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Nearly anyone over the age of 50 has experienced some frustrating moments of memory lapse that younger society calls “gapping out,” and older society calls “senior moments.” These memory lapses, or slowed recall, can send some people into a panic, particularly if they have a relative with Alzheimer’s disease. read more..
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This morning I was thinking about two different friends of mine, both facing losing their moms to cancer. At least they get this holiday season with their moms, and they know it's the last one, is the direction my thoughts went, and I started composing some sort of holiday blog post in the back of my mind.
And when I got home from driving and musing, and logged onto Facebook, I saw to my dismay that one friend's mom had succumbed to her cancer only 2 weeks after her diagnosis. Last year was their last holiday together and they didn't know it. Her mom was healthy and fine in mid-November (or thought she was).
You don't know when it will be the last time. The last time you see someone, talk to them, celebrate a holiday, hoist a pint, laugh or cry or cringe at a movie together. It is worse when a healthy person gets taken in an accident of course, as there is no warning, but as my friend just found out to her sorrow, a mom can be fine on Thanksgiving and dead of cancer by Christmas.
When my dad got diagnosed, the doctors estimated, based on his age and how far his Alzheimer's had progressed, that he would live approximately 11 years. How GOOD those years might have been, they didn't say. Just that he should have made it to about 75 years old. So at that last Christmas, the one we didn't know was the last, in 2006, we thought we had 8 or 9 more years, when in truth it was less than a year.
Ironically, every year my mom thinks it's her mother's last Christmas (she's 93 now) and every year Grandma keeps going like the Energizer bunny. We're almost numb to thinking about her not being here anymore, to the point that when it does happen, we're going to be in total shock.
I guess we all know somewhere deep inside that anyone and anything can be taken from us without warning. And maybe we should live like that, never going away mad or holding a grudge. Always kissing our loved ones goodbye and telling them they are loved. But we don't. We get angry. We slam doors. We leave without saying goodbye. Everyone would like to think they are immortal and so are all their loved ones.
I believe that as long as someone remembers us, our memory is immortal, and our souls hang out in the Elsewhere Bar and do whatever needs to be done in the next life. But Alzheimer's and other forms of dementia can steal away even that breath of life, taking those memories forever.
I can't offer a solution. I'm not a god or a doctor, just a person who has lost so much, who grieves to see her friends in similar sorrow.
Love who you have while you have them, and remember them fondly every day after that."Had a Dad" Alzheimer's Blog http://alzheimersdad.blogspot.com(c) Gevera Bert Piedmont })i({Thank you for visiting! read more..
It appears at the moment that Dotty has some new awareness and is more engaged. Yes, like always I am amazed, and greatly heartened.
By Bob DeMarco
Alzheimer's Reading Room
Bob DeMarcoI had a long conversation with Carole Larkin yesterday about how Dotty has recently "perked up". She is more alive and more aware.
As this happens, I always ask myself, what changed, what variables are causing the difference? What am I learning, or relearning, that could help or benefit other dementia caregivers?
I think a key word is relearning. It is amazing how I have to relearn something I already learned over and over as an Alzheimer's caregiver for my mother.
AD caregiving is difficult. There is always so much going on. One of the things that make it difficult is that the variables are always changing, the person living with dementia is always changing. As persons living with Alzheimer's change, so do the tasks you perform each day change.
In a way, at least for me, this sometimes makes it difficult to stick to the routine, to stick with the program. To do the things that are necessary to help keep the dementia patient attached to the world, and aware.
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One reason that I get distracted from our routine is that I have to deal with the reality that Dotty's condition continues to worsen. This is not unexpected, but nevertheless dealing with the "expected" as it happens is taxing emotionally and psychologically. So I think this explains in part why I sometimes get distracted and fall out of our routine. It takes a lot of energy to deal with the progression of Alzheimer's disease.
Recently, I have been distracted because Dotty can barely walk. We are now using the wheelchair every time we go out the door.
Dotty can no longer walk the 60 or so feet to go see Jim and Ruth. I must tell you this does make me a bit sad. That drains energy. Dotty can no longer "mosey" on down to see Jim and Ruth. This means she can't go get her own social interaction. This means I have to take her down, or find a way to fill in the void. Again, emotionally, psychologically and energy draining.
It took me a while to figure out what we were going to do adjust to these new circumstances. As a result, while I was making a plan, we fell out of our routine a bit.
A few weeks ago, I finally gathered up the energy and focus to start pushing Dotty around in the wheelchair. The purpose is simple, get her out into the sunlight for a big injection of Vitamin D. Yes, I think the level of vitamin D is important. You absorb vitamin d from the sun. So, if Dotty is not getting enough vitamin d she gets dull, bored, and less communicative.
Recently, we have been getting some very large doses of sunlight. This happens on our wheelchair walks, and on our renewed trips to the pool.
I have to assume that sunlight is one factor that is making Dotty more aware and more communicative.
Let me throw this out while we are here. The sun is out folks even if its cloudy or dingy out. Keep that in mind.
During the last trip to pool Dotty started saying some things and making some observations she had not made in a long time. I wondered about this. The only thing I can conclude is that the trips to the pool are "throwing Dotty back in time". In other words, she talks and acts a bit like she did in the long ago "days". I see this as a big positive. Why? Well, at least Dotty is initiating some talk and make some observations. This seems to carry over at home.
For the last two days, Dotty has started to say over and over, "I'm hungry, I'm starving". I had not been hearing this for a long time. So yes, it catches my attention. Why? The sunlight? The pool? The rides in the wheelchair? Me? Or, all of them in combination?
I think it is all of them in combination plus I am paying more attention to Dotty.
Another thing read more..
Title: Brain Scans Suggest How Alzheimer's Spreads
Category: Health News
Created: 3/21/2012 2:06:00 PM
Last Editorial Review: 3/22/2012 12:00:00 AM read more..
Does anybody still write the old fashioned way with pen and paper in this digital age of computers? My preferred method of writing is still furiously scribbling in notebooks, crossing out phrases and revising in the margins with puzzling asterisks … Continue reading ? read more..
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From an Alzheimer’s and dementia perspective, I’m puzzled by the announcement of a senior day-time care service closing in my area due to declining enrollment. With all the statistics pointing towards an Alzheimer’s epidemic as baby boomers age, why is … Continue reading ? read more..
Middle aged women who have become caregivers report many health issues because they feel that their lives are spinning out of control. Depression and weight loss, or weight gain, are common symptoms reported. Could the recurrence of a previous eating disorder, or the development of a new one, be far behind? read more..
Many of us feel alone when we are trying to care for our aging parents and there are no siblings to help, or if siblings won't help with caregiving. When we have one parent who has dementia, it is hard. When we have two, it is often nearly unbearable. read more..
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Amen, the Draft Framework for the National Plan to Address Alzheimer’s Disease was released today, the long awaited results of the National Alzheimer’s Project Act passed a year ago! It appears to be a step in the right direction, and in … Continue reading ? read more..
If we’re alive, we are coping with a significant amount of stress. Yet stress hormones have been shown to have a negative effect on our health. Now, the recent article, "Stress may increase risk for Alzheimer’s disease: Stress hormones lead to Alzheimer-like protein modifications read more..
Contributed by Dr. Robert Stern, BU ADC Clinical Core Director and Professor of Neurology and Neurosurgery at BU School of Medicine. This blog entry was modified from an article in... read more..
In January, I mentioned the National Alzheimer's Plan draft and invited you to send comments to the US Department of Health and Human Services. Several of you did that, and they've now posted those comments and several others to their website at http://aspe.hhs.gov/daltcp/napa/Comments/PubCom.shtml. ...Read Full Post read more..
I work for a great company that has a “Casual Friday” policy. Every Friday for a minimum $5 donation, employees may wear jeans, shorts, t-shirts, or whatever casual attire deemed appropriate for work. The money collected each Friday is then … Continue reading ? read more..
Here is a cost of Alzheimer's I've never heard discussed: loss of Social Security income.
I'm going to completely make up figures here.
My dad retired, literally, the earliest he could, meaning he got the minimum SS income. Let's say he got $1000 a month, but if he had stayed until he was 65, he would have gotten $2000 a month. And assume he lived a normal lifespan to 80 years. So from age 65 to 80 (15 years) he made $24,000 a year ($360,000). Then when he died at age 80, my mom would then get that money for the rest of her life--she's from a long-lived clan, so let's say she made it to 95 (her mom's still kicking at 93 and her grandma made it to 99). That's 20 years (she's 5 years younger than my dad) at $24,000 or $480,000 in SS income. Not counting what she made for her own SS income from age 65 to 75.
Let's say my mom would have retired at the maximum of 65 and gotten $1800 a month. That's $216,000 for those 10 years, until my dad died. So total retirement income for my parents=$576,000 from age 65 to death. Half a million, not bad.
But that didn't happen. My dad retired early, to the minimum amount (which I invented as $1000 a month). So not only did he lose his job's income of several times that amount from age 62 to age 65, but he then lost $1000 every month to early retirement (due to Alzheimer's.) Let's say he made $3000 a month at his job. So $108,000 in real income from selling cars, evaporated. From age 65 on, $12,000 a year of SS, not coming in.
Then we get to my mom. She also had to retire early (age 60), to take care of my dad. So instead of the $1800 a month she should have gotten, she only got $900. Let's say she made $2000/month at her job. She lost 5 years of that real income ($120,000). Then my dad died at age 67 and my mom started to get his SS, $1000 a month rather than the $2000 he would have gotten if he just retired 2 years earlier.
Let's summarize the math.
Mom's early retirement, lost income through not working
$120,000 (5 years x 12 months x $2000/month)
Dad's early retirement, lost income through not working
$216,000 (3 years x 12 months x $3000/month)
Loss of maximum SS for my dad, ages 65-67
$48,000 (2 years x 12 months x $2000/month)
Loss of maximum SS for my mom, age 65-95
$360,000 (30 years x 12 months x$1000/month)
total: $744,000.
So if my mom lives to be 95, she will have lost three quarters of a million dollars in income because my dad had early-onset Alzheimer's.
I invented these figures, but they aren't very inaccurate. I would say that for an average family with one person developing Early Onset Alzheimer's, this is probably close to reality.
Has no one else thought of this? It's really depressing. And it makes me really angry. My parents could have had an enjoyable retirement with almost a million dollars. Now my mom struggles by on the absolutely minimum through no fault of her own--and because I don't work, I can't help her out financially.
"Had a Dad" Alzheimer's Blog http://alzheimersdad.blogspot.com(c) Gevera Bert Piedmont })i({Thank you for visiting! read more..
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Title: Berries Boost Brain FunctionCategory: Health NewsCreated: 3/10/2012 11:00:00 AMLast Editorial Review: 3/12/2012 read more..
Dear Carol: My 87-year-old mother has Alzheimer’s disease. She came down with shingles a few weeks ago, which is being treated, but she’s still in terrible pain. She also has COPD and diabetes. Since the shingles attack, she has gotten very weak and just wants to sleep. She only eats if we feed her, and then she has to be coaxed to eat even a small amount. The family has been taking turns staying with her, but she mainly wants to sleep. Should we call hospice? When do people decide it’s the right time to call? Does the doctor contact hospice or do we? Her doctor hasn’t mentioned hospice, but he says she likely will continue to get weaker. -Melanie read more..
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Betty was left screaming in pain after drinking the fluids she mistook for water.By Bob DeMarco ...
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Perhaps you've heard about the importance of vitamin B12, and how a deficiency in that specific vitamin can cause symptoms that mimic Alzheimer's disease. Well, there's another vitamin that researchers have recently shown to be important in the battle against Alzheimer's....Read Full Post read more..
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The Alzheimer's Reading Room is the number one source of life news for the entire Alzheimer's community. Our goal is to Educate, sometimes Entertain, and Empower Alzheimers caregivers and their families worldwide. read more..
I was stuck at a red light the other day, right next to a cemetery, and several of the graves had little American flags on them. I started to wonder if my dad was eligible for a flag. He got a medical discharge out of the Air Force. I know he wasn't in long enough to get any benefits. Does a flag count as a benefit?
But it's a moot question, cuz my dad doesn't have a grave.
I guess when I decided to cremate him I wasn't thinking about that. When I worked around the corner from the cemetery where my grandpa is buried, I used to get a spicy chicken sandwich from Wendy's and then sit on his grave and eat it. Then I'd go back to work and say that I had lunch with my grandfather. It didn't make me feel CLOSER to him (although I physically was), it just seemed like the right thing to do. I only worked there a couple of months and I haven't been back to "visit" my grandpa since. I have to wonder what state his gravestone is, since I don't think my mom's been there to clean around it or plant flowers and obviously my grandma hasn't driven anywhere in 4 years.
Of course, visiting my father is easy. His ashes are at my mom's. She'd probably let me borrow them if I asked. I guess technically every time I eat at mom's, I'm having dinner with dad like I had lunch with grandpa--he's only on the other side of the wall from the dining room.
But it's weird not to have a GRAVE, with that ponderous gray stone that distills a life into 10 words or less (name, dates, maybe a "beloved father and husband" inscription). The ceremony at the grave site, well those are always terrible and I'm not sad we didn't have one (I'd have been a lot sadder if we had, if you know what I mean). Everyone I know who died has a grave. Except my dad. Does that mean I don't love him? I could spend all my money and buy a plot and pay a backhoe to excavate a hole and put his pretty green stone box underground and put up a big ugly gray stone to tell everywhere were the pretty box is hidden. That seems silly. My mom wants the box buried with her. Fine with me, but I'm keeping a spoonful or two of dad so he can be in the coral reef with me. Because I know how much my dad loved nature and he'd think being a coral reef was awesome. And although no one would ever actually do it for me, I think it's pretty cool that to visit a coral reef grave, you have to scuba dive. "Going to visit my dad, gotta get my tanks filled." The big blue sea, the immense green ocean, becomes your gray stone.
Then again, whether you believe in life after death, or the Elsewhere Bar, or that life is a candle that just gets snuffed out at the end, everlasting life is really when people who are still alive remember you. If you're a fan of Terry Pratchett, the British author whose battle with Alzheimer's started exactly when my dad's ended, you might have read his book Small Gods (it's pretty stand-alone if you're not a Discworld reader). It's about a bunch of gods who no one worships anymore, because no one remembers them. That's what happens eventually to people I guess, no one is alive who remembers you and you fade away. But I've written all this and as long as Blogger is online, even if I die today, people will read my blog and remember my dad. And maybe me. So this blog serves, I guess, as my dad's big gray stone, a place to visit him and say hello. Because he's here, somewhere. "Had a Dad" Alzheimer's Blog http://alzheimersdad.blogspot.com(c) Gevera Bert Piedmont })i({Thank you for visiting! read more..
Later that night I wonder to myself, I wonder if their is a smorgasbord in Heaven?
By Bob DeMarco
Alzheimer's Reading Room
This is what Jim had to eat
Meatloaf, mashed potatoes, green beans,
and macaroni and cheese.Last week, I took Jim, Ruth, and Dotty out to dinner at Cracker Barrel Restaurant. This proved to be a very enlightening experience.
When we were leaving home both Ruth and Jim encouraged me to take the wheelchair. I said, don't worry, I'll get Dotty into the restaurant.
As it turned out, it was a real struggle to get Dotty into the restaurant and seated. This was a real eye opener for me. It is getting more and more difficult to move Dotty around while on her feet.
Note to self. Listen to other people.
Perhaps I should have just asked Ruth and Jim, why, don't you think Dotty can make it? Get some insight and opinion from others when you can.
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I want to tell you, Dotty is amazing. She does not complain about the difficulty walking. She might say, my knees hurt. Or, we might have to stop so I can remind her to start breathing. Occasionally, Dotty might say, I don't know what is wrong with my legs. Dotty does say often now, I can't move.
As we arrived at the hostess area I said 4 for dinner.
Ruth then moved in front and quietly leaned in and said to the hostess, we need a nearby table. As it turns out there was a table right near the front, in the first section.
Observation. Isn't it amazing how some people are just "so plugged in"? Ruth is the one plugged in. I was so focused on Dotty that I would not have thought to ask for the nearest table.
It only gets better. Jim and Ruth immediately took the two inside chairs against the wall. This left the two outside chairs, the easiest to reach, for Dotty and me. As a result, it was very easy to get Dotty seated. Thank goodness.
At this point, I am seated right across from Dotty and it is easy for me to see her, and to communicate with her.
We began discussing the menu. Jim narrowed it down to three potential meals. While Jim was deciding I had my usual conversation with Dotty. I usually ask her what would you like, how about this, how about that.
In the end, Dotty always says the same thing, I'll eat whatever you order. Dotty can no longer pick and choose, or decide. For me, it is still interesting to hold this discussion with her. Dotty doesn't get frustrated, and neither do I.
When the food arrived, Dotty had two fried catfish fillets, mashed potatoes, and green beans. Jim decided to go for broke and ordered the meat loaf. Ruth went for the chicken pot pie. Me? Country fried steak.
Dotty as usual took one look at her plate and more or less said, "look at all this food, I'll never be able to eat it". Uh huh.
Soon enough the waiter, John, put down a plate full of cornbread and biscuits. Dotty grabbed a cornbread before you could say, well, anything. I asked her, would you like me to put the butter on the cornbread? She answered yes. Then we got to the tricky part.
They have those little miniature tubs of butter, you know those tiny things where you have to peel off the exact right corner of the little tub to get at the butter. I butter up the cornbread for Dotty, and she was already on the attack.
Watching Dotty eat is fun. She really enjoys her food. She looks like a woman on a mission, a happy mission.
Soon enough, Dotty goes for another cornbread. This time I just watch. Dotty tries to get the little miniature tub of butter open. She could not do it. Not to be deterred, she grabs her knife and tries to stab the butter tub right in the heart to get it open. It looks to me like she is trying to murder the butter.
At this point, I reach over, stick my hand out, and say, let me do it for you. Dotty hands me the butter. All of this happens seamlessly, neit read more..
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About eighty percent (80%) of the persons suffering from Alzheimer's disease are still at home. Remarkable when you...
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Ruth says, "Dotty is mad". I didn't cringe. I took an approach that even I didn't expect, and it worked.By Bob...
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Of course, we don't always make the right call regarding every circumstance. But we do our best. I'd hazard a guess that the most painful decision for most of us to make is whether or not it's in our loved one's best interests to place him or her in a nursing home. If it is also in our best interest, then the guilt looms even larger. read more..
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I read Still Alice last night. For those of you not familiar with it, it's a novel written from the perspective of a 50-year old woman with early onset Alzheimer's.
I was expecting something more like Flowers for Algernon, especially as the title character starts off with a PhD and as a tenured teacher at Harvard. If I was writing such a novel (and I still might), I'd do it that way. If you haven't read Flowers for Algernon, it's a story about a mouse named Algernon who is made incredibly smart, and then a human named Charlie who goes from basically mentally retarded to genius by the same process, and it's all told in journal form by Charlie. The unreliable narrator is a great tool when properly done.
I am proud to say that I did not cry, even when she got diagnosed, until page 111, when she started talking about butterflies. My dad loved butterflies long before (and after) his diagnosis, and we covered his memorial picture board in butterfly cut-outs.
I don't think, however, that Alice took me into any uncharted waters. They were all familiar. She can't find the bathroom and pees on herself and feels shame. She forgets one of her daughters. She makes mistakes at work and doesn't realize her poor performance. She was never violent like my dad, but that's rare. I expected more frustration and more control issues.
Two things did bother me, that were left hanging. She forgets to go to her support group meeting, and she can no longer deal with her e-mail to respond to her EOAD friends. It doesn't seem like anyone ever takes her to the meetings or that she ever talks to those people again. Then she leaves the suicide instruction document open on her computer and no one ever remarks on it or looks for her vial of sleeping pills.
The suicide pact was probably the best part of the novel--her way of checking if she's still cognizant of her surroundings. She puts a series of questions on her Blackberry that she has to answer every morning at 8 a.m. and if she can't, she has to go to the Butterfly (suicide) document on her computer and follow the instructions immediately. At first the answers to the questions are detailed and crisp--the exact address of her home and office, the exact birthday of her daughter. Then they get less so, until finally she is simply saying what state her home and office are and getting the birthday completely wrong. But she doesn't even realize it, of course.
I didn't like the character of her husband very much.
His refusal after a while to exercise with her, the whole Sloan-Kettering thing--he was a jerk. Their marriage felt fake. I never thought they loved each other, there was no passion. They never had sex--implied or implicit, offscreen or on. And I would think that's an important part of EOAD--do you still have sex?
As far as a character study of her, and of the disease, it was fairly brilliant, but all the other characters were flat, cutouts moving through her world, even when she is barely diagnosed and showing symptoms.
I would give this book 4 out of 5. It's really good, but it could have been amazing.
I was thinking about the book after I finished it, and how Alice is treated by her co-workers and friends after she admits to her diagnosis, and I realized that it would be better to lie to the world and say "I have a brain tumor." My great-uncle had a brain tumor that caused dementia and everyone rallied around him. My dad had plain old dementia and he was a pariah.
(book cover from Amazon, butterfly montage from www.mgcpuzzles.com--we used it on my dad's board)"Had a Dad" Alzheimer's Blog http://alzheimersdad.blogspot.com(c) Gevera Bert Piedmont })i({Thank you for visiting! read more..
Sadly, last Thursday my pal and Alzheimer's caregiver sidekick, Harvey passed away.By Bob DeMarco ...
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You know it is a slow news day when they put ME on the front page of the paper, above the fold.
The electronic link contains basically the same text as the print article, with a different title:
Blog chronicled woman's dad's experience with Alzheimer's
Posted: Thursday, June 2, 2011 10:17 pm
WALLINGFORD - Search "Alzheimer's blog" on Google and the No. 1 result, above the Mayo Clinic, belongs to a local woman who chronicled the experience from when her father was diagnosed until his death 1,253 days later.
Roberta Piedmont's blog "Had a dad," began as a way to express what she was going through, dealing with her father's disease, but it quickly grew in popularity and became a source of support for others.
"I started it the day my dad was diagnosed," Piedmont said. "I wanted it to be a record of what happened - a journal."
Eventually more and more people started reading it and reaching out to her. Piedmont said she began to see the blog as an important tool for helping others going through the same thing realize they are not alone
"I wrote about the suckiest things," Piedmont said. "I wrote about embarrassing, terrible and awful things. Other people think they're alone, but they're not."
Piedmont's father, Bob Rizza, worked for more than 30 years in the car business in Meriden and Wallingford before he had to retire at age 62 due to the beginning stages of the disease. He was diagnosed a year later, on June 21, 2004, and died on Nov. 26, 2007.
Christina Bowers, a friend of Piedmont's whose mother suffered from dementia, said that Piedmont always talked about the blog. "She's a writer at heart, this is who she is," Bowers said.
Bowers said she felt that she and Piedmont were on a journey together, and they often swapped stories. It made her feel better, Bowers said, to be able to confide in someone who was dealing with a similar situation.
"There are some resources out there, but a lot of them require you to make a phone call or meet with strangers," Bowers said. "On the Internet, you're anonymous. Roberta found it soothing."
Joyce Kent, another friend of Piedmont's, said the blog was an important tool to chronicle what her father was going through so other people in the same situation could relate and compare. Kent said the blog helps from "the research end of things." With blogs such as Piedmont's people can compare symptoms, timelines and get a better understanding of how the disease affects different individuals, Kent said. Kent had a close friend who was diagnosed with Alzheimer's and could sympathize with what Piedmont was going through, she said.
Piedmont has kept up with the blog since her father's death, though she admits she doesn't post as often as she used to. On Wednesday, going back to posts from 2004, Piedmont said she likes the blog because it gives her the ability to relive a memory if she wants to, but that "these memories aren't stuck in my head, I've written them down on paper."
She also hopes the blog will shed light on some of the effects of Alzheimer's that people don't like to admit. Alzheimer's is often portrayed in movies and television as a disease that one can "snap in and out of," like in the movie "The Notebook," Piedmont said." But "once they're gone, they're gone," she said.
Piedmont has donated money to the Alzheimer's Association in the past, but has a big fundraiser in the works for this weekend. She is hosting a tag sale on Saturday from 9 a.m. to 2 p.m. at her home, with the help of Kent, Bowers and several other friends. She said she had been planning a tag sale for a while, but when she learned the Alzheimer's Association was temporarily matching donations, she got friends together for a sale. All the proceeds will go to the association.
Piedmont said she hopes the money will help the association in its efforts to find a cure for Alzheimer's. Of the terminal disease, Piedmont said, "I know read more..
I was awake at 3 a.m. and beyond this morning. I was sick, I've got a cold and an ear infection. First thing this morning I rescheduled the cats' vet appointment so I could stay home all day and just be sick in bed. (And I called the doctor about my ear.) Moments later, my mom called me. She said she had "bad news" and I knew it was death but I thought it was the dog or cat or some distant relative (last summer, for instance, one of my second cousins went on a "vision quest" and was found dead under a tree three weeks later with an uneaten banana and a bottle of water, and a few years ago my mom's cousin was a Memorial Day weekend motorcycle fatality statistic).
But no, not so distant. Apparently around 3:30 (as I was lying awake plotting my sick day), my mom was woken up by "a god-awful noise" coming from my grandmother's room, like a rattling gasping for breath. When she went in, my grandmother was unresponsive with fixed eyes. She called 911 and the fire department intubated (sp?) her and brought her to the hospital.
Grandma had a "massive stroke"--the one the doctors had been warning her would happen if she didn't take her blood pressure medicine. Of course she always laughed them off and went right on taking 1/4 of a pill instead of whatever her real dosage was. She'd had a minor stroke a while back and my mom called me out of work and it ended up being nothing that serious (that was when she moved in with my mom, 4 1/2 years ago, right before my dad died).
But this one, yeah, this is it. My mom told me right out at 8 this morning "she's not going to make it this time." She's on a respirator. If the EMTs hadn't put the tube in her she'd be dead already. They did a scan of her brain and it's massive bleeding everywhere (like my dad after he hit his head) no chance of recovery. I don't want a vegetable for a grandma. I had one for a dad and I didn't like it one bit.
I called the funeral home and had them pull the paperwork for my grandma's prepaid funeral (from 1987 when her husband died)--why my mom couldn't think to do that, I don't know, but they appreciated the heads-up. I don't know if my mom has called my grandma's brother or sister-in-law. I told my godmother (my grandma's niece).
I just never know what to do while in death limbo. Call everyone and say "she's gonna die" and then tomorrow or the next day call and say "she died"? Wait until she's dead? What if her brother wants to come from California to say goodbye? What about the few friends she has left? I'm not good with complex thinking when I'm sick with some kind of hideous flu. I suppose I have to write the obituary too. It's all I can do to compose this post, obit will have to wait.
My mom has grandma on a DNR, obviously--she's 93 (her 94th birthday is this weekend; the picture above is from last year's party). But right now the ventilator is keeping her alive. Her heart is strong and healthy but the doctors don't know if she'll keep breathing without the tubes or just die. So that's what I get to do this afternoon, go and pull the plug on my grandma and watch her die.
Happy Valentine's day to my family, right? My dad died on Thanksgiving, and my grandpa, great grandpa and great grandma all died within days of my birthday. My husband's grandmas both died around his birthday (one actually ON the day). So why not ruin Valentine's day with a death anniversary too?
I need to think more positively, but right now I can't. The doctors say she's not in pain. She's simply not there anymore. Hopefully she won't linger and suffer like my dad did (and he suffered--there was no lying to me and saying "he's not in pain" even though he was a vegetable; he moaned and thrashed like an animal in a trap). I didn't get to say goodbye to her properly but really, that's rare. When someone is hanging on forever like my dad, you never know when the last time will be to say it, and the flip side read more..
As it turned out, the rock solid foundation of understanding Alzheimer's disease that I acquired, allowed me to develop all kinds of techniques and strategies to make my caregiving effort more effective.
By Bob DeMarco
Alzheimer's Reading Room
Bob DeMarcoPreviously, I put up an article -- What Is Alzheimer's Disease? What It Does to the Brain (Video).
The article contained what I believe is a required video for every Alzheimer's caregiver, their families, friends, and anyone that wants to gain a basic understanding of how Alzheimer's disease effects the brain.
Please consider sharing the link to the article with family and friends in the Alzheimer's community.
In order to become an effective Alzheimer's caregiver you need to build a good foundation of understanding about Alzheimer's, and dementia.
This starts with a basic understanding of what Alzheimer's does as it travels through the brain. The video, What Is Alzheimer's Disease? What It Does to the Brain, is a clear, down to earth, easy to understand explanation of how Alzheimer's disease shuts down the brain. This is in relation to the stages of Alzheimer's. How the general pattern unfolds as the brain shuts down.
You cannot care effectively without an understanding of what is happening, and more importanly, what is likely to happen. It also helps to understand the stages of Alzheimer's. Not so you can recite the stages, so that you can come to expect in advance the changes in memory, mood, behavior, and motor skills that are likely to occur over time.
Understanding these likely changes will help you to accept them when they begin to happen. More importantly, you will come to understand that this happens to most of us -- not just you.
You have to get out in front of the disease and these likely changes, in order to understand, cope, and communicate effectively with someone suffering from Alzheimer's.
Could you start a car without the key? Could you drive a car blindfolded?
Here is a simple example. Many Alzheimer's patients ask the same question over and over. Others repeat the same challenging behavior over and over. If you fail to understand that these are common symptoms of dementia, it is unlikely that you will be able to deal effectively with these behaviors.
When a person repeatedly asks the same question, or repeatedly engages in the same behavior over and over, does it stress you out? Drive you crazy? Make you feel confused and totally disconcerted?
Do you understand why this is happening? It happens in part because the Alzheimer's patient can no longer store the answer to a question in their brain. So they ask again. They would not be asking if they did not have a need to know. If you understand that they "need to know" you can work on supplying this need, instead of complaining to anyone that will listen that the behavior is driving you crazy.
The part of the brain that allows us to store information, and remember, doesn't work for a person who is deeply forgetful and living with dementia. This will happen to most patients sooner or later.
Without fail, we get new readers every week that are being driven crazy because they are being asked the same question over and over. I know how they might be feeling, and so do most of you reading this.
I understood when my mother was acting strangely that I had to do something. In my case, I embarked on a mission to understand Alzheimer's disease upside down and backwards. The key word here is mission. I was up at 6AM and sometimes still up 2 AM doing research.
As it turned out, the rock solid foundation of understanding I acquired allowed me to develop all kinds of techniques and strategies to make my caregiving effort more effective. I knew what was happening, why it was happening; and as a result, I could focus on developing an effective solution to the problem.
Sadly, much of the information read more..
Title: Alzheimer's, Dementia Care to Cost U.S. $200 Billion This YearCategory: Health NewsCreated: 3/8/2012 2:05:00 PMLast Editorial Review: 3/9/2012 read more..
This new study helped clarify the key mechanisms involved, which will help us better understand the usefulness of...
The Alzheimer's Reading Room is the number one source of life news for the entire Alzheimer's community. Our goal is to Educate, sometimes Entertain, and Empower Alzheimers caregivers and their families worldwide. read more..
He has had a sharp decline the past 6 months and I am finding it more difficult to bring in new caregivers to sit...
The Alzheimer's Reading Room is the number one source of life news for the entire Alzheimer's community. Our goal is to Educate, sometimes Entertain, and Empower Alzheimers caregivers and their families worldwide. read more..
I am being bombarded with emails asking me about off label Bexarotene, promoting Coconut oil, and asking me about...
The Alzheimer's Reading Room is the number one source of life news for the entire Alzheimer's community. Our goal is to Educate, sometimes Entertain, and Empower Alzheimers caregivers and their families worldwide. read more..
Whether from physical problems or lack of appetite, eating often loses its appeal to frail elders. Regardless of the reason their loved one has for not eating well, caregivers can be stressed by the situation. We know the value of nutrition. We know the feeling of hunger. We want to help them stay nourished. read more..
At the opening ceremony of the Alzheimer’s Disease International conference, global health expert Professor Peter Pilot announced that Alzheimer’s disease is one of the largest global health challenges and called... read more..
The Journal of Alzheimer's Disease recently published a study that measured brain volume of older adults without dementia who had symptoms of depression and/or were taking an antidepressant medication. What they were trying to determine was if depression and/or the use of antidepressant medications affected brain size....Read Full Post read more..
Dotty talks about her mother, sings Shine on Harvest Moon, and then talks with Harvey.By Bob DeMarco ...
The Alzheimer's Reading Room is the number one source of life news for the entire Alzheimer's community. Our goal is to Educate, sometimes Entertain, and Empower Alzheimers caregivers and their families worldwide. read more..
The Walk to End Alzheimer's was this morning, at Lighthouse Park in New Haven, which is on the beach and has an indoor carousel.
The four flowers from my team. The colors got confused somehow, my friend's shouldn't have been yellow which is caretaker but they told us yellow was supporter.
My hubby with his Alzheimer's shirt on.
My mom with her Alzheimer's shirt on.
I found this cool rock on the beach with a cross on it. I'm not Catholic but my dad was so I kept it.
Me with some of our flowers.
Part of the Memory Garden. Blue was for people who had Alzheimer's.
Starting line.
3 memory flowers for my dad, planted in my yard. They are fun, they spin like pinwheels.
I raised, between my tag sale and Facebook, almost $400 for the walk (and they gave me 4 t-shirts, even though it's $100 per shirt). It was very crowded. The day started out rainy and horrible but by the time we got there, it was gorgeous and they said it was the biggest turnout ever. When I tagged my pictures on Facebook with Lighthouse Park, it said 1077 people were checked in there--and I didn't use FB check-in there (I used FourSquare) and neither did anyone with me. I'd say over 2,000 people."Had a Dad" Alzheimer's Blog http://alzheimersdad.blogspot.com(c) Gevera Bert Piedmont })i({Thank you for visiting! read more..
I was interviewed yesterday about the Alzheimer's walk this weekend. Last weekend, I had another tag sale (mostly books and jewelry supplies) and raised another $120 (miserable rainy weather) for my team, adding to the $200 or so donated through Facebook friends.
OCR article text
Daughter raises funds for Alzheimer’s work
By Russell Blair, Record-Journal staff
Roberta Piedmont managed to raise more than $1,000 on her own this year for Alzheimer’s research.
What if more people pitched in to help eradicate the disease, she wonders.
“I had a friend tell me ‘with enough shovels, you can move a mountain,” she said.
A year of fundraising for the Alzheimer’s Association will culminate for Piedmont this weekend when she takes part in the Walk to End Alzheimer's in New Haven on Sunday.
“I’m looking forward to it. It's a chance to meet other people and talk and share stories,” she said.Piedmont’s team includes her mother, her husband and some friends. Piedmont said that while many people know of Alzheimer’s, only those who have seen its effects understand the severity of the disease.
“When I tell somebody, they either look at me with a blank look on [their] face, or their own story comes out,” she said.
Piedmont’s father, Bob Rizza, worked for more than 30 years in the car business in Meriden and Wallingford before he had to retire at age 62 due to the beginning stages of the disease. He was diagnosed a year later, on June 21, 2004, and died on Nov. 26, 2007.
Piedmont has also advertised the walk on her popular Alzheimer’s blog, “Had a Dad.” Piedmont’s blog is the No. 1 result on Google for the search of “Alzheimer's blog,” above the Mayo Clinic's blog and a blog maintained by the Alzheimer’s Association. Piedmont's team name for the walk is the web address to her blog: Alzheimersdad.blogspot.com. Piedmont said her own fundraising is an example that every individual can do something to help.
Christy Kovel, senior director of communications for the Connecticut chapter of the Alzheimer’s Association, said the walk is the biggest annual fundraiser for the chapter.
“It’s our signature event,” she said. “We’re expecting a very large turnout.”
Last year, the organization had more than 3,500 walkers in events across the state.
“All kinds of people come,” Kovel said. “We get people who lost family members to the disease, people who are suffering from the disease, those who bring their loved ones who have the disease and people who work at facilities that provide care for Alzheimer’s. There are children’s activities; it’s really a family-friendly atmosphere.”
According to data from the Alzheimer’s Association, 5.4 million people suffer from Alzheimer’s disease and someone develops the disease every 69 seconds. The organization estimates that by 2050, as many as 16 million people will have Alzheimer’s. In Connecticut, 764 people died from the disease in 2007.
Piedmont said that it’s important to raise awareness about the disease, and the effects it can have. The recent diagnosis of Tennessee women's basketball coach Pat Summit with early onset dementia, Alzheimer's type, has helped bring new attention to the disease, she said.
“Lately more people have been telling me their own stories. This is a disease that touches almost everybody,” Piedmont said.
The Sunday walk will take place at Lighthouse Point Park, 2 Lighthouse Point Road, New Haven. Walkers can register online at www.alz.org or in-person Sunday at 9 a.m.
rblair@record-journal.com
if you would like to donate to my team please click below or in the sidebar.
"Had a Dad" Alzheimer's Blog http://alzheimersdad.blogspot.com(c) Gevera Bert Piedmont })i({Thank you for visiting! read more..
You first suspected something was wrong when your mother took too long to run some errands. You thought she just wanted some time to herself, but she was gone more than an hour longer than planned, and when she did return, she snapped at you for asking if everything went okay. Something seems different about her, but you shove the thought away. Then your dad takes you aside and tells you he’s worried. Your mom left the water running in the sink the other day and just walked away. When he commented on it and turned it off, she yelled at him. She said she had to leave it running so it wouldn’t freeze. It was 80 degrees outside. read more..
Dear Carol: My mother and I don’t get along. She is manipulative and often nasty to me, so I’ve had to distance myself from the chaos. I keep intending to walk away completely, but I can't do that because I want to help take care of my dad, or at least spend time with him. He has Alzheimer’s and doesn’t even know who I am, but I don’t entirely trust my mother with him. I’m not sure he’s being cared for properly. If I ask questions about his care, or just day to day issues, she thinks I’m criticizing her and emotions escalate. If I try and turn away, I get the martyr routine. I remind myself that it’s not about us, it’s about my dad, but its hard. Any advice? - Monica read more..
The Cochrane Collaboration recently published a study that reviewed previously conducted research on cognitive exercise and its effect on dementia. The basic question of the review reflects this concern: We ...Read Full Post read more..
Title: Exercise a Defense Against Dementia: StudyCategory: Health NewsCreated: 2/13/2012 2:05:00 PMLast Editorial Review: 2/14/2012 read more..
