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.)
“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
Yesterday was dreadful.
I don’t know what happened to trigger it, but it was one of the worst days that my MIL has had in a while. At least since this day. And this time it manifested itself as a constant need for reassurance. As I told a friend in an email:
Ugh. Not with the ongoing problems with MMIL. It can take me 20 minutes to get her to settle down, only to have her get wound back up about something ten minutes later. Needless to say, I’ve accomplished almost nothing today.
I literally spent at least half the day just sitting and talking with her, doing my best to help her remain calm and not obsess over contacting her parents or going “back to school”. Even with all my experience and what I’ve learned about distracting her and redirecting her attention, it was an almost constant battle.
And in the middle of it, I got an email from another friend with a link to this video:
That’s basically the last six years of my life compressed into six minutes. You want to have some idea what it is like to be a care-provider for someone with Alzheimer’s or other age-related dementia? Watch it.
Jim Downey
“Well, I’ve enjoyed my time here, but I really should go.”
I sat on the couch next to her chair. The slight hiss of the oxygen cannula under her nose could still be heard over the sound of the concentrator in the other room. Her hands picked absently at the shawl we had over her lap and legs. “Well, we’ll be having supper in about an hour.”
“We will?”
My wife entered the room, sat on the floor by her mother’s feet. “What’s up, Mom?”
“Well, I was just saying that I thought I should be getting home, but he tells me that we’re going to have dinner soon. I don’t have any money for dinner.”
“It’s OK, you don’t need any money,” said my wife.
“Oh.” Pause. Look at me. “But I should still tell my mother. She’s been on a long journey, and just got back. She’ll want to know where I am.”
This has become routine. I answer, “She knows. Everyone in the family knows where you are. They know that you live here and we take care of you.”
“Are you sure?”
“Yes, here,” my wife grabs a nearby phone book, turns to the page we’ve marked during this exact same conversation previously. “See, right here is your name, and the address, and the phone number. Anyone who wants to find you can, right here in the phone book.”
“Oh.” Still dubious. “But does my mother know?”
“MIL,” I say, “she asked us to look after you, until she comes for you.”
“Really?”
“Yup. And you can stay for as long as you want, until she comes. And then you can go with her.” I’m impressed by the certainty and reassurance in my wife’s voice.
“Oh, thank you dear, that would be lovely. This is a very nice place you have.”
Indeed it is. It’s been her home for 53 years, and is just the way she wanted it.
* * * * * * * * * * * * *
She seems to be stable again. Following the events mentioned in this post, we weren’t sure which way things were going to go. But after talking with the hospice people, tweaking her meds some, a few days of increased sleep, and with long talks with her to help settle things when she got anxious, she settled back more-or-less into the most recent patterns we’ve seen. There’s little doubt that she suffered one or more TIAs, or a small scale hemorrhagic stroke.
But she has once again proven to be surprisingly resilient. I’m fairly confident that she’ll make it at least to Christmas, probably to the new year. But as in all things, nothing is certain.
* * * * * * * * * * * * *
I wrote this a couple of years ago, as a submission to NPR’s This, I Believe series.
The Power to Forget
I believe in the power to forget. On December twelfth, 1969, my world changed forever. My father was murdered. I was eleven years old.
In the middle of the night I woke to flashing lights from a police car. A knock at the door, and I heard my mom answer it. Then I heard a man say: “Marlene, Wil’s been shot.”
See, my dad was a cop. And as happens all too often, he was killed during a routine procedure, in this case a burglary investigation. They caught the man who killed my father that same night. He was tried and convicted, sentenced to die. That sentence was commuted in 1973 by the Supreme Court, and to this day he is in prison.
I think he is, anyway. I don’t know for sure, because I have tried my very best to forget him. It was that, or succumb to the hatred that threatened to define my life.
For a while I tried forgiveness, since that is supposed to be liberating. When I say for a while, I mean for years. But I failed. There are some things that cannot be forgiven, at least for me.
Instead, I have slowly, and carefully, excised his name from my memory. Now and then something will happen; I’ll come across a story in the paper about him being up for parole, or a family friend will ask “whatever happened to so-and-so,” and I’ll have to start again to forget.
It’s not easy. Much of our culture, much of our popular literature, is based around the theme of a son avenging the death of his father. The whole “find the bastard who shot my pa…” thing. You may not notice it, but I do. And every time I hear about another officer down, every time Father’s Day rolls around on the calendar, I think about my dad. And I think about his death. And I deny the existence of the man who killed him.
Even now, as I write this, his name tries to emerge, tries to struggle free from where I have buried it. But forgetting means that I don’t have live with a constant, aching anger. It means that I don’t have to be trapped in that moment of history. It means that I can continue with my life, never forgetting the love I have for my father, or what it meant for him to die, but not being possessed by a need for vengeance.
I believe in the power to forget. How many old grudges still fuel the fires of revenge in this world? How often have more people had to die because of a fixation on a memory? How much better would things be if we could just clean the slate, forget the offenses we’ve suffered and the ones we’ve inflicted, and move on?
* * * * * * * * * * * * *
Now I am not so sure. Watching my MIL, caring for her as she slowly forgets even the names of her children, that she was ever married, I wonder whether the burden of forgetting is worth the peace. Certainly, she is at peace (most of the time), so long as we do not disrupt the carefully constructed cocoon around her.
I would not want that fate, even if I would be mercifully unaware of it, as she is.
Perhaps, as in most things, it is the matter of intent that makes the difference.
Jim Downey
(Cross posted to dKos.)
I wanted to follow-up to this post of yesterday, for anyone interested.
It seems likely that my MIL has had one or more T.I.A.s or possibly even a small full-blown stroke. This would explain her marked shift in sleep habits, increased confusion and much greater aphasia – and is really about the best explanation we can come up with, since there haven’t been any other changes in her diet or condition which would account for the rapid deterioration.
It is frightening, for both us and her. Clearly, she is confused and unable to explain herself and her worries to us, and frustrated by trying. She is completely lost in time and location, not aware of being at home, constantly fixated on “going home” and seeing her parents. But we know she still loves – every chance she gets when my wife is close to her, helping her stand or dress, she will kiss her, holding on tightly for a moment, letting that touch express her feelings.
I never did hear back from our hospice nurse, which is both disconcerting and disappointing, but since there didn’t seem to be a medical emergency to deal with, I didn’t want to keep calling her. This morning we will contact the hospice agency and see if they can help us out with some additional anti-anxiety meds for my MIL, since that seems to be the best thing for her at this time. Otherwise, we will do what we can to continue to make sure she feels comfortable, and safe.
Jim Downey
Those who dream by day are cognizant of many things which escape those who dream only by night.
— Edgar Allan Poe, “Eleonora”
A friend passed that along, from today’s Quote of the Day. It is very appropriate. Howso? Well, because for the last 24 hours or so we’ve seen a rapid deterioration of my MIL’s mental condition, including a lot of seeing people and things which are not there (at least in my perception). Further, she’s been holding conversations with these people and things, as though they are responding to her. And when you come into the room, genteel and considerate woman that she is/was, she wants to include you in the conversation, or explains what has been going on so that you don’t feel left out, and expects you to understand and participate. It is very disorienting, because there really is no logic or coherence to these visions, and the conversations are little more than word salad.
Further, her sleep habits have changed as well. She had been sleeping more and more, but all of a sudden yesterday afternoon she didn’t really nap, and last night she was awake more than she was asleep. My poor lady wife, who was on-call, had a very rough night of it (and I’ve sent her up to nap for as much of the day as she can).
We don’t know what is going on, and all my experience and speculation has been useless. I have a call in to our hospice nurse, and will discuss the situation with her, see if she has any thoughts on the matter. It could be as simple as a UTI (not that UTI!) , which is a common problem with dementia patients, and known to cause such symptoms. But we take prophylactic measures to limit the chance of a UTI in my MIL, so I would be surprised if that were the source.
Clearly, something is going on. Whether or not it is something we can or should try and correct, we’ll see.
Jim Downey
Filed under: Alzheimer's, Bipolar, Depression, Health, Hospice, Sleep, Writing stuff
We’re back to the train metaphor. My MIL has either been traveling via train, or is waiting for someone to arrive on a train, or is going to catch a train, or just thinks that she is presently on a train (this last happens when she’s in bed, with the bed safety rails up). I cannot help but think that this is her subconscious’ way of understanding that she is in transition from this life to whatever comes after. Why a train? Because when she was a young woman, that’s how she traveled, to St. Louis for shopping, back and forth to college.
* * * * * * * * * * * * *
But she doesn’t stop there. Yesterday morning I went to get her up from her morning nap, and she asked: “Is there a job or something I can do to earn some money?”
“Money? Why do you need money?”
“Well, to call my mother.”
“???”
“I came over here to play, and have been out playing on the grounds. Now I’d like to go home, so need to call my mother. But I was laying here thinking, and realized I don’t have any money!”
“Ah. Well, that’s OK. You can use the phone here – you don’t need any money.”
* * * * * * * * * * * * *
As I walked with the dog in the cold, stiff wind this morning, little pellets of spitting snow falling around me, I realized something I should have noticed a week or two ago: I’m a bit messed up. Lethargic, unmotivated, finding it difficult to concentrate even enough to write short entries for my blog. But I haven’t been sleeping well, either. I’ve been grumpy and short tempered, impatient and always feeling slightly annoyed. In other words, my mild bipolar condition crept into darkness, a slight depression.
Part of it is just the ongoing effort of being a care-provider, of course. Part of it is seasonal, with the grey clouds that settle in this time of year. And part of it is just personal, as we approach December 12th, the anniversary of my father’s murder. I’ve learned to expect something of a downturn this time of year, but it always seems to catch me off guard at first. You’d think after almost 40 years, it wouldn’t come as a surprise.
It’s not the vicious blackness of a full depression, and for that I am thankful. But still, it needs some tending – awareness, being a little more lenient with myself, a little more indulgent. Try to nap when I can. Worry less about my weight, enjoy some favorite foods in moderation. Work when I can, hope that my clients and readers will understand. Be as gentle with myself as I am with my MIL, at least for a while.
* * * * * * * * * * * * *
I was on-call last night. I first heard my MIL stirring around 1:00, but she settled back down again until a little after 2:00. The second time I got up, dressed, went downstairs to check on her.
I put down the safety rails, helped her sit on the side of the bed. At first touch I knew she was running a fever. I got some slippers on her feet, helped her onto the commode that sits beside the bed. Her eyes were watery, uncertain. Her temperature was 2.5 degrees above normal.
“Here, MIL, you need to take these pills,” I said, dropping her usual nighttime meds into the palm of her hand.
She looked at the pills, then at me, then back at the pills. “No.”
“???”
“I’ve already taken my pills. That woman was in here a few minutes ago, and I took them then.”
“Um, no, no one else has been here tonight. Maybe that was just a dream. These are your pills – you need to take them.”
“No!”
This was a completely new one – she’d never refused to take her meds before. “Um, yeah. You need to take those. Now. Here’s some water . . .”
“NO!”
It took me over 10 minutes of cajoling and commanding and pleading to get her to take the medications. She was adamant that she had taken them already, some memory fragment or bit of dream stuck in her head.
And it was almost two hours before I was able to get back to sleep.
* * * * * * * * * * * * *
She’s been cranky today. Stubborn, demanding, a bit petulant.
But also so very weak and confused. Perhaps another TIA. Or perhaps just another step down in her overall condition.
We’ll know more when the hospice nurse comes tomorrow. Or not. You learn to live with that ambiguity, that uncertainty. As best you can.
Jim Downey
(Cross-posted to dKos.)
Filed under: Alzheimer's, Book Conservation, General Musings, Guns, Health, Hospice, NPR, Predictions, Publishing, Science Fiction, Sleep, Society, tech, Writing stuff
As I’ve mentioned previously, I try and catch NPR’s Weekend Edition Saturday regularly. This morning’s show was hosted by John Ydstie, and had a very nice three minute meditation titled Reflecting on a Past Generation which dealt with the differences between his life and his father-in-law’s, as measured in physical weight and strength. You should listen to it, but the main thrust of the piece is how Ydstie’s FIL was a man of the mechanical age, used to dealing with tools and metal and machines, whereas Ydstie is used to working with computers and electronic equipment which is becoming increasingly light weight, almost immaterial.
* * * * * * * * * * * * *
Last weekend, as part of my preparations for tackling in earnest the big conservation job for the seminary, I got a large fireproof safe. I needed something much larger than my little cabinet to safely secure the many books I will have here at any given time. And about the most cost-effective solution to this need was a commercial gun safe, the sort of thing you see in sporting goods stores and gun shops all around the country.
So, since a local retailer was having a big Holiday sale, I went and bought a safe. It’s 60 inches tall, 30 inches wide, and 24 inches deep. And it weighs 600 pounds.
And the retailer doesn’t offer any kind of delivery and set-up.
“Liability issues,” explained the salesman when I asked. “But the guys out at the loading dock will help get it loaded into your truck or trailer.”
Gee, thanks.
So I went and rented a low-to the ground trailer sufficiently strong for hauling a 600 pound safe (I have a little trailer which wouldn’t be suitable). And an appliance dolly. And went and got the safe.
When I showed up at the loading dock and said I needed to pick up a safe, people scattered. The poor bastard I handed the paperwork to sighed, then disappeared into the warehouse. He returned a few minutes later with some help and my safe, mounted on its own little wooden pallet and boxed up. The four guys who loaded it into my trailer used a little cargo-loader, and were still grunting and cursing. I mostly stayed out of their way and let them do the job the way they wanted. Liability issues, you know.
I drove the couple miles home, and parked. And with a little (but critical) help from my good lady wife, it took just a half an hour and a bit of effort to get the safe in the house and settled where I wanted it. Yes, it was difficult, and I wouldn’t really want to tackle moving anything larger essentially on my own. But using some intelligence, an understanding of balance, and the right tool for the job I was able to move the 600 pound mass of metal with relative ease. And it made me feel damned good about my flabby own self.
* * * * * * * * * * * * *
In contrast, the most difficult things I have ever done don’t really have a ‘weight’ to them. Communion of Dreams took me years of hard work to write and rewrite (multiple times), and yet is nothing more than phantasm, able to fly through the internet and be read by thousands. There are no physical copies to be bought, shared with a friend, lugged around and cherished or dropped disgustedly into a recycle bin. It is just electrons, little packets of yes and no.
And these past years of being a care provider, how do I weigh them (other than the additional fat I carry around from lack of proper exercise and too little sleep)? I suppose that I could count up all the times I have had to pick up my MIL, transfer her between chair and toilet, or lay her down gently on her bed. But even in this, things tend towards the immaterial, as she slowly loses weight along with her memories of this life. And soon, she will be no more than a body to be removed, carried one last time by others sent by the funeral home.
How do you weigh a life?
Jim Downey
Communion Of Dreams 