This is the kind of day for skiing or snowshoeing or snow-fort building. But I don’t do any of them. I can’t seem to even walk very far these days.
But today, with the sky a clear blue and a sun that has finally left the falling snow behind, I bundle up and get myself outside for the first time in weeks. I take a short walk around a few blocks — just about as much as my joints can take today.
When I come back to the house, I haul out a stool and sit on the small porch. I close my eyes. For a moment I am back in my babyhood carriage — the old kind from the 40s, with an oil cloth cover that rolls up to my chin, so that I am warm and snuggly inside, even though my nose is cold. The sun is warm and bright on my closed eyelids. I want to be a child again.
I think of my mother — how young and happy she was when she pushed me in that carriage — how disappointment and dementia drained from her spirit what was the best of her. I think of her because her 95th birthday would have been this month; she would have made it had she lived for three more months. But it’s just as well that she didn’t; those months would have only extended her hell on earth.
I could sit here all day, pretending. But I have a math challenge to confront — figuring out how to use a sweater pattern I like but using a different weight yarn and different size needles. It’s all algebra, but math-challenged that I am, I have to work myself up to grappling with setting up the equations. I can’t seem to keep my body in shape, but I try to do so with my brain.
I do have to deal with my body, though, despite the back problems. I’m hoping I can try the “chair yoga” this week at the senior center in town — that is if it’s not canceled again because of a another snow storm. And I’ve begun firing up my wii around 4 p.m. every day just to do some balance and aerobic exercises, which I seem to sorely need.
We are all waiting for spring. But for today, I’ll take the sun on snow.
Dentist today, haircut tomorrow, doctor on Thursday. I wonder if, like a car, it gets to the point at which it’s just not cost effective to keep fixing it up.
When my grandson came to say goodnight to me yesterday, I noticed that his right ear was a flaming red.
“You have one red ear,” I told him, looking at my daughter to see if she knew.
“Yup. He gets it every once in a while,” she tells me. “Lots of people do. You can Google it. It won’t last long.”
And so I do a search, and find “red ear syndrome.” No one knows exactly why it happens, but apparently it happens to all kinds of people. And if it weren’t for the internet, we would have never known that it was as common as it is. One mystery solved.
It’s kind of like my seeing 11:11 periodically over the years. I blogged about it several times. It’s a number that lots of people keep seeing (Google it and find out).
But that’s not the weirdest thing. The weirdest thing is that if you add up the numbers for the day and time my mom died, you get 11 (for the date) 11 (for the time).
If you add up the numbers for the date she went into the hospital, you get 11.
Like the red ear syndrome, we don’t know why it happens, but it happens.
Pain. We all feel pain. We all would rather not feel pain, and those in pain usually can let you know where it hurts and how badly it hurts.
Except if they have dementia.
There is a false assumption that those with dementia don’t feel pain because they often can’t articulate that fact in ways that are obvious — especially with words.
From “Pain and Dementia,” referenced above:
Over time your family member may lose the ability to speak or may not make sense when they do. Therefore, it is very important to be able to recognize behaviours or actions that indicate pain. Some of these pain-related behaviours include the following:
* frowning, grimacing, crying
* swearing, moaning, calling out, noisy breathing
* fidgeting, pacing, rigid posture
* guarding an area of their body, not wanting to move
* hitting or striking out
* withdrawing or resisting when someone is helping with personal care
* refusing food
* change in appetite, rest periods, or sleep patterns
* increased confusion, crankiness, or distress
* Sudden changes in behaviour are important to recognize as these are often the only clue that an older person is sick, getting worse in their dementia, becoming depressed, or having a side effect from a new medication.
* Attention to your family member’s behavioural and psychological symptoms are key to improving and maintaining their quality of life.
A recent PBS Frontline program, “Facing Death,” documented the pain suffered by both family (emotional pain) and those dying from dementia and other illnesses (both emotional and physical pain.) You can watch the program at the above link. Also of great insight are the comments left by viewers.
…fewer than one in five people can have a peaceful end, since ‘dying is a messy business’ for which relatives are unprepared. He continues: ‘Too often, patients and their families cherish expectations that cannot be met, with the result that death is made all the more difficult by frustration and disappointment with a medical community that may be able to do no better.’
Relatives who expect aware deaths may become angry and turn their anger onto doctors and nurses when death takes other forms. Dying people often need psychosocial support, but the potential for introducing this occurs only when the dying phase is identified. This is not always possible in trajectories 2 and 3….. [2) long-term disability with periodic exacerbations and unpredictable timing of death that characterize dying with chronic organ or system failures (some cancers that respond to treatment and then relapse come into this category); (3) self-care deficits and a slowly dwindling course to death from dementia.]
After watching the Frontline program and hearing how the doctors explain the options to the families of dying patients, it seems to me that there needs to be more honesty from the medical profession about the dying process, its inevitability, and the benefits to the dying of making those patients as pain-free as possible.
Maybe, because I grew up above a funeral parlor operated by my father, a funeral director – maybe, because I sat at my father’s bedside while it took days for him to die of cancer (his mind was alert and he chose to die at home with a certain amount of pain) – maybe because I survived the excruciating pain of a breech birth and thought I had died and now I’m not afraid to die – I feel strongly that, when death is close at hand, it should be welcomed as a relief from pain and that pain (for example, of old organs failing, of agitated dementia) should be aided by pain-relief medication.
On my bookshelf is “Final Exit,” which I bought a long time ago out of curiosity about peaceful “self-deliverance” when my time comes, especially if that time comes riddled with pain.
But it becomes a lot more complicated if a form of dementia has stolen my ability to communicate my pain and my wishes. My daughter knows that I’d rather die in peace than die in pain.
In the story of the Garden of Olives, even Jesus pleaded for the chalice of pain to be taken from him. No one wants pain, although we often are willing to bear with a certain amount of it if it’s going to get better. But the pain of dying does not get better.
Somehow we need to be educated about that fact so that we hold the best pain-free interests of our dying relatives in mind.
Atheist though I am, I still marvel at the awesomeness of synchronicities.
All afternoon today, as I cried and blogged and cursed, and my brother argued, and my mother lay still and panting in her hospital bed, the fat gull flew and strutted around the roof outside my mother’s window, screeching, The sound was like fingernails on a blackboard. There was no ignoring it.
So, I googled “seagull totem” and found this, which I share here:
Spiritual Messengers
Sea Gulls are messengers from the gods, especially ancient Celtic deities.
They bridge the gap between the living world and the spirit world.
Opening yourself to their energy enables you to communicate with the other side.
Sea Gull can also give you the ability to soar above your problems
and see things from above. Seeing all the different viewpoints.
Better than any fortune cookie.
And then, went I went outside to get another book from my car, I found the item in the photo below in my book bag, and I hung it on the rack on my mother’s bed that is supposed to hold IV bags.
It’s the talking stick that I and my five women friends jointly and ritually made from a root, stones, feathers, ribbon, yarn, thread, spangles, and even a golf tee. Crone magic of a very special kind.
My daughter chants to set my mother’s spirit free. And I embrace roots and wings for my own spiritual sustenance.
My mother’s room looks out over a roof with the HVAC and other protuberances. But over the left corner of it all, I can see the Hudson River and the Palisades. I can see it, but my 94 year-old mother can’t.
Day by day, she grows smaller in the hospital bed on the oncology floor with the patients who are at the point at which “Comfort Care” is their last best option. My mother doesn’t have cancer, but, with advanced dementia (can’t swallow) and renal failure, “Comfort Care” is her last option as well, and this is the best place for her in this hospital. (At least I think so; my brother doesn’t agree.)
I have blogged about my mother’s condition before, and you can read those posts by searching this blog for “dementia” and/or “caregiving.”
For the past ten years (which, not coincidentally, is when I began this blog) my brother and I have disagreed about the effects on my mother of her journey into dementia. What he insisted was her usual stubbornness and feistiness, I believed, from my own research, was that insidious deterioration that had begun in her brain and would end just where it is ending. I had read The 36-Hour Day, I logged onto online forums on the subject of symptoms and care. I subscribed to Care ADvantage magazine to get tips on what to look for and how to help her manage the changes I could see in her behavior and her perceptions of what was going on around her.
My brother and I brought our mother to the emergency room last Sunday, after she had refused to eat or drink for several days, was obviously dehydrated, and had begun to tune out the world. In retrospect, perhaps we should have let nature take its course, and she might have simply gone to sleep at some point and never woke up. But she seemed in severe distress — couldn’t find a comfortable position to lie or sit in, and finally, unsuccessfully, tried to sleep sitting up. She had stopped communicating and kept rubbing her legs. We couldn’t tell if she were suffering, and so we took her to the hospital,
She is sedated, now, as “comfortable” as possible during this time when her body is shutting down. Her awareness already has, except for brief and seldom moments when she is physically disturbed and then responds with wide-open, red-rimmed eyes and an unearthly howl that resonates with a primal fear.
I have slept in her hospital room every night since she was admitted last Monday, listening to her labored breaths and getting up to check her when her breathing stops for several seconds at a time. When my brother comes to stay with her during the day, I take some time and slip away to shower, change my clothes, eat something other than hospital cafeteria food, walk in the crisp fall sunshine. The time drags while I am sitting in that room with a partial view, and so I knit, read, play games on my iphone, check in with FaceBook and my son’s Twitter, check my email.
What was going on? Had decades of sucking down so much high-fructose corn syrup not only made Americans incredibly obese, but also messed with white brain chemistry to the point that some sort of tipping point had occurred?
The Kochs are longtime libertarians who believe in drastically lower personal and corporate taxes, minimal social services for the needy, and much less oversight of industry—especially environmental regulation. These views dovetail with the brothers’ corporate interests. In a study released this spring, the University of Massachusetts at Amherst’s Political Economy Research Institute named Koch Industries one of the top ten air polluters in the United States. And Greenpeace issued a report identifying the company as a “kingpin of climate science denial.” The report showed that, from 2005 to 2008, the Kochs vastly outdid ExxonMobil in giving money to organizations fighting legislation related to climate change, underwriting a huge network of foundations, think tanks, and political front groups. Indeed, the brothers have funded opposition campaigns against so many Obama Administration policies—from health-care reform to the economic-stimulus program—that, in political circles, their ideological network is known as the Kochtopus.
Like the robber barons of old, David H. Koch is a billionaire and very generous philanthropist, as though doing some good with some of his money makes up for all the bad he does with the rest of it — including the founding and support of supposed “grass roots movements” such as Americans for Prosperity Foundation. Charles Lewis, the founder of the Center for Public Integrity, a nonpartisan watchdog group, said, “The Kochs are on a whole different level….. They have a pattern of lawbreaking, political manipulation, and obfuscation. I’ve been in Washington since Watergate, and I’ve never seen anything like it. They are the Standard Oil of our times.”
The revolutionaries who held the original Boston Tea Party would never have stood for the machinations of the Kochtopus. These new Tea Partiers, manipulated by libertarians like Koch who spread disinformation and and stir up the disatisfactions of the people who will most suffer if their policies come about, are going to dismantle what is most good about this country. What these misguided citizens don’t realize is that they will ultimately suffer most, as the Kochs of this nation grind their lives to ash.
QUOTE OF THE DAY:
“I’m wondering if those who support that so-called Tea Party Movement really know where Republicans are leading them? It seems like the Tea Party rank & file are being USED by a bunch of vain, self-serving, evil, power mad, greed stricken, K-Street Con Artists. Paid for by wealthy silver spoon trust fund babies who want to turn the American PEOPLE into peasants. The scum of the earth who hide their hideous faces by using Michele Bachmann and Sarah Palin as spokespersons. SUCKERS!
Just look at their agenda items. It‘s like wet dream for Ken Lay or Jack Abramoff:
1) Repeal Health Insurance Reform
2) Privatize Social Security or abolish it.
3) End Medicare
4) Extend Bush Tax Cuts for wealthy and Big Oil
5) Repeal Wall Street reform
6) Protect all those responsible for Gulf oil disaster and future environmental catastrophes
7) Abolish or cut funding to Department of Education
..) Abolish Dept. of Energy
9) Abolish Environmental Protection Agency
10) Repeal 17th Amendment
11) Rewrite Bible and school textbooks,
12) Replace JESUS with Glenn Beck, Frank Church with Joe McCarthy…
13) After USA is destroyed by Republican Party low grade thought processes, BLAME Democrats/Liberals
14) be flunkies, soldiers and slaves for silver spoon trust fund babies like George W. Bush, Saudi Prince Bandar and the Koch Bros.
Why aren’t the mainstream media falling all over themselves to unveil the Koch behind the curtain. Sell-outs. All of them.
This is a guest post by Barbara O’ Brien, who regularly posts at The Mahablog, Crooks and Liars, AlterNet, and elsewhere on the progressive political and health blogophere, and who has earned the notoriety of being a panelist at the Yearly Kos Convention and a featured guest blogger at the Take Back America Conference in Washington, DC.
Please feel free to re-post Barbara’s piece and let me know if you do by commenting here.
HEALTH CARE REFORM WILL HELP EVERYBODY
Many Americans assume the new health care reform act will benefit mostly the poor and uninsured and hurt everyone else, according to polls. As Matt Yglesias wrote, “Basically, people see this as a bill that will take resources from people who have health insurance and give it to people who don’t have health insurance.” Those who still oppose the reform say that people ought to pay for their own health care.
We all believe in the virtues of hard work and self-reliance, but these days it’s a fantasy to think that anyone but the mega-wealthy will not, sooner or later, depend on help from others to pay medical bills. And that’s true no matter how hard you work, how much you love America, or how diligently you take care of yourself. The cost of medical care has so skyrocketed that breaking an arm or leg could cost as much as a new car. And if you get cancer or heart disease — which can happen even to people who live healthy lifestyles — forget about it. The disease will not only clean you out; it will leave a whopping debt for your survivors to pay.
And the truth is, we all pay for other peoples’ health care whether we know it or not. When people can’t pay their medical bills, the cost of their health care gets added to everyone else’s bills and insurance premiums. When poor people use emergency rooms as a doctor of last resort, their care is not “free.” You pay for it.
Another common fantasy about medical care is that the “free market” provides incentives for medical companies to develop innovative new drugs and treatments for disease without government subsidy. It’s true that private enterprise is very good at developing profitable health care products. But not all medical care can be made profitable.
For years, the U.S. government has been funding medical research that the big private companies don’t want to do because there is too much cost for the potential profit. This is especially true for diseases that are rare and expensive to treat. An example of a recent advance made possible by government grants include new guidelines for malignant pleural mesothelioma treatment developed by Sloan-Kettering mesothelioma cancer researchers. Another is a blood screening test developed by mesothelioma doctors like thoracic surgeon Dr. David Sugarbaker. The health reform act provides for more dollars for such research, from which even many of the tea party protesters will benefit.
The biggest fantasy of all was that people who had insurance didn’t have to worry about health care costs. But the fact is that in recent years millions of Americans have been bankrupted by medical costs, and three-quarters of the medically bankrupt had health insurance. And yes, insurance companies even dumped hard-working, law-abiding patriots. But the health care reform act will put an end to that, and now America’s hard-working, law-abiding patriots are more financially secure, whether they like it or not.
