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: 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
Filed under: A.P.O.D., Alzheimer's, Astronomy, Carl Sagan, Hospice, Science, Sir Arthur Eddington, Space
I commented via email to a close friend yesterday about the persistent fever my MIL has been running, 2 to 2.5 degrees above her normal. We’d seen fevers come and go for the last several months, but this one seems to have settled in for a while. I got back this:
Any particular reason for it, or is she just being like a star that’s going into its final flameout?
* * * * * * * * * * * * *
Like my friend, I grew up after the basic mechanisms of stellar evolution were pretty well understood. What I learned long ago, and seems to still hold basically true is this: stars in the main sequence will develop, go through an initial process of fusion converting hydrogen into helium, and then will evolve one of several ways depending upon initial mass. Small to medium-sized stars will make it into the helium fusion phase (primarily producing oxygen, nitrogen and carbon), before burning out and eventually becoming a white dwarf. Larger stars can go on to greatness, however, and in the sequence of their lives (including supernova) produce all the natural elements we know in a process known as nucleosynthesis. Either way, massive amounts of material are stripped away from the star and disseminated out into the universe through explosion, solar wind, and other similar mechanisms.
* * * * * * * * * * * * *
What is oldest, lasts longest. That is the basic equation to understanding Alzheimer’s.
Generalizing: First, the person with Alzheimer’s will lose the ability to learn new skills. Then the most recent memories will slip, and each succeeding layer of memory acquired in their life will melt away. Metaphorically, they are being deconstructed – like some great skyscraper which is slowly dismantled from the top down, floor by floor. Compare this to other diseases and injuries, which are more like an implosion of consciousness, collapsing in on itself all at once.
Because of the way the disease progresses, layer after layer of experience and memory being peeled away, the patient regresses through life, becoming once again a child in many ways. This is likely the origin of the notion that the elderly experience a “second childhood” with dementia.
* * * * * * * * * * * * *
Looking back over the last three or four months, it has been a difficult time. I read the posts I’ve made here on the topic, and am frankly surprised that things have been as bad as they have been for as long as they have been. No wonder I am exhausted, even with the extra help we’re getting thanks to Hospice.
Yesterday was a bad day. Whether because of the fever, or just her deteriorating condition, my MIL was really in a state of constant confusion about everything starting first thing in the morning. Nothing was easy, and she needed near-constant reassurance and supervision. Then, shortly after I had gotten her up from her afternoon nap, she evidently had another TIA, and for a while only spoke gibberish – complete word salad. Needless to say, this was frightening for her, and she was almost combative in response. After an hour or so she rallied, but it was still a difficult evening until we got her to bed.
* * * * * * * * * * * * *
We are made of star stuff.
– Carl Sagan, Cosmos.
Ever since Sir Arthur Eddington sorted out the hydrogen fusion theory of star fuel, which led to the understanding of how the elements are created, there has been a growing awareness that we are, quite literally, the stuff of stars. All of the atoms in our bodies were likely forged in the fusion furnaces of stars now long gone.
And those atoms are shared around. Recycled. I remember seeing somewhere a fun calculation that all of us – each and every person alive – carries with them something like 200 atoms which were in the body of Jesus (or, say Nero, Hitler, et cetera…). Whether a person is eaten by a predator, or their body allowed to decompose in the ground, or burned on a pyre, their atoms just go back into circulation and eventually make their way into all of us.
And one day our own sun will change from a hydrogen-fusing star to a helium-fusing star, if only for a little while. It will likely swell up into being a red giant, and when it does it will consume Earth, or atomize it and blast it into space.
So yes, my friend, in a very literal way, my MIL is exactly like a star that’s going into its final flameout. And I find that oddly comforting. And beautiful.
Jim Downey
(Cross posted to UTI.)
Filed under: 2nd Amendment, Alzheimer's, Ballistics, Failure, Feedback, General Musings, Guns, Promotion, Publishing, RKBA, SCA, Science Fiction, Society, Writing stuff
My shooting buddy S called me up yesterday morning, wanted to know if I felt like getting out to do a little plinking. Since we had a warm front move through the night before, it was forecast to be in the upper 50s – not your typical January weather for Missouri. A chance to get out and do some shooting was most welcome.
He said that his Brother-In-Law was in town. I knew that S and T (the BIL) had hunted together for years, and that S trusted T not to be an idiot with a weapon, but I didn’t know much about him beyond that. S wanted to know whether it was OK for T to come along, try out some of our pistols. “Sure!”
So we set it up and went out to the range. As is my preference, informal shooting on private land – just tin cans at about a dozen yards for pistols, somewhat further for a little 9mm carbine of mine. Relaxed, laid-back, but still sufficient to keep my skills sharp and my mind off of being a full-time care provider for a few precious hours.
Since I didn’t know T, I wasn’t sure of his proficiency with handguns. And as we were talking about the guns we brought, getting them out and getting them ready, it was clear that he hadn’t ever shot a number of them. This isn’t too surprising, since several of them are somewhat uncommon.
My buddy S and I went first – our guns, make sure everything is working OK. When it was T’s turn, with a casual concentration he outshot us both, with our own guns. Turns out he has a law enforcement background, and still is involved in firearms training. As I noted to a friend in an email last night:
Nice to be shooting with someone that good, who wasn’t trying to be a dick about it. I’m a pretty decent shot, and can be quite good if I push myself into a ‘competition’ mindset. But I would really rather just relax and shoot without having something to prove. S is the same way. But trust me when I say that is somewhat rare – too often the competition bug gets in the way.
T was a state level competitor, but that was some years back. So now he’s relaxed – and good. Probably no where near where he was when he was competing, but that’s OK. Shooting cans at 15 yards was perfectly fine.
* * * * * * * * * * * * *
OK, I’m going to brag a bit. Though it is all true.
When I was heavily involved in the SCA I was *heavily* involved. For a period of maybe about ten years I was known throughout the world-wide organization, in no small amount because of my ability as a fighter in the SCA style of martial arts. I had achieved the highest awards and rankings, acted as the chief officer in charge of all the fighting rules and safety criteria, and had literally written the definitive instruction manual for one particular sub-set of the martial art (greatsword use, if you want to know). I was, simply, one of the best there was. Given that there were tens of thousands of people engaged in this martial art around the world at the time, this was no small accomplishment, though of course in the ‘real’ world it doesn’t amount to anything of note.
But one thing which you might find a bit curious: in an organization where the basic measurement of skill is winning within the context of a tournament (patterned somewhat loosely on chivalric tourneys of the Middle Ages), I only won exactly four tournaments in my entire SCA career. Two of those were ‘Crown Tourney’, in which the ‘ruler’ for a six month period is chosen, and two others were other somewhat prestigious tournaments. But that’s it.
* * * * * * * * * * * * *
Eric Zorn of the Chicago Tribune posted a piece last week titled “50 things I’ve learned in 50 years, a partial list in no particular order.” It’s kind of fun, and while I disagree on a few points, as I approach my own 50th birthday later this year I find it’s a list I pretty much could have come up with myself. In particular, he notes this:
38. In crisis or conflict, always think and act strategically. Take time to figure out what the “winning” outcome is for you, then work toward it.
I learned this long ago as applied to all of life, phrased simply as “define your victory conditions”. It has meant a somewhat less conventional life for me, mostly free of the trappings of “success.” And I’m OK with that.
* * * * * * * * * * * * *
My friend responded to my email about shooting yesterday with this:
Nice to be shooting with someone that good, who wasn’t trying to be a dick about it. I’m a pretty decent shot, and can be quite good if I push myself into a ‘competition’ mindset. But I would really rather just relax and shoot without having something to prove. S is the same way. But trust me when I say that is somewhat rare – too often the competition bug gets in the way.
You are men.
Men have testosterone.
It’s very simple math.
My reply:
Over-simplified, actually. It’s more of a mindset.
***
I won four tournaments in my entire SCA career. Crown twice, Valour, and a memorial tourney in Des Moines. That’s it. Yet I had a world-wide reputation, and it was justified. By almost any measure you could devise, I would have been considered an ‘alpha male’ in terms of the prevailing testosterone pop-psych.
Why? For the same reason that I didn’t want to get all competitive with T and S when shooting yesterday: winning things like that just isn’t that important to me. Some guys with *plenty* of testosterone are perfectly happy to define their lives in ways different from the prevailing pop-psych.
My friend’s insightful response:
Although I have noticed that at some level of competence, whatever the subject, people don’t seem to have quite the need to compete that they would otherwise. I’ve run into it myself in some areas. I think that with T and S and you, all of you knew that you’re competent shots and the idea was not to plink off the most cans, but to have fun trying weapons. And that’s what you did. I guess a better way to say it is that when people are comfortable enough in their own skin, their own level of ability in whatever they are doing, they don’t need to compete and can just enjoy participating in the activity.
Is that what you mean?
Exactly.
* * * * * * * * * * * * *
After shooting, we got back to my place, and hung out a while back in my bindery (where I have a large working table where we could set out some guns and whatnot to look at and talk about.) In the course of the conversation, S mentioned to T that I had written Communion of Dreams, and that it was up on the web for anyone to download.
“Doesn’t that make it kinda tough to make any money off of it?” asked T.
“That’s not the point,” I answered.
Because, while I wouldn’t mind selling the book to a publisher, and think that eventually having the book online will help in doing so, that’s not what my ‘victory condition’ is. My victory condition is to have people read the book, find it an engaging and thought-provoking story. Sure, lots of money from having a best-seller would be nice, but in all honesty I can earn a decent income from my book conservation work. My real goal is to be respected as a writer. And if I have to do that in an unconventional way, well, that’s a path I’m used to walking.
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: 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 