I’m feeling a bit wretched; both my wife and I have a touch of some GI bug, and it isn’t helping matters. So, just a brief couple of notes . . .
Over 4200 downloads of the novel so far. Feels a little weird.
And this blog is getting more attention. We’ll pass 3500 visits sometime in the next couple of days. And that doesn’t include anyone who gets a ‘feed’. Nothing like the traffic over at Unscrewing the Inscrutable (where I post pretty much daily), let alone Daily Kos (where I post occasionally), but still not bad for just a private blog.
Maybe more later. Maybe not until tomorrow.
Jim Downey
About 15 months ago, I wrote the following:
I sit, listening to the labored breathing coming from the next room. The end will come probably sometime this next week, likely as the result of a fever and while she is asleep. As deaths go, it’ll be one of the best possible, with minimal pain, discomfort, and fear.
*******
…because some short time ago, when it became clear that my mother-in-law was not going to recover from her latest medical problems, my wife and I decided to enter her into Hospice.
I knew of Hospice as an medical movement designed to make the last weeks or months of life as comfortable as possible, with a primary emphasis on palliative care. And this it is. But I’ve discovered that it is so much more.
Our “hospice team” includes a nurse who comes by as often as we need her. If that’s once a week, or twice a day, it doesn’t matter. We have on call personal care aides, a chaplain, a social worker (to help me and my wife with any of the issues surrounding the imminent death of a loved one), as often as we need them. If we need any medical equipment, from a hospital bed to oxygen, it’s arranged for. All prescribed meds for her condition are delivered to our door. Basically, anything we need or want which pertains to my mother-in-law’s health is provided. And it is all 100% covered by Medicare.
And it is a shame that you have to die to get this kind of medical care.
As is clear from my other posts, my MIL actually didn’t die. Yeah, she’s one of those rare people who “graduated” from Hospice care. Basically, we were too good at providing care for her, and she just wasn’t ready to go yet. So, after the initial 90 days of being enrolled, she was dropped from the Hospice program administered by one of the local hospitals. I’m actually still a bit upset with the way that transition was handled – my wife and I very much felt like we were abandoned. The extensive network of support we’d had just disappeared, leaving us unsure how to proceed (because while my MIL wasn’t ready to die, neither was she going to ‘get well’, and her care needs had increased significantly.)
Anyway, now we’ve noticed another downturn in her condition, and one of the significant markers of end-of-life has shown up: my MIL has dramatically increased how much time she spends sleeping, with no indication that she is suffering from any secondary illness or infection which would explain it. Her afternoon nap has gone from 90 minutes to typically three hours (or longer). And she now wants to nap in the morning after breakfast most mornings, for an hour and a half to two hours and a half. Noting this, my wife sent me this: Eldercare at Home: Chapter 28 – Dying at Home which contains the following:
The end of life cannot be predicted for any of us. We do not know when it will happen, who will be with us, how it will occur, or what we will feel. However, we do know some useful things about how many people die and this can help put your situation in perspective.
Many misconceptions exist about what can happen during the final days and weeks of a person’s life. One stubborn myth about dying is that the person will die from only one cause. In some cases this is true, but many older people do not die from one major event or for only one reason. Instead, they die because of many different factors that combine to slow down the body’s important systems, such as the heart and lungs. In a sense, the physical body slowly “gives up.”
*******
Certain physical signs warn us that the end of life is growing close. Most people with an advanced, chronic illness spend more time in bed or on a couch or chair. People with any type of advanced disease eat less food, and drink fewer liquids. They also sleep more, lose weight, and become much weaker.
Not every warning sign is physical, however. People may talk about “leaving” or “having to go.” Their dreams make them feel as if they want to “get going” or “go home.” Although this does not occur in every situation, this language and the emotion behind it are ways of talking about dying. The person also may ask to see special friends or relatives, and some haziness or confusion can occur as each day blends into another. Keeping track of the day of the week becomes less important, as do other daily living details.
My MIL has been doing more of this, though it is difficult to really say whether it is pertinent, since she suffers from dementia. Still, it is good to see it described, to be able to point to this document to help friends and family understand a bit better where we are (the excerpts I cite are just one small bit of that chapter – and the whole thing is worth looking at).
And it helps some with my ambivalent feelings towards Hospice, which, in spite of what happened to us, I know is a good program. I just wish I knew when to turn to them again – having the full support followed by being dropped like a hot potato isn’t something I think I can take emotionally again. Not at this point, anyway.
Jim Downey
Just a brief excerpt from an AP news item about care-giving for Alzheimer’s patients:
More than 5 million Americans are living with Alzheimer’s disease. It afflicts one in eight people 65 and older, and nearly one in two people over 85.
Worse, as the population ages, Alzheimer’s is steadily rising. Sixteen million are forecast to have the mind-destroying illness by 2050, not counting other forms of dementia.
Those figures are cited repeatedly in the push for more research into better treatments. But a frightening parallel goes largely undiscussed: As Alzheimer’s skyrockets, who will care for all these people?
And will the long-term stress of that care set up an entire population — once-healthy spouses and children — to suffer years of illness, even early death?
“I don’t think society and policymakers have fully grasped the future magnitude of what we’re up against, and how massive an operation we have to begin … to deal with this,” says Dr. Richard Suzman of the National Institute on Aging.
Go read the whole thing. It’ll break your heart, but you need to know this stuff – chances are your family will have to deal with one of its members who has some form of senile dementia, and very few people are ready for it when it happens. Trust me on this.
Jim Downey
This is a slightly-edited excerpt from a message I sent yesterday to the rest of the family, about my mother-in-law’s current condition. I offer it as part of my ongoing documentation about being a care-giver for someone with Alzheimer’s/Dementia, and hope that it may benefit others involved with care-giving (either directly or indirectly) .
Our strategy of lessening her anxiety has been good, I think, though one possible result of not trying to “ground” her regularly is that she seems to be losing her grasp on reality more and more. She has good days and bad days, but I can usually count on needing to just sit and re-assure her at least once each day, for 45 minutes to an hour. It has also become common for her to ask to “go home” when we get through watching some movie in the evening, or when she wakes up from a nap. When we explain that this is where she lives now, and that my wife and I care for her and make sure she’s safe, she’ll get very happy (almost teary-eyed) and thank us. But that will usually only last for a few minutes, unless you get her attention focused on something else. Likewise, due to her inability to focus and her failing memory, she needs constant supervision and basic repeated instruction when doing anything such as brushing her teeth or bathing.
She often asserts that she came here with other people, and that she wants to call them to ask them to come get her. If queried on this, she’ll frequently identify her mom and sister as the people involved (who died 38 and 16 years ago, respectively). Any effort to explain that they are no longer living is met with skepticism, no matter how phrased, and we’ll need to redirect her attention to other topics in order to get her from dwelling on where “her family” is. It seems very much to be the case that she is regressing to those very early relationships as security, as her more recent memories become more confused and clouded. At night, when she wakes and needs to use the toilet, she’ll usually ask whether my wife or I are her parents when we come into the room. We no longer ask her if she knows who we are, but I get the sense that she’s pretty much lost our names, just identifies us by sight.
To see all the related posts, click on the “Alzheimer’s” tag at the bottom.
Jim Downey
A few days ago I wrote about the difficulty of accomplishing anything as my mother-in-law slowly slips away due to Alzheimer’s, and the impact that has on myself and my wife.
Well, it’s taken a significant turn for the worse. For whatever reason, her condition has worsened substantially in the last few days, to the point where she now frequently asks to “go home”, doesn’t recognize me or my wife for who we are most of the time, and has long and elaborate “memories” of things which she thinks she has just done (going to see a movie, taken a trip with friends) earlier in the day. Her tenuous grip on reality has slipped to almost nothing.
I wind up spending long periods of time just talking with her, reassuring her that she’s here at home, safe and we’re taking care of her – we’ve long since given up trying to ‘correct’ her information or view of the world. This is very intense and demanding, and when coupled with increasing unpredictability in her sleep habits, means that I am increasingly low on sleep and energy and focus and initiative.
Still, I have a creative drive that wants outlet. Very frustrating.
Jim Downey
Filed under: Alzheimer's, Bipolar, Book Conservation, Depression, Harry Potter, Health, Sleep, TGV Rockets, Writing stuff
One of the hallmarks of major depression is the energy-sucking nature of the disease. For someone in the throes of such a depression, it becomes almost impossible to even get out of bed, and regular correspondence, routine tasks, et cetera, all slide by the wayside, piling up and contributing to the downward spiral.
I suffer from a mild form of bipolar disorder – what is commonly called manic-depression. The arc of my mental state can be influenced by many things, but typically runs about 18 – 24 months through a full cycle. I have never suffered through a full major depression, but I’ve been down into it far enough to have glimpsed that hell, and know I want no part of it. I’ve learned to cope with my condition, and know full well that if I were ever to slip further I would want professional help to deal with it.
One thing I find in being a care-giver for someone with Alzheimer’s is that as my charge slips further into dementia herself, the toll that it takes on me and my wife comes increasingly to resemble suffering a major depression. Basically, with the prolonged lack of sleep and growing effort to help her comes an increasing difficulty in having the energy to accomplish anything else. Last week I read the new Harry Potter book, and the effort left me completely exhausted and suffering a prolonged migraine by the end of the week. If I can get the focus to spend a few hours at the bench doing book conservation in a given week it is a minor miracle. Just contacting clients or suppliers becomes a task I cannot confront. I’ve promised someone an article on Pat Bahn of TGV Rockets, which I really want to write, but finding the energy to do so is another matter altogether.
And yes, my own mental health is stressed by all of this. I am constantly at risk of falling into the trap that I should be doing more, should be stronger. That’s my image of myself. And when I put my mind to it, I really can accomplish some remarkable things. So the temptation is to push myself further, to goad more work out of myself, to criticize myself for being “weak” for not having the focus or the energy to do this or that. That is a dangerous path.
So, I do what I can, when I can, and try and cut myself some slack the rest of the time. And this afternoon, while my mother-in-law naps, I think I will can some tomatoes. There is more conservation work waiting for me, and other writing I should do. But the tomatoes are ripe and ready, and it will be a nice change from the other tasks.
Jim Downey
Here’s a small insight into caring for someone with Alzheimer’s/Dementia: any change to routine will have repercussions for a day or more.
As mentioned previously, I attended the Heinlein Centennial this past weekend, while my wife was performing with the North American Welsh Choir. My wife’s sister made arrangements to come and care for my mother-in-law while we were to be gone. This is essentially what we have to do whenever we want to both be gone anywhere, and logistically it is problematic: my sister-in-law not only has her own life, but she lives on the west coast and has to fly in to be here. Given that she’s a couple hours away from an airport on her end, and we’re effectively the same here, it’s more than a little bit of a hassle.
But even beyond that, our being gone presents other difficulties. Specifically, it throws my mother-in-law ‘off’, compounding the problems presented by her disease. My sister-in-law is good about rolling with this over a short time period, but then it happens again when we get home – which tends to negate the psychological benefits of being able to get away for a short period of time. An example from this afternoon: My mother-in-law had been napping after lunch, as is her custom. We have hospital rails on the sides of her bed, and a simple ‘web’ of 1″ nylon straps over the top, from railing to railing, to prevent her from getting out of bed. But she only sometimes remembers that she needs help getting out of bed, let alone standing or moving. As I told a friend in an email a bit ago:
*sigh* Been unbelievable this afternoon.
About 2:45 I heard her moving around. Not usually a big deal, since she will shift position. But then I heard something concerning, so went to investigate.
She had managed to slide her legs up to mid-thigh out between the bars (which are horizontal), dangling them over the side of the bed. She’d then gotten tangled up in the webbing, trying to sit up. I asked her why she didn’t just call if she wanted to get up, and I got a snarly response about her not needing any help, et cetera.
After sitting there and letting her try to untangle herself and get her legs back in bed, I got her sorted out. She was still snarly, said that I just wanted to keep her in bed for no reason, that she could do just fine, thank you very much, if I’d get ‘that stuff’ out of the way. Fine. I removed the webbing, put down the rail. Some minutes later, she finally admitted that yeah, maybe she did need some help to get up and onto the potty.
She’s suitably chagrined now. That *might* last the rest of the day. Or maybe not.
That’s just one example. The whole thing, from start to finish, took over an hour. And through it I had to explain repeatedly where she was, that her mother wasn’t here, who I was, et cetera. Some of this is ‘normal’ (perhaps I should say ‘typical’) behaviour – she’ll fuss with the webbing or some such, rather than calling for help. But this is the first time that she’s tried to slide between the bars of the railing, and it is rare for her to be hostile like that for any length of time. We’ve seen other examples of behaviour that are somewhat extreme as well. I can’t prove it, but I’m certain that this is all fallout from the change first of our being gone and my sister-in-law being here, and then her being gone and my wife and I being here.
Frustrating, particularly in that it disrupts my ability to think and write further, meaning some of the stuff I wanted to get done today (such as writing some additional posts about the Centennial) isn’t going to get done. So it goes.
Jim Downey
Filed under: BoingBoing, Depression, Health, Science, SETI, Space, tech, Writing stuff
OK, I feel miserable. Summer cold, with all the joys that brings. But I thought I would take a moment to point out this article on the new SETI Allen Telescope Array in northern California, about to come on-line.
Not that we’ll actually hear anything. It’s clear that we’ve been embargoed, cut off from the rest of the universe until we mature some as a species.
I need a nap.
Jim Downey
(Via BoingBoing.)
Filed under: Faith healing, Flu, Health, Pandemic, Psychic abilities, Science Fiction, Writing stuff
As I mention in the post below, one of the technical weaknesses of the novel is in the biology behind Ling’s genetic make-up and what happens when people come in contact with the alien artifact.
[Spoilers ahead].
This is largely due to my own lack of a solid background in biology, so I would not be in the slightest bit surprised to discover that I made some errors in the ‘explanation’ in the book about how genetic manipulation was used to reach back into the human genome’s history and pull out some traits which are no longer apparent in modern humans.
Then again, such things as residual genetic coding manifesting in oddball body structures are not really that rare, as this recent article in Discover demonstrates. From the article:
Nearly a century and a quarter after Darwin’s death, science still can’t offer a full explanation for why one outdated anatomic trait lingers in the gene pool and another goes. Modern genomics research has revealed that our DNA carries broken genes for things that seem as though they might be useful, like odor receptors for a bloodhound’s sense of smell or enzymes that once enabled us to make our own vitamin C. In a few million years, humans may very well have shed a few more odd features.
In reading this article yesterday, I was surprised not by the amount of useless genetic information remains in our genome, but just how prevalent the actual expression of such material is in humans. There are substantial variations in the human body in terms of who has what kinds of left-over ‘useless’ body parts:
PLANTARIS MUSCLE
Often mistaken for a nerve by freshman medical students, the muscle was useful to other primates for grasping with their feet. It has disappeared altogether in 9 percent of the population.
THIRTEENTH RIB
Our closest cousins, chimpanzees and gorillas, have an extra set of ribs. Most of us have 12, but 8 percent of adults have the extras.
***
PYRAMIDALIS MUSCLE
More than 20 percent of us lack this tiny, triangular pouchlike muscle that attaches to the pubic bone. It may be a relic from pouched marsupials.
A personal aside: I was born with an extra toe (complete with additional metatarsal structures) on my left foot. This was likely due to some small hiccup in my embryonic development rather than either a mutation or the expression of residual genetic material. Nonetheless, it still gets interest from any doctor, and was one of the reasons for my assumption that there is greater ‘uniformity’ between human body structures that there actually is.
So, when you read that part of the book, cut me a little slack – maybe there really is something lurking in the “junk” of our DNA which would allow for Ling’s psychic abilities…something which the artifact could ‘activate’, allowing humankind to have the ability for psychic/faith healing.
Jim Downey
Communion Of Dreams 