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.
Back in August I mentioned the First Habanero I got from my garden this year. Well, it wasn’t the last. Since then I have been harvesting some now and then as they became ripe, passing them on to friends and family, drying some to grind up to use in the place of black pepper (this is commonly what I do for most things I eat – yeah, I am that crazy.)
Well, this past weekend we had our first frost. So Sunday I went out and harvested all the remaining peppers, whether they were fully ripe, still dark green, or anything in between. This is what I got:
There are over a thousand peppers there. No, seriously. I know this because I have been keeping a rough count as I have used them this week to make various and sundry hot sauces.
The first one was intended to be a jelly, actually. Using this recipe. But something somewhere went wrong, and it just turned out to be a delicious thick Raspberry-Habanero sauce, suitable for glazing meats, adding to other recipes, drizzling on a cream cheese or a salad. I made 6x the batch, and about doubled the amount of habaneros, using about 36 – one for each of the half-pints of finished sauce. It’s hot – these are damned hot peppers, as I noted before – but it is within the range of what I would characterize as “normal human food”.
Then there was the batch of stuff I made today . . .
No recipe, specifically, though somewhat similar to many such recipes you will find online. I’ve made hot sauces enough to have a ‘feel’ for what works, what doesn’t, what I can get away with, what is going too far.
And boy, did I go too far.
Usually, this kind of recipe would call for anywhere up to 10 or 15 habaneros per batch. I made what would be considered 4x a usual batch. I used 300 habaneros. No, that’s not a typo – three hundred. No, they weren’t all fully ripe, so they weren’t all at peak heat on the Scoville Heat Unit scale. But roughly one in five were. In other words, I used as many fully ripe, super-hot Red Savinas (rated about 580,000 SHU) as the normal upper limit for regular habaneros (rated between 100,000 and 200,000 SHU) per batch. And then four times that number of unripe habs ranging in heat from probably 50,000 SHU to almost full ripe heat. There are about 14 habaneros in each half-pint jar of sauce. Or something like almost one hab per tablespoon of the stuff.
This stuff is so intense that I put a drop of it on my tongue to test it and it took my breath away and sent me running for the milk (dairy products are the most effective way to cut the burn from capsaicin). This stuff is so intense that it gave me chemical burns on my hands. No, of course I wore gloves. For all the prep and cooking. The burns were from washing the dishes, for which my normal gloves are too short. After rinsing the gross residue from them, the leftover bits of sauce added to the sink full of soapy water was still so powerful that the more sensitive parts of my hands got burned. When all that was done I went out and bought longer medium-weight chemical gloves.
Because I still have at least twice as many remaining habs to use. Tomorrow I make up a different sauce, using a different set of spices and tomato sauce in lieu of water . . .
Hehehehehehehehe!
Jim Downey
I just lost my temper. I just had a full-fledged screaming fit, eyes bulging, veins throbbing, face beet red. At a 90 year old woman who knows no better, who is confused by the world around her due to Alzheimer’s, who is likely dying.
Why did I just do this reprehensible thing, and why on earth am I admitting to it in a public forum?
The first part of that question is the more difficult one to answer. I did it out of frustration, exhaustion, and fear. Frustration because she (my MIL) has been exhibiting compulsive behaviours all morning which drive me nuts (tearing things out of magazines, wanting to write on the back of photos in the little album she has, ‘cleaning’ up some lunch mess with a kleenex and in the process smearing stuff all over the table top and making more work for me.) This sort of thing rapidly gets under my skin – it’s like some small kid pestering you with a behaviour that they know will drive you nuts. Except, of course, that in this case she doesn’t really know what the hell she is doing.
Exhaustion is obvious. Though I have been getting a lot more sleep, this is the end of years of being a care-giver. I do not have ‘reserves’ to draw upon. I only have a worn and fragile veneer of sanity. I have had the discussions with her which tripped my outburst hundreds of times. Sometimes, like this one, I just snap.
Fear? Because she is dying. Because in some sense, while I know that we have done everything humanly possible to care for her, and extended her life by years . . . I will still feel a sense of failure as a care provider. I hate to fail at things. I fear that others will think less of me because of that failure.
So, why tell on myself, here, in this way? Because this is part of what it means to be a care provider. You lose your temper. You scream, you shout, you act in mean and petty ways. You will lose your temper, or your sanity, now and again. And if you are to be effective as a care giver, you then have to catch your breath, forgive yourself, and get on with the task at hand. None of us are saints. We’re all frail, fallible human beings. You have to accept that, if you have any hope of getting through this. Because you can’t just take the day off to go relax, or turn this project over to someone else. You have to deal with your own outburst, then get over it as best you can. You have to keep going, whether you want to or not, whether you feel fear, or exhaustion, or shame.
Jim Downey
(Cross posted to UTI.)
…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
Thursday morning the hospice nurse (Lisa) came for her weekly check-up for my MIL. She went through, did the usual stats, talked with my MIL about how she was feeling, whether she had any pain, et cetera. I like Lisa, she has a quiet and caring way I’ve found typical of hospice nurses.
After she was done, my MIL wanted to lie down and rest a bit, so I helped her with that while my wife went out to chat with Lisa. Once I had my MIL settled and secure, I joined them. It was the usual conversation, filling in Lisa on our observations of how my MIL had been doing the past week, letting her know of any TIA episodes and whatnot, discussing any additional scheduling and so forth for the coming week. Lisa had been unable to bring some of my MIL’s meds with her, since the pharmacy at the Hospice hadn’t had a chance to get them filled. She said that she’d drop them by late in the afternoon.
The rest of the morning was routine, and we had our regularly-scheduled respite care that afternoon from 2 – 6. My wife wanted to work, and I had errands I needed to run, so we agreed to meet at 4:30 for an early dinner at the brewpub near her office.
Over sandwiches and a good dark ale, sitting out on the patio of the brewpub, enjoying a lovely warm autumn afternoon, we talked about my MIL’s health. No, not so much exactly how she was doing (we compare notes on that regularly), but of the likelihood that the end is near, and what that would mean for us and the other family members. Even with a fair amount of chatter around us from other patrons, it was a quiet and relaxed conversation, exploring the emotional landscape of an upcoming death. Both my wife and I have lost other family members often enough that we know this terrain. And we know that while we will grieve, and need to learn to re-integrate ourselves back into regular society, there will also be a sense of relief that this long and difficult time is over.
And that evening, when Lisa dropped off the ziplock with the pill containers from the pharmacy, she also left a handful of different publications from the Hospice, all of them variations on the theme of ‘how to prepare for approaching death’. Yeah, we’d seen most of this material previously in one place or another, but it was evident that she felt we needed to review it now. Getting that was an outside confirmation of what my wife and I had discussed previously, and a lot of what I’ve written about in recent weeks. I suppose we really are getting close.
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 