I’m tired. No, make that I’m weary – not just from lack of sleep, but that deep weariness of being on a long campaign of any sort, in this case three & a half years as a full time care-giver.
I wrote a couple weeks ago about our previous experience with Hospice for my mother-in-law (MIL). Well, as reflected in that post, we’d seen a downturn in her condition, notably the tendency to sleep a lot more. Couple that with increasing comments from her following naps that she had been with her parents (who have been dead for decades) and that they “wanted her to come home”, and we sensed that perhaps she was entering into the end of life. We contacted her doctor, discussed the matter with him last week. He agreed with us, prescribed Hospice once again.
This morning we had a visit from the case manager (a nice woman named Jann) from a different health organization than the one we used previously. We went over my MIL’s condition, expressed our concerns about what our experience had been last year, discussed options. According to her, my MIL fits well into the guidelines for Hospice admittance under the ‘debility’ criteria, and there’s little chance that she would ‘graduate’ from Hospice care under those criteria.
So, we’re giving this another try. My wife and I are good care-givers, and have done this job well for these past years. But now having the resources of Hospice available is a comfort, so long as I feel that I can trust it. Knowing that we have someone to call who can advise and assist as needed comes as something of a relief, and I find myself a little overwhelmed.
And for some odd reason, more weary than when I got up from being on call this morning. Tension-release, I suspect.
Jim Downey
I like to garden. Always have. Since my senior year in college, I’ve almost always had at least a small vegetable garden. This year I kept my garden intentionally small, due to the increasing time constraints of being a full-time care giver. I didn’t want to have to be dealing with 40 or 50 pounds of ripe tomatoes a day for weeks on end, like I did a couple of years ago when I planted about three dozen different tomato plants, and they all bore very heavily. This year it was only 10 plants, and as a result I’ve only canned and sauced a couple of afternoons. Surprisingly, the deer this year have decided that they too like my tomato plants, and have been ‘helping’ me by keeping them trimmed back so that less fruit grows.
Six or seven years ago, I got bit by the “chilehead” bug – I started liking hotter and hotter spices, moving up the Scoville scale from Jalapenos to Serranos to eventually commercially available Habanero peppers. Over time I started reading about hot peppers, trying sauces, eventually even growing my own peppers. For the last several years I’ve been growing Habaneros, getting seedlings from local nurseries without much choice in terms of the varietal. I’ve been making my own sauces, but also simply dry the peppers and grind them up, use the powder like most people use black pepper. That’s fairly hard core.
But this year . . . this year, I wanted to up the ante a bit. So I ordered some of these:
All photos Copyright © Cross Country Nurseries DEVIL’S TONGUE – extremely hot; Habanero Type; 2 to 3 inches long by 1 to 1.5 inches wide; matures from green to golden yellow; pendant pods; green leaves; 30 to 36 inches tall; Late Season; this pepper is outrageously hot!;C.chinense.
and some of these:
All photos Copyright © Cross Country Nurseries HABANERO-RED SAVINA ™ – extremely hot; Habanero Type; 1.5 to 2.5 inches long by 1 to 1.5 inches wide; medium thick flesh; matures from green to red; pendant pods; green leaves; 24 to 30 inches tall; Late Season; in the Guinness Book as the hottestchile known. **Cross Country Nurseries is a licensed grower of the Red Savina ™ Habanero (PVP 9200255). Transplants are provided for the home gardener. Seeds from these peppers can not be legally saved to sell to others. You must plan to use these peppers for your own use.;C.chinense.
Now, last night the damned deer munched over the Devil’s Tongue (WTF? I thought deer would stay away from hot peppers??), so I may or may not get any peppers off of those. But a couple of weeks ago I put up some additional fencing around the RedSavinas, when one of the plants showed some early signs of someone feeding on them (I’d figured some kind of groundhog or something). And this morning when I was picking tomatoes I noted a nice little orange ball in the midst of one of the plants. Investigating, I saw that this one pepper had started to ripen, but had also been sampled by a bird (birds don’t react to the capsaicin in the peppers). So I nabbed it, brought it in.
This pepper wasn’t fully matured – they become deep red as noted in the description above – and so hadn’t fully developed the heat it will have. Still, I cut it open, removed the nibbled bits and the seeds, and set it aside to dry. Then, in what is something of a normal test for me, I touched the edge of the knife with the pepper juice to the tip of my tongue. There was the briefest flash of heat, and then my tongue simply went numb. And it stayed numb for about 20 minutes, the rest of my mouth echoing that wonderful Habanero burn.
Yeah, baby, this is gonna be good!
Jim Downey
Filed under: Alzheimer's, Flu, Health, Pandemic, Plague, Science, Science Fiction, Society
Research has established one component of the world-wide epidemic of obesity: a virus.
A common virus that causes colds can be a factor in obesity, according to a study released Monday offering further evidence that a weight problem may be contagious.
The adenovirus-36 (Ad 36) has already been implicated as the cause of weight gain in animals, but with this study researchers showed for the first time that it can also cause humans to pile on the pounds.
The findings could accelerate the development of a vaccine or an antiviral medication to help fight the battle of the bulge alongside diet and exercise.
It’s a slow-moving, slow-acting plague. This would go a long ways to explaining why obesity has become so wide-spread in the last few decades, and has been hinted at in previous studies. There are other factors, certainly, but establishing a tie to a viral component could be a huge factor in dealing with this problem more effectively.
I’m overweight by about 40 pounds. Partly this is a function of my lifestyle, with the lack of opportunity to be active and the additional stress of being a full-time care provider for someone with Alzheimer’s. I know that with a lot of effort in exercise and watching what I eat, I can shake off the excess pounds – I’ve done it a couple of times. But it is so much harder now than it was before, and my natural weight-point has changed from where it used to be a decade ago to where it is now. And this pattern is seen increasingly around the globe, where other factors at play in my life or in the typical American life can be eliminated.
In Communion I have a post-pandemic society, one which is recovering from a massive disruption caused by a flu virus which caused rapid death in a large percentage of the population. But the reality of what we’re dealing with might be even more insidious.
Jim Downey
Filed under: Alzheimer's, General Musings, Health, Predictions, Religion, Society
A friend sent me a link to this CBS News item this morning:
Except that the article really isn’t about that. It’s more about where atheism fits in within our society, as seen through the vehicle of former Saturday Night Live actress Julia Sweeney, who discusses her own journey away from belief, and how it was received by her family:
Even more confusing for Sweeney personally was religion. She comes from a large Irish-Catholic family. But in her 30s, Sweeney says she began a spiritual quest. It led her away from any notion of God — a conversion she turned into a monologue, soon to be released as a film called “Letting Go of God.”
But of course, many people would disagree with Sweeney, especially her mother, Geri. She said it was a great shock that her daughter decided that there wasn’t enough evidence for her to believe in God.
“I just couldn’t believe that she had gotten to that place. I’m Catholic. I intend to continue to be Catholic,” Geri Sweeney said. “I think the Catholic Church is a wonderful place.”
It’s a long piece, but here is the bit I was intrigued by:
Julia Sweeney says she simply cannot believe in God because of a lack of evidence, but Prothero (Chair of the religious studies department at Boston University, and author of the recent book “Religious Literacy“) says that is where faith comes in.
“I have no trouble saying that, you know, we can’t prove the existence of God,” he said. “I think most Americans feel the same way.”
Julia’s mother Geri says she was taught in second grade that there was no proof that God exists.
“It doesn’t matter a bit to me,” she said. “I have a very personal relationship with my God and I don’t need any proof. I’m not searching for proof — and she is.”
* * * * * * * * * * * * *
I was still trying to get to the bottom of my first cup of coffee this morning, when my MIL called for the third time since I had come downstairs about thirty minutes previously.
I entered the dark bedroom (it was barely 7 AM), went over to her bed. I leaned over the railing. “What do you need, MIL?”
“Are we there yet?”
“Where?”
“Boonville.” (A nearby town, and where she grew up.)
“We’re in Columbia.”
“Oh.” Pause. “Well, how long will the train take to get to Boonville?”
“Train?”
“Yeah, we’re on a train.”
“Um, no. We’re in your home.” (The home where she’s lived for 53 years.)
“Oh, no, we’re on a train.” She looked around the ample bedroom, complete with bookshelves, a desk, dressers, et cetera. “This is a train.”
“Um, no, this is your bedroom. In your home. In Columbia.”
“Are you sure?”
“Yup.”
“How are you sure?”
* * * * * * * * * * * * *
I am somewhat dismayed when I see the religious responses to this kind of criticism/concern. Because so often it is not a rational “I know there’s no proof of God, but my faith helps me believe”, and instead is something akin to the outright disconnect I get when dealing with my MIL. It’s “Through the Looking Glass” time, where the usual words and understanding that we have of the world around us is no longer in any way related to reality.
Now, many people of deep faith are really decent people, with a good education and the ability to discuss things intelligently. And yet, when pushed, we so often see a believer who is capable of constructing a reality in which his personal saviour is triumphant over the “also rans” of science and other religions.
And that frightens me.
Oh, not so much that mankind is still stuck in magical thinking. I knew that. Have known it for many, many years. But rather that even the intelligent and well educated are capable of warping knowledge to fit their own particular religious perspective.
I will admit to being an elitist. I look at intelligence and education as our only possible hope of progress as a species. I see it as an antidote to ignorance, superstition, living in a fantasy where it is OK for one religious group to hate and kill another.
But when I witness the willing suspension of critical thinking – worse, the twisting of critical thinking to support irrationality – I feel like I am looking into a future in which the whole human race slides into an Alzheimer’s-like dementia, unable to determine where we are, let alone where we’re going.
* * * * * * * * * * * * *
After my MIL got up from her nap this afternoon, had a snack, and went in to sit in the front room, we had a storm roll through. Nothing serious, but there was a bit of lightning and thunder. I went to check on her, and it was clear that she was anxious about something. I asked her if she was worried.
“I’m worried about the people.”
“Which people?”
“The people who I was talking with. Before.”
“Maybe that was a dream, MIL. You’ve been here all day.”
“Oh, no, I was up on a hill. Talking with people. They told me to come back here.”
(We live on the highest hill around, and she’d been no where.) “Well, maybe that was in your dream.”
“No, it was at a house, up on a hill over there,” She gestured randomly. “Will you take me up there? I want to make sure the people are OK.”
“I’m sure they’re fine.”
“But you have to take me to go see.”
And thereafter followed 40 minutes of discussion about not needing to take her ‘over there’ in the car so she could check to make sure the people of her dream were OK.
* * * * * * * * * * * * *
And therein lies the danger of this – those who have slipped off into dementia are demanding that we all go along for the ride, and that we take them to their imaginary places to see imaginary people and do imaginary things. Why? Because they’re “sure”.
Jim Downey
(A slightly different version of this pertaining to specific people was posted at UTI. I decided that the general idea was applicable elsewhere, so decided to post it here.)
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
We’ve recently had to make a change in strategy for dealing with my mother-in-law’s confusion (related to her Alzheimer’s). Heretofore we’ve tried to keep her “grounded” in reality, through a series of questions about recognizing family member’s pictures, asking if she knew where she was, and so forth. Generally, after a couple of minutes of this, she’d be pretty well settled about where we were, who was who, and so forth. It helped to keep her anchored in the real world.
But then last week I noticed that she was starting to become more anxious as a result of these questions. When she couldn’t come up with a name, or wasn’t sure whether we were in her parents home or someplace else, it just made her embarassed and worried. She’d resort to trying to construct a reality that made sense of her mixed memories, and get hostile if you tried to challenge that reality.
The last thing we want is to have her upset. Not only does this make things more stressful and difficult in caring for her, but it sort of defeats the whole purpose of our caring for her here at home (her home of 53 years). Clearly, we had to change our strategy.
Now we don’t try and ‘lead’ her to any particular view of the world, and rather concentrate on letting her know that she is loved and safe where she is (wherever she thinks that is). We’ll answer her questions honestly, if she wants to know who is who in a photo, but we don’t press her to come up with answers herself, or try and correct her if she volunteers an opinion. I mean, if she’s wrong, so what? Nothing really hinges on whether she gets someone’s name right, or if she thinks that we’re in some other place.
But this is surprisingly difficult, if you don’t make a conscious effort to allow her to be in her own little world. The tendency we all have is to try and coordinate on what reality is – to have a shared view of what the world is like. When confronted with someone who disagrees on something as fundamental as your location, it is easy to get your back up. You’ve probably experienced this with a friend or spouse when traveling, both of you looking at a map and drawing different conclusions about where you are – such disagreements become heated very easily, and can take on an importance beyond just a simple determination of location.
And I think that this is at the root of many of the disagreements which exist between believers and non-believers. In some very basic way I see the world differently than someone who is a believer. I look at the evidence around us, and say “there is no indication that there is anything other than natural process at work”. Someone else looks at the same material and sees plenty of evidence of design. I think that he’s wrong, and being somewhat stubborn in consideration of the evidence. And he most likely feels exactly the same way about me.
Now, the difference between this situation and the one with my MIL is that if she is off in her own little fanasy land, it makes little or no matter. Whereas the kind of world-view that exists on the part of believers vs. atheists can matter a lot, in any number of ways here in the real world. How to proceed in regards to, say, the environment, depends on whether or not you expect the world to be around for a while or if the Second Coming is just around the corner. I address this issue at some length in Communion, because it deals with a changing paradigm forced by the discovery of an alien artifact. But I am still always surprised when it plays out so clearly in discussions I have over at UTI and elsewhere. Which reality you subscribe to really does make all the difference in the world.
Jim Downey
Communion Of Dreams 