FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!

PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Showing posts with label Newspaper. Show all posts
Showing posts with label Newspaper. Show all posts

Sunday, July 27, 2014

Anne Lamott

Do you know Anne Lamott? Religious writer with a wonderfully sarcastic, sacrilegious, realistic view on life and religion. I like her. I am sharing this today because it kind of sums up how I am feeling. https://www.facebook.com/AnneLamott


Many mornings I check out the news as soon as I wake up, because if it turns out that the world is coming to an end that day, I am going to eat the frosting off an entire carrot cake; just for a start. Then I will move onto vats of clam dip, pots of crime brûlée, nachos, M & M's etc. Then I will max out both my credit cards.

I used to think that if the world--or I--were coming to an end, I'd start smoking again, and maybe have a cool refreshing pitcher of lime Rickeys. But that's going too far, because if the world or I was saved at the last minute, I'd be back in the old familiar nightmare. In 1986, grace swooped down like a mighty mud hen, and fished me out of that canal. I got the big prize. I can't risk losing it.

But creme brûlée, nachos, maybe the random Buche Noel? Now you're talking.
The last two weeks have been about as grim and hopeless as any of us can remember, and yet, I have not gotten out the lobster bib and fork. The drunken Russian separatists in Ukraine with their refrigerated train cars? I mean, come on. Vonnegut could not have thought this up. Dead children children on beaches, and markets, at play, in the holy land?? Stop.
The two hour execution in festive Arizona? Dear God.

And let's not bog down on the stuff that was already true, before Ukraine, Gaza, Arizona, like the heartbreaking scenes of young refugees at our border, the locals with their pitchforks. The people in ruins in our own families. Or the tiny problem that we have essentially destroyed the earth--I know, pick pick pick.

Hasn't your mind just been blown lately, even if you try not to watch the news? Does it surprise you that a pretty girl's mind turns to thoughts of entire carrot cakes, and credit cards?
My friend said recently, "It's all just too Lifey. No wonder we all love TV." Her 16 year old kid has a brain tumor. "Hey, that's just great, God. Thanks a lot. This really works for me."
My brother's brand new wife has tumors of the everything. "Fabulous, God. Loving your will, Dude.”

My dog Lily's ear drum burst recently, for no apparent reason, with blood splatter on the walls on the entire house--on my sleeping grandson's pillow. Do you think I am well enough for that?
Let me go ahead and answer. I'm not. It was CSI around here; me with my bad nerves. And it burst again last night.
Crazy!

Did someone here get the latest updated owner's manual? Were they handed out two weeks ago when I was getting root canal, and was kind of self-obsessed and out of it? The day before my dog's ear drum first burst? If so, is there is an index, and if so, could you look up Totally Fucking Overwhelm?

I have long since weeded out people who might respond to my condition by saying cheerfully, "God's got a perfect plan." Really? Thank you! How fun.

There is no one left in my circle who would dare say, brightly, "Let Go and Let God," because they know I would come after them with a fork.

It's not that I don't trust God or grace or good orderly direction anymore. I do, more than ever. I trust in divine intelligence, in love energy, more than ever, no matter what things look like, or how long they take. It's just that right now cute little platitudes are not helpful.

I'm not depressed. I'm overwhelmed by It All. I don't think I'm a drag. I kind of know what to do. I know that if I want to have loving feelings, I need to do loving things. It begins by putting your own oxygen mask on first: I try to keep the patient comfortable. I do the next right thing: left foot, right foot, left foot, breathe. I think Jesus had a handle on times like these: get thirsty people water. Feed the hungry. Try not to kill anyone today. Pick up some litter in your neighborhood. Lie with your old dog under the bed and tell her what a good job she is doing with the ruptured ear drum.

I try to quiet the drunken Russian separatists of my own mind, with their good ideas. I pray. I meditate. I rest, as a spiritual act. I spring for organic cherries. I return phone calls.
I remember the poor. I remember an image of Koko the sign-language gorilla, with the caption, "Law of the American Jungle: remain calm. Share your bananas." I remember Hushpuppy at the end of Beasts of the Southern Wild, just trying to take some food home to her daddy Wink, finally turning to face the hideous beast on the bridge, facing it down and saying, "I take care care of my own.”

I take care of my own. You are my own, and I am yours--I think this is what God is saying, or trying to, over the din. We are each other's. Thee are many forms of thirst, many kinds of water.


Friday, February 22, 2013

As Alzheimer's rate soars, concern rises over costs


Janice Lloyd, USA TODAY6:33p.m. EST February 14, 2013

New reports that the number of Alzheimer's cases in the USA will likely triple to 13.8 million by 2050 are raising concerns about the nation's ability to afford care.
Care for patients with Alzheimer's and other forms of dementia will increase 500% by 2050, reaching $1.1 trillion, according to the Alzheimer's Association. This is in 2012 dollars. About 70% of costs for Alzheimer's care are billed to Medicare and Medicaid.​​
Patients with Alzheimer's and other forms of dementia will spend three times more on health care than patients with other types of illnesses, the association says. Medicare patients with Alzheimer's and other dementias spent $43,847 on health care and long-term care services, compared to $13,879 spent by patients without those illnesses, the association said in a 2012 report.
For government health care programs already facing economic strain, these estimates are daunting, researchers and advocates say.
"If you think you're going to solve our fiscal entitlement process without addressing one of the underlying causes (Alzheimer's costs) you're not getting to the heart of the problem,'' says Robert Egge, vice president of public affairs for the Alzheimer's Association.
Alzheimer's is an incurable, degenerative brain-wasting disease that robs a person of memory, eventually erasing personality and making even routine tasks such as dressing and bathing impossible. They also spend more time hospitalized than people without these illnesses.
"The bottom line is when you have a chronic condition and you add dementia, you have higher costs,'' says Julie Bynum, a physician and associate director of the Center for Health Policy at Dartmouth in Hanover, N.H., who gathered data for the Alzheimer's Association report.
"They can't self-manage their medications or monitor their diets and watch out for things like how much salt or sugar they're eating. If they also have diabetes or hypertension, two other conditions common in the older population, they need others to take care of them," she says.
A federally-funded report published last week in the medical journalNeurology said the number of people with Alzheimer's is expected to rise from 5 million to 13.8 million by 2050.
Many costs associated with Alzheimer's care are not reimbursed. Out-of-pocket costs for a family with a loved one who has dementia were $8,216 compared to $2,500 for patients with other types of conditions, according to a report last week in the journalAlzheimer's & Dementia.
Amy Steele, 34, of Oklahoma City had to quit her job and cash in her 401(k) in 2010 to help care for her mother, who is 60 and has early Alzheimer's. She recently moved her mother, who is divorced, from Dallas to an assisted-living facility near Oklahoma City. She also has been helping younger siblings with college expenses since her mother is no longer able to do so.
"I'm not going to be able to start saving again for a while,'' Steele says. "When my mother requires a higher level of care, I'll need to help supplement that and also help with her medical expenses. It's been really hard."
The research dollars for Alzheimer's are in their "infancy,'' says Jennifer Weuve, an assistant professor of medicine at Rush Institute for Healthy Living in Chicago.
The government last year set a goal of developing preventive treatment for Alzheimer's by 2025 and increased research funding through the National Institutes of Health to $606 million last year, exceeding $500 million for the first time. But it still lags behind funding for other diseases: $6 billion is spent on cancer research, $3 billion on research for HIV/AIDS.
"From polio to cancer and from heart disease to HIV/AIDS, we see that a commitment to research investment and targeted innovation on high-cost diseases is a proven deficit reduction strategy,'' says George Vradenburg, chairman of USAgainstAlzheimers, an advocacy group.
President Obama in his State of the Union Address on Tuesday highlighted the importance of Alzheimer's research, and asked Congress not to cut funding. "Our scientists are mapping the human brain to unlock the answers to Alzheimer's," he said.
Several trials are getting underway that would use drugs to prevent the disease from occurring in people who are genetically predisposed to early-onset Alzheimer's. One high-profile name with the condition is University of Tennessee Hall of Fame basketball coach Pat Summitt, who stepped down from her job after disclosing her diagnosis in 2011.

Wednesday, May 9, 2012

A New Technology

Slowly Gregory has been loosing his ability to use the computer. Too confusing. Too many  if ... then's to solve. Too many sequential and/or random ways to work through an activity. Over time, since he has been loosing language, he hasn't been sending or receiving many e-mails, I am the hub for our incoming and outgoing information. But he had been able to hold on to a few skills.

When the iPad first came out I thought, "Aha!" Maybe this is the answer. At that time G was just beginning to have difficulties navigating around his Mac. I figured it would be easier with gestures, touch what you want to see, swipe to get rid of something. So we went to the Apple Store to give it a test run. It failed.

Gregory was not able to make associations on figuring out what he wanted to do based on what he saw. Too many one, two, three, and four finger clicks, swipes, wipes. At one point a key board came on the screen and he did not know what to do with it even though he had still been using the keyboard on his Mac. If he touched something in error he could not tell where the iPad sent him or how to get back to where he came from.

The final computer skill to go has been his reading the New York Times every day. He would get an e-mail and be able to go back and forth between the e-mail program and the browser program depending on what he wanted to read and then going back to select the next article.

Today I had a great insight that is so great that it only could have come from our "Sprit Guides." A new technology. At least for Gregory. We are going to try home delivery of the New York Times in paper edition. We may be using up a few more trees and we may be adding to the recycling heap, but perhaps Gregory will once again be able to thumb, literally, through the stories and enjoy his daily dose of news and current events. I'll let you know.