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, General Musings, Hospice, Predictions, Psychic abilities
It was a half hour before lunch yesterday. I checked in on my MIL, who was sitting in the front room, reading. Doing this regularly helps her feel less anxious, gives her a chance to ask questions or if she needs something, since she doesn’t always remember that she can just call for me.
“How’re you doing?”
“I’d like to get up and look out that window.”
This is unusual. “Um, why?”
“Because I want to see what’s so interesting out there.”
“???”
“There was a man here a few minutes ago, and he was looking out that window at something.”
No, there wasn’t – we’d been alone since my wife left for her office 90 minutes earlier. “A man?”
“Yes. There was a man there, looking out. He seemed to be very interested in something.”
* * * * * * * * * * * * *
I was on-call last night. It’s a lot easier to do this now that it’s only a couple times a week. My MIL had been restless early on, so I went to check on her about 11:00.
“You OK?”
“Yes. But I need to get up.”
“Do you need to use the toilet?”
“No. I need to make room for the other people.”
“???”
“All the people who are here. I need to let them use the room.”
“No, it’s OK – this is your room, and they’re happy to let you sleep here.”
“Really?”
“Really.”
* * * * * * * * * * * * *
At 5:30 this morning, she was stirring. I went downstairs to see what was going on. My MIL was over at the edge of her bed, against the rails, trying to reach the lamp on her bedside table (which we keep out of range of her reach on purpose).
“Whatcha doing?”
“Trying to turn on that light.”
“Why?”
“Well, so I can see the other people.”
“???”
“The ones who are here for dinner. I want to go to dinner with them.”
“It’s 5:30 in the morning.” There’s a bright digital clock on the table, but she usually forgets to look at the indicator for AM/PM.
“Then why are the people here for dinner?”
“I’m not sure. I’ll go ask them. But you can go back to sleep, and we’ll be sure to get you up when it is time for breakfast at 8 o’clock.”
“OK.”
* * * * * * * * * * * * *
It was a little after 7:00, I was just sitting down with my second cup of coffee and catching up on the news online. I heard my MIL stirring again, went to investigate.
“Do you need something?”
“I’m trying to see if I can get my head through these bars.” She means the bed rails.
“That’s not a good idea. You could get hurt.” She won’t be able to, anyway, but still it’s not a good idea for her to be trying it.
“Oh. OK. Well, I called my family in Boonville, and the oldest boy is going to come and get me.” I think she’s thinking of my wife’s cousin Bob, who died earlier this year.
“Well, I’ll be sure to come wake you when he gets here. But you can go back to sleep until then.”
“You promise?”
“Yes, I promise.”
Makes you wonder.
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
I got back from my morning walk with the dog to find my wife helping her mom take her after-breakfast pills. Not just encouraging her, but actually placing the pills in her mouth for her, helping her hold up and drink from the glass of juice.
I changed the dog’s collar, put away his leash. Took off my knee braces and the little belly pouch I wear for walking the dog which contains some treats, a small bottle of water, plastic bags for droppings. Removed my light jacket and MP3 player. Went back into the kitchen and leaned against the counter opposite where my wife and MIL were sitting. My wife looked up.
“Another T.I.A.?”
She nodded.
* * * * * * * * * * * * *
From MedlinePlus:
Transient Ischemic Attack
Also called: Mini-stroke, TIA
A transient ischemic attack (TIA) is a stroke that comes and goes quickly. It happens when a blood clot blocks a blood vessel in your brain. This causes the blood supply to the brain to stop briefly. Symptoms of a TIA are like other stroke symptoms, but do not last as long. They happen suddenly, and include
- Numbness or weakness, especially on one side of the body
- Confusion or trouble speaking or understanding speech
- Trouble seeing in one or both eyes
- Loss of balance or coordination
Most symptoms of a TIA disappear within an hour, although they may last for up to 24 hours. Because you cannot tell if these symptoms are from a TIA or a stroke, you should get to the hospital quickly.
TIAs are often a warning sign for future strokes. Taking medicine, such as blood thinners, may reduce your risk of a stroke. Your doctor might also recommend surgery.
National Institute of Neurological Disorders and Stroke
* * * * * * * * * * * * *
They’re coming more frequently now. We saw the first (that we noticed) early this year. I was helping my MIL out to the car for a hair appointment, and all of a sudden she just slumped, slipping straight down, knees buckling to the pavement before I caught her.
The first time you see a T.I.A. hit someone, you’re completely bewildered by it. Well, at least I was. My MIL, who was capable of standing and stepping with care and help, and who is usually somewhat plugged into her immediate surroundings, just seemed to “shut down”. I got her in her chair, but she slumped over. She seemed unaware of anything around her, barely responsive to my questions and prodding. It was early in the day, but she was acting like it was the very end of the evening, when she would usually be deep into ‘sundowning‘, exhausted and ready for bed. So, I put her to bed.
Then I called my wife, did some research. I had thought it was likely a T.I.A., and brushing up on the available info confirmed it. So did my MIL’s doctor, who my wife called.
What to do? With someone of my MIL’s age, and with her other medical issues? Nothing really to be done. Bed rest, note it. Roll with it.
* * * * * * * * * * * * *
When we’d had a couple more T.I.A.s this summer, and with the other indications we’d seen (some of which I’ve mentioned), we decided the time was here to again seek Hospice. In the month since, my MIL has had several more T.I.A.s, about one a week. Each time, the treatment is the same: get her into bed, let her sleep it off. After a couple of hours she’s back to what passes for normal. We note it, and are sure to tell the Hospice nurse when she comes for her weekly visit.
A T.I.A. itself isn’t really that big a deal, as noted on that site cited above. It is, however, something of a warning. As the Wiki page on T.I.A. states under “Prognosis”:
Patients diagnosed with a TIA are sometimes said to have had a warning for an approaching cerebrovascular accident. If the time period of blood supply impairment lasts more than a few minutes, the nerve cells of that area of the brain die and cause permanent neurologic deficit. One third of the people with TIA later have recurrent TIAs and one third have a stroke due to permanent nerve cell loss.
* * * * * * * * * * * * *
So, we wait. For either another T.I.A., or a full-fledged stroke. And we try to make her days as comfortable and enjoyable as we can, within the constraints of our own exhaustion and need to pace ourselves for what could yet be a long haul.
And in the meantime, tomorrow is our 20th wedding anniversary. For the most part, observation of same is postponed until later by tacit agreement between my wife and I, though we will make a favorite meal and bake a cake. We have one another, the details will sort themselves out later.
Jim Downey
Communion Of Dreams 