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
It has been a difficult week in caring for my MIL. As noted previously, we went to a three-day trandsdermal patch to help with the pain associated with her aspiration and breathing difficulties. And that has worked pretty well. But as I suspected would happen, after her trial period with the oxygen she didn’t want to use it any longer – even when she was laboring to breathe and I offered it to her, she declined. Only once, when she was having a coughing spasm, did she consent to put up with it again. This means that she has continued her slide, probably at a faster pace than were she using the oxygen. It is a tough thing to watch.
* * * * * * * * * * * * *
After a particularly rough patch of it yesterday morning, I was helping her from the toilet to her usual seat in the front room, where she likes to sit and look at magazines. As we transitioned from the wheelchair to her comfy chair, and I got her settled safely there, she looked up at me, her frail thin arms still around my neck, her light brown eyes clear for a moment, and said “thank you, son.”
In the over twenty years I’ve known her, in the twenty years I have been married to her daughter, she has never once before called me “son.” In fact, since my own parents died almost 40 years ago, no one has called me that for a very long time. It was a strange word to hear directed my way. And it touched me like no other thanks she has ever offered.
* * * * * * * * * * * * *
She had a restless night last night. I was ‘on call’, and consequently didn’t get a lot of solid sleep. After I had been downstairs early this morning, trying to get her to settle down through one of her (fairly rare) combative fits, it hit me: we’d screwed up and not replaced her duragesic patch late afternoon, like we should have. Meaning that the opioid in her system had been tapering off for about 12 hours, with nothing else to mitigate the effects of pain. And with all the other difficulties her brain faces, that extra pain causes unpredictable effects.
I mentioned this to my wife, who woke somewhat as I came back to bed. Shortly thereafter, we were back downstairs, getting a new patch on my MIL, and getting her something else to relieve her pain more quickly than the patch would kick in. As we were getting her tucked back in, she whispered to my wife, asking: “who is that strange man?”
* * * * * * * * * * * * *
Lisa, our hospice nurse, did her routine check of vitals, asked the usual questions about changes we’d noticed. After spending an extra long time with the stethoscope, she looked over to me and my wife, an honest but pained look in her eyes.
Later, after all the rest was done, she chatted with us on the front porch, my MIL again sitting in her comfy chair in the living room. “Yeah, there’s a lot more crackling all over her lungs.”
This came as no surprise. I’d been able to hear it myself, just in my MIL’s routine breathing. But it was a substantial change from the aspiration congestion being confined to just one part of one or another lung.
Then she added: “And her heartbeat is much more irregular.”
Ah. I asked, already knowing the answer: “Is that . . . significant?”
“Yes.”
* * * * * * * * * * * * *
My wife’s older sister is coming to visit from California beginning Thanksgiving weekend. Last week I was worried that my MIL might not last that long, given how things had been going. The beginning of this week I had changed my mind, since the duragesic patch seemed to help so much.
Now I’m not sure again, even though we are a week closer to Thanksgiving.
That may be the toughest thing about this, the not knowing. I mean, there are few of us who know in advance the how and when of our deaths – I’ve long accepted that, having lost both parents suddenly (and separately) just as I was on the verge of adolescence. But when you are dealing with a terminal illness, such as hospice usually aids with, you usually have some kind of time-frame that everyone understands. This is different – this isn’t cancer, or a fever, or some other relatively simple cause & effect. This is a general debility, prolonged by our caring and care giving in a way that both breaks your heart and makes you proud.
Jim Downey
(Cross posted to dKos.)
Filed under: Alzheimer's, Book Conservation, General Musings, Health, Hospice, Predictions, Sleep
Last Friday I dropped a note to the Library Director I’ve mentioned in this post about this big project, basically asking why I had yet to see payment for my work when I’d been told I should see it as early as 10/19. I got the following reply right away:
Thanks so much for letting us know. We turned in the invoice and will go tracing the situation. Again I apologize for this delay. You should not have to ask these things. We are in a transition period with a “temporary” agency helping us out in our business office until we can hire some staff. I’ll ask Mr. R to also help us with this situation and we will write you probably next week with any details.
*Sigh* Beginnings are fragile times, as we learn to dance with someone new. Is this delay a portent of things to come – will I always have to hassle them to pay their bills on time? Or is it just a fluke, an unfortunate glitch which means nothing? I replied this morning:
Thank you – any help you can provide to expedite payment will be greatly appreciated. I’m somewhat distracted by our hospice care-giving for my mother-in-law at this time and don’t have the attention to spare trying to track such things down.
So we’ll see. And I mention this because it does sort of sum-up how I am feeling now, as we enter into the closing weeks of my MIL’s life: distracted, tired. Yes, we’re now getting more sleep, and that helps a great deal – but still, the emotional stress has cranked up along with the demands of routine care giving, as I have tried to outline in all my posts related to this. I do have work to do, as does my wife, and then there is the routine of just getting through the needs of ‘normal’ life. But to a certain extent such concerns fall by the wayside as we turn more of our focus to giving my MIL a good death, as comfortable and pain-free as possible – all the while trying our best to pace ourselves, since we have no way of knowing exactly how much further this marathon has to go.
Jim Downey
*** Update, 10:00AM November 5 ***
Got word back from the client:
Good news. The check was sent out Friday (November 2), so you should receive it within a day or so. As suspected, the turbulence in our business office is to blame for the delay. We apologize again.
So, provided nothing gets ‘lost in the mail’, looks like we’re off to a decent start. With institutional clients, I usually expect them to take upwards of a month to process payment, and this client would not be tardy.
Fingers crossed.
Jim D.
…about care-giving and throw it out the window.
At least that is somewhat what it feels like as we’re entering what is likely the final weeks of my MIL’s life. The routines we’d established previously (Alzheimer’s patients typically like routines – it helps keep their world a little more ordered, a little more secure and predictable in amongst all the other changes they are experiencing) are starting to break down. My MIL is becoming somewhat less predictable, her sleep/awake cycles disrupted, et cetera. What were simple things she could do for herself now require greater supervision and instruction. She tires more easily, and the “sundowning” effect I’d mentioned previously tends to occur earlier in the day.
And there are the medical indicators, as well. Lisa, the hospice nurse, was here this morning for her weekly check-up. Following that, we chatted for a bit outside. As I wrote a week ago, she also sees the signs of end of life approaching. Drop in blood pressure. Decreased heart rate. Congestion in her lungs. It probably won’t be long, and Lisa wanted to make sure we have what is necessary to keep my MIL comfortable through it.
She also told us that we’re doing a marvelous job in providing care. Bittersweet, but as I said back when we started this round of hospice, good to hear.
Anyway, as we enter into these final weeks, the routines to which we’ve all become accustomed are starting to dissolve. To use a musical analogy, we’re shifting from playing well-known and rehearsed classical pieces to playing something which requires more improvisation – it’s not ‘free jazz‘ yet, but that’s where we’re likely headed. As the end grows closer, we’ll likely need to discard the sheet music altogether. This will be difficult, but will likely only last for a limited amount of time. I’m comfortable with predictable routine, and largely prefer to have some order to my life, but know full well that I am capable of dealing with uncertainty for at least a while.
At least that’s been my experience so far. I guess we’ll see how it goes this time.
Jim Downey
Made a routine trip to the big-box store this morning, to stock up on catfood. I got one of those large boxes of 48 cans of different flavors my cats like. And when I went to put it away, the “easy open” tab didn’t. Instead, I wound up just destroying the whole box, ripping and tearing, so I had access to all the cans included.
It felt wonderful to be so destructive.
There are days like that for all of us. After a trip to the store, dealing with idiots who don’t know how to negotiate a check-out line. Or sitting behind the twit at the stoplight who somehow misses that the light changed and the cars in the other lane are passing him, getting his shit together just in time to slip through a yellow light and leave you sitting there for another cycle. Whatever it is, you just want to take out your frustrations in a safe and relatively sane way.
I have these days a lot. Part of it is just the toll of being a long-term care provider for someone who has a tenuous grip on reality but can be amazingly stubborn and focused in her determination to do something unsafe (or just highly annoying). But part of it is simply the effect of long term sleep disruption/deprivation that goes with providing care around the clock. I’ve known this for ages, and written about it several times. Anyone who has had insomnia, lived with an infant, or just had a bad string of luck sleeping for a few days will understand completely how grumpy and intolerant it can make you.
Well, it’s worse than you thought. At least, it’s worse than the people who study neuroscience thought:
Walker and his colleagues had 26 healthy volunteers either get normal sleep or get sleep deprived, making them stay awake for roughly 35 hours. On the following day, the researchers scanned brain activity in volunteers using functional magnetic resonance imaging (fMRI) while they viewed 100 images. These started off as emotionally neutral, such as photos of spoons or baskets, but they became increasingly negative in tone over time—for instance, pictures of attacking sharks or vipers.
“While we predicted that the emotional centers of the brain would overreact after sleep deprivation, we didn’t predict they’d overreact as much as they did,” Walker said. “They became more than 60 percent more reactive to negative emotional stimuli. That’s a whopping increase—the emotional parts of the brain just seem to run amok.”
The researchers pinpointed this hyperactive response to a shutdown of the prefrontal lobe, a brain region that normally keeps emotions under control. This structure is relatively new in human evolution, “and so it may not yet have adapted ways to cope with certain biological extremes,” Walker speculated. “Human beings are one of the few species that really deprive themselves of sleep. It’s a real oddity in nature.”
In modern life, people often deprive themselves of sleep “almost on a daily basis,” Walker said. “Alarm bells should be ringing about that behavior—no pun intended.”
Gee, ya think?
Sheesh. I need to go find another box to destroy or something.
Jim Downey
I’ve written a lot about the toll that comes with being a full-time care provider for someone with Alzheimer’s, and how the lack of sleep completely compromises my ability to think and function. I’ve also mentioned that I worry about whether or not I’ll really be able to pick up the various threads of my life again, once my care-giving time is over.
Well, I know now that I can bounce back. At least to a fair degree. This past week, between having the new overnight aide and my wife generously being “on call”, I was able to get a more-or-less normal amount of sleep for five nights in a row. And this week I was also able to get a lot of time in doing conservation work, with very good results.
See, I had to deliver the first batch of books back to the Seminary, so they would have things to show off to their Board and donors the first of next week. It was important that I get enough work finished, and that it looked impressive. And I was able to do just that, billing 30 hours (11 of which were on Thursday alone) without killing myself.
And the feedback I got when I delivered the books yesterday was quite satisfying. After going through the books with the Head Librarian and their Head of Acquisitions, explaining what work had been done and being complimented on how everything looked, I handed over the invoice. The Head Librarian looked at the bill, looked at the books spread out on the big library table, and then looked at me and said: “That’s a great price for all this work.”
That’s *exactly* what you want to hear from a client when you hand him a substantial bill. You want them to always feel like they got a deal. He will now take that enthusiasm for the project to the Board and their donors, and we’ll be off and running on making sure that this whole collection is properly treated.
Yay!
Jim Downey
Filed under: Alzheimer's, Book Conservation, Feedback, Habanero, Health, Hospice, Science Fiction, Sleep, Writing stuff
I’ve been busy this week trying to finish up the first batch of books for the new client, and have to deliver them tomorrow. So I apologize if postings here have been a bit light. But I thought I would post some updates on recent events . . .
My MIL is still doing pretty well, in spite of my concerns in Fever. Her fever did abate for a while, but yesterday it was back up, and higher than previously. We still cannot identify the source for it, but the Hospice nurse will be here today to do a check-up, and we’ll see if she has any ideas.
I’ve slept every night this week! Amazing what a difference it is making already, even if I haven’t fully settled back into sleeping deeply on the nights when the respite person is here. Normally, my wife and I will split the other four nights a week, but she helped me out by taking the Tuesday night shift so I could be well rested for doing my conservation work (see above). I will probably still need months of regular rest to be fully restored, but at least now I no longer feel like I am constantly dragging. Remarkable.
Hits here to the blog crossed the 6,000 level yesterday. As it turns out, downloads of the novel may well have crossed that threshold yesterday as well – I’ll know later today. It’s close, anyway.
Oh, one last item . . . I wrote about the First Habanero some weeks back. Well, now I’m happy to say I’ve harvested and dried and given away dozens of the Red Savina habs, and have even gotten a few of the Devil’s Tongue. The garden season is wrapping up, but I hope that I’ll still get a bunch more ripe habs, and will undoubtably have a whole bunch of green ones (which have a nice flavor but don’t develop their full heat).
Well, I need to get back to work. May not post again until tomorrow night, or this weekend.
Jim Downey
As I mentioned Saturday, we now have someone coming in to stay overnight three nights a week. Seems like a nice woman, but it will still be a little weird to have a stranger here on Mondays, Wednesdays, and Fridays – and there’s a chance that it won’t work out with my MIL, if she freaks out over having this strange person help her in the middle of the night.
That was one of the main reasons we’d held off on taking this step earlier: we weren’t sure whether the trade-off of getting a night’s undisturbed sleep would be worth whatever disruption it caused my MIL that we’d have to deal with the rest of the time. But when we met with the Social Worker from Hospice, a nice woman by the name of Lori, she was fairly assertive that we needed to take this step, just for our own health and sanity. Getting an outside professional’s perspective helped, and affirmed what friends and family had been suggesting for some time.
The other main reason we’d held off in doing this was insurance. Now, let me get my biases right out in front: I think that most insurance is a scam, designed to scare people and sell them policies which provide little coverage and plenty of loopholes for the company to escape payment. I know that this isn’t always the case, and yes I have always had plenty of insurance – I just accept it as a necessary and unpleasant part of life. Our experience in this case proved not to be an exception.
See, my MIL has a long-term care policy which carried an option for an ‘alternative care plan’, meaning something other than a nursing home, which could be set up with the agreement of the company (and would save the company money, since it was a lot less than what a nursing home would cost). She’s had this policy for decades. Under the provisions of the plan, the company would pay up to $xx.xx dollars per day for in-home care assistance. We wanted to have them help pay for having a home-health aide in overnight a couple of times a week. Except that the cost of doing so was a little less than twice what the per diem specified in the policy. But hey, no problem – since it is overnight, the billing could be broken into two days, and fall under the specified coverage. Logical, right?
Um, no. Not as far as the insurance company was concerned. At least that was the position they took when they denied our request. My wife argued with them. For a while. Because honestly, we didn’t have the energy to fight with them over the long haul, given that we’re exhausted from being care-providers. It was easier to just curse the bastards and drop the matter – what the insurance company counts on, no doubt.
Except then we talked with Lori, and she made her point about us needing more rest. Further, she asked about any insurance policies that might allow for some in-home care. We explained the situation we’d gone through with the insurance company earlier this year. She nodded, asked to see the policy. Looked it over. Looked at us, said, “Let me handle it. The sad fact is, I have a lot more success than our hospice clients do with these things – the insurance companies know that they can’t just wait me out.”
Three weeks later, we had a tentative agreement in place. A week after that, the paperwork was all signed. The company will indeed pay for someone being here three nights a week, billed under the per diem for six days. Starting tonight.
Thanks, Lori.
Jim Downey
We found out yesterday that starting Monday, we’re supposed to finally have someone providing respite care for us overnight three nights a week (Monday, Wednesday, Friday). More on how that came about later.
But I wonder whether we’ll actually get there. Or, if we get there, whether we’ll be taking advantage of this service for more than a brief period. See, I think that there’s a good chance that my MIL may be coming to the end of her life.
For the last couple of weeks she’s had a sporadic fever of indeterminate origin. Not a lot, just a degree or so over her normal temp. And it would come and go. The hospice nurse has noted some congestion in her lungs, but nothing else which would account for it. But in the last couple of days it has trended higher, and been more consistent. Today it has steadily crept higher each time we’ve taken it, and doesn’t seem to be responding to any of the usual meds which will combat fever. It’s still fairly mild, just about two and a half degrees more than normal, but something is going on.
And in the last few days she’s talked more and more about being concerned that her family knows where she is so they can come get her. More than once she’s indicated that her mother “just left” and would be returning soon. When we tell her that everyone in the family knows where to find her, she’s happy. It’s as if she were a little girl, excited about getting to go on a trip, waiting for something to happen.
And we’re waiting with her, unsure how to proceed, wanting only to have her happy and knowing she is loved.
Jim Downey
Communion Of Dreams 