of where they are and we’ve had a lot of tresspassing. At one point down in a secluded valley my BIL and I paused for a breather, and just out of curiosity I checked to see if I had a signal for my cell phone. Nope. Hmm.
Now, it was nice weather, just a tad cool and damp when we set out. But it was November, and the leaves were slick in places where a fall could easily result in a twisted knee or a broken bone. I got to thinking – if I were on my own, what did I have with me that I could use in the event of an emergency? Oh, I had plenty of stuff in my car – but that was the better part of a mile away. What did I have on my person?
In truth, I was in better shape than most people would likely be in such a situation. I always have a Leatherman multi-tool on my belt, a small LED flashlight on my keychain, and a pistol and ammo. But still, since I don’t smoke I’m not in the habit of carrying matches or a lighter, I once again didn’t have any first-aid items, et cetera. I had stuck a small bottle of water in my jacket pocket, but that would hardly last long. I could probably cobble together some kind of splint or impromptu crutch, but it would be a challenge to get out of such a situation on my own.
When I got home I got to doing a bit of research about emergency survival kits. Google that, and you’ll come up with about 30,000 hits to sites offering everything from bomb shelters to equipment for first responders. Not particularly helpful. I decided to take a different tack, and started to think about what I wanted to have in a kit small enough that I would *always* have it with me. I set my goal for constructing a kit which would fit into an Altoids tin, since that is small enough to easily slip into any pocket.
This problem has been tackled by others, and there are actually some such small kits for sale that’ll run you upwards of $50. I looked over the commercially available kits, saw what others have done to solve the problems inherent in such a project, and came up with the following:
What you see there is:
- Surgical Mask (can also be used as a bandage)
- Fresnell lens for magnification or starting fires
- 20mm bubble compass
- Single-edged razor blade
- Suture pack (curved needle mounted with suture thread)
- Band-aids & steri-strips
- Antibiotic packet
- Emergency whistle
- Superglue (repairs, fabrication, wound sealant)
- Mini-lighter
- Cotton tinder tabs
- Water purification tablets (can also be used as antiseptic)
- 30′ of Spiderwire (15 lbs test)
- Safety pins
- Small ziplock bag for water
- Cash
- Painkillers
- Benadryl (anti-histamine, sedative)
- Anti-diarrheal tablets
Yes, it all fits in the Altoids tin. Just. It is not entirely satisfactory, as I would have liked to have a large piece (say 18″x24″) of heavy-duty aluminum foil, a couple of garbage bags, some lightweight steel wire, maybe some duct tape or heavier cord. But it is a pretty good start – any small kit like this is by necessity an exercise in trade-offs. (Edited to add 06/01/08: I wrapped about 15′ of 24ga steel wire around the mini-lighter in a single layer, tightly wrapped. Takes up almost no additional room, and will be easy to unwrap for use.)
In searching out the items I wanted (difficult to find items linked to my sources), it became clear that in some cases I would spend more on shipping for some of the components than I would for the actual items. So I made one such kit for myself, and another half dozen to give to friends. That got the cost down to under $10 each (not including the cash, obviously).
Your best survival tool in any situation is your brain. But it doesn’t hurt to have a few advantages in the form of useful items close at hand. With this small kit, and what I usually have with me anyway, I am reasonably well prepared to deal with most situations that I can envision. And I thought that since I went to the trouble to construct it, I would put the information about it here for anyone else who might have some use for it.
Jim Downey
Filed under: Alzheimer's, General Musings, Health, Hospice, Religion, Sleep, Society
I walked into the dark room, stepped up to the bed. My MIL looked up at me, and said “I don’t like these rails and straps.”
There are the standard ‘hospital rails’ on the side of her bed. And since she’s several times attempted to climb over them (and broken bones in the subsequent fall), we put some nylon straps across from one rail to the other in a sort-of cargo net arrangement. It allows her to move freely in bed, but stops her from trying to climb out on her own. “Well, I’m sorry, but they need to stay on.”
She smiled. “Doesn’t matter – I’ve decided that I’m going to leave today, go back home to Missouri.”
We live in Missouri. But I didn’t want to contradict her, not that early in the morning when there would be little point to it. If she went back to sleep, she’d likely forget the conversation completely, anyway. “That’s fine. But for now try and go back to sleep – you don’t get up until 8:00.”
“OK.”
* * * * * * * * * * * * *
While I am not religious (hardly), I nonetheless enjoy some aspects of the holiday season. Working in small-market radio for four years between college and grad school forever traumatized me in regards to Christmas songs of every stripe, but I enjoy gift-giving, feasting, some good Christmas cheer with family and friends. Yesterday afternoon during our ‘respite’ break, my wife and I went out and selected a tree from the family farm – cedar, the traditional family tree – and brought it home. Now that it is settling, we’ll get it decorated some time this weekend.
That’s late for us, and we got a smaller tree than usual. Simple reason for this: it’s less work. And right now, just about anything that’s less work is the default position.
* * * * * * * * * * * * *
Our regular hospice nurse was on vacation this week, so the agency made arrangements for another nurse to come by and check on my MIL. She arrived on time, bringing supplies and meds, and went in to chat with my MIL.
“I read that nice article about you!” she told my MIL.
“Article?” asked my MIL.
Out of sight of my MIL, I shook my head at the nurse, mouthed the words “She doesn’t remember it.”
She nodded.
I spoke to my MIL “She’s just talking about a nice article that was in the paper, about people who care for their loved ones at home when they get older.”
“Oh, did you write it?”
It surprises me sometimes the things that she remembers. I used to write a column for the paper. “No, I didn’t write it.”
“But you used to write such nice things.”
* * * * * * * * * * * * *
I’ve never obsessed about getting presents to people “on time” – most of my friends and family have busy lives themselves, and understand how things stand here with us. But this year we’ve really been caught short on planning, and our shopping has been sporadic, at best. I’ve been able to take care of a lot of routine things, and gotten a couple of special gifts. But for the most part I just haven’t had the energy and focus to try and find the right gifts for others. And the shopping we usually do for my MIL just hasn’t gotten done at all this year. That’ll be a disappointment to some.
* * * * * * * * * * * * *
I walked out with the hospice nurse when she was done checking over my MIL. Either my wife or I usually do this, so we can go over info we didn’t necessarily want to discuss in front of my MIL, the other staying and helping get my MIL dressed or back into bed.
“Anything to add?” she asked.
“No, not really. We’re just unsure of where we are. Not knowing is difficult.”
“Well, I can’t say for sure. But the end could come fairly quickly. You’ll just have to let us know if you see a sudden downturn, so we can be here every day rather than just weekly.”
I nodded.
“You know, you guys are doing just an incredible job in caring for her. I wish that half of our patients got even half as good care as your MIL is getting.”
“Thanks.”
And as I turned to go up the stairs, back into the house, eyes watering, she repeated: “You guys are doing an incredible job.”
Then why do I feel guilty? Like I should be doing more?
* * * * * * * * * * * * *
“I hope I’ve made the right decision.”
“What decision is that?” asked my wife, as she helped her mom sit up on the side of the bed.
“Well, I think it’s time I went home. I’ve enjoyed my stay, but I think that I should be getting back.”
“That’s fine,” said my wife, putting slippers on my MIL’s feet. “But how about some breakfast, first?”
“That sounds nice, dear.”
* * * * * * * * * * * * *
Jim Downey
(Cross-posted to dKos.)
Filed under: Alzheimer's, Art, Astronomy, Carl Sagan, Carl Zimmer, Cassini, Health, Hospice, Mark Twain, Predictions, PZ Myers, Saturn, Science, Science Fiction, SETI, Space, The Loom, Titan, Writing stuff
*This post previously ran at UTI last year. And while some of the personal details mentioned in it have changed – I did indeed keep that promise to tweak my manuscript, obviously, and things have continued to progress with my MIL – the sentiment is the same.
Jim D.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This has been a hell of a day. Not as bad as some, perhaps, but as far as routine days go, not the sort you want to pop up often in the queue. It started with my mother-in-law being ill. Now, most adults know how a young child (either their own or one they’ve babysat) can be when sick. Think intestinal bug. Think explosive diarrhea, of the toxic/caustic variety. Poor kid doesn’t understand what’s going on, or how to best cope with their misbehaving body (if they are capable of that on their own yet). Then picture that not in a toddler, but in a 95-pound woman well into dementia before the effects of dehydration and fever kick in. Took my wife and I two full hours to get her and the bedroom cleaned up.
And then I was on deadline to write my final column for my newspaper. Yeah, my *final* column. My decision, and if I want to go back the paper will be glad to have me. But because of the demands of care-giving, I could not adequately keep up with the art scene in my community (what I wrote about – weird to see that in the past tense). And I was feeling a little burned out with it as well. But still, closing off that particular chapter of my life was somewhat poignant.
So it’s been a day. Which is all just prelude to explaining that one of the refuges I seek after such a day is one of my “regulars”. Typically, it’s Twain, likely his Roughing It, which I have long considered some of his best and funniest work. But tonight, I turn to another old friend I never met: Carl Sagan, particularly his book Pale Blue Dot.
I’ve said before that I’m not a scientist. Which is perhaps why I don’t have some of the same quibbles that many scientists have with Sagan. But I really respect someone who can take scientific research and knowledge and present it in a form an intelligent layperson can understand. Stephen Jay Gould could do that for me. PZ Myers does it for me. So does Carl Zimmer. I could name others, but these are people I respect. In that same way, I really respected Carl Sagan, who I knew more as an author than as the host of of the PBS series, most of which I missed in its initial broadcast. Sagan helped introduce me to whole areas of science I had never considered before, and his considerable human decency in his atheism helped me understand that my own misgivings about religion were not an indication that I was lacking in morals or ethics.
So it was that when I started to write my first novel, Communion of Dreams (unpublished – yeah, yeah, I know I need to finish tweaking the mss and send it out again), I set most of the action on Saturn’s moon Titan, as a tribute to Sagan. Sagan had formulated a theory as to the nature of Titan’s atmosphere (that it contained a complex hydrocarbon he called “tholin”) which accounted for the rusty-orange coloration of the moon. His theories were pretty well borne out by the Huygens probe, by the way, though he didn’t live long enough to know this.
So tonight, on the tenth anniversary of his death, on a day when I’ve been through my own trials, I will nonetheless raise a glass, and drink a wee dram of good scotch to the memory of Carl Sagan. And I’ll promise myself, and his memory, that I’ll get that manuscript tweaked and published, if for no other reason than to honor him.
Here’s to Carl: Sorry you had to leave so soon.
Jim Downey
Communion Of Dreams 