The Case for Choice
Originally posted at www.healthcentral.com
Going It Alone
Originally posted at blog.aarp.com.
But due to circumstances both beyond and within one’s control, the number of those living solo lives (as a percentage of all households) in the United States is 28%. And we aren’t even the highest: Britain logs in at 34%; Sweden at a hair raising 47%. Then there is Brazil with 10% and India the lowest at 3%Frozen Snickers for Everyone
Remember the good old days when statins were the safest drug to take? Oh, wait, that was last month.
Fighting Alzheimer’s: What Would Thatcher Think?
Editor's note: The guest post below was written by James A. Cassidy, a caregiver and father of Colette Cassidy, a former news anchor who recently wrote for the first time about her mother's battle with early-onset Alzheimer's.
Up Close and Personal: My Mother and Alzheimer’s
As many times as I read reflections of a daughter writing about her mother with Alzheimer’s, it never gets old; it never fails to punch me in the stomach; it never fails to make me tear up. Such is the case with Colette Cassidy, a former news anchor, trained to be dispassionate about every story. But there is no being dispassionate about your mother living with Alzheimer’s. Thank you, Colette, for sharing your poignant story:
Read More…The Iron Lady Fights Her Toughest Foe
Well, it’s a biopic so you have to expect that there will be quibbling over interpretation. You know, the usual stuff: was he the favorite; was she a mean witch; was he a private cross-dresser? Who really knows?
The new biopic The Iron Lady, currently showing in your favorite Cineplex, has sparked controversy – even outrage – due to the fact that the central figure, Margaret Thatcher, is still alive.
Read More…My Mother, My Grandmother, My Daughter, Myself
Note: this is first in a series of posts about women and Alzheimer’s
When I was home during intersession in my junior year of college, I went with my mother to visit my grandmother in a nursing home. She had what was called “hardening of the arteries.” An articulate, determined, domineering woman-of-her-era, she was now a confused, rambling old lady. I watched as my mother gathered her mother’s soiled laundry to wash at home. Until then, my mother’s laundering skills were nil – unless you counted her rinsing out her nylons at night. But this was her mother and our family now - both figuratively and literally - did not wash our dirty linen in public.
When I was 24, I brought my 3-month-old baby daughter to introduce to my grandmother. By then my grandmother simply stared ahead in a daze, her face hardened, angry about the hand life had dealt her. To be honest she looked so forbidding I was worried that she might scare my baby. My mother took her swaddled grandchild and showed it to her mother.
Read More…Walk a Day in Her Shoes
When my mother, as yet undiagnosed with Alzheimer’s, asked me to get a pair of glasses from her purse, I stumbled upon a traffic ticket. I sighed, knowing my mother’s propensity for speeding. I scanned the summons to find how fast she was going this time. Much to my surprise she had been pulled over for going ten miles-per-hour on the middle lane of The George Washington Bridge. Rather than cutting off traffic, she had been virtually leading a parade of cars at a snail’s pace. Horns were blaring, but my mom thought there was a party going to a wedding reception. You have to understand that this was a woman who could have given Mario Andretti a run for his money.
Most people will tell you that the worst day for a person with Alzheimer’s disease is the day they are asked to give up their keys because it is no longer safe for them to drive. I remember the day vividly because I was the one who had to ask my mom for her keys. Normally, of course, that would have been my dad’s domain, but he already had been reduced to villain status in my mom’s mind. She saw him as the person who wouldn’t let her go to the bank to check her safety deposit box three times a day; the person who had put up a post-it on the dishwasher so she wouldn’t fill it with newspapers; the man who at night looked like different men – all evil, all trying to rob her of the $100 she had hidden.
Read More…The Power of US and 2012
When my husband George and I launched the USAgainstAlzheimer’s Network last year, our lofty vision was to unite the power of US - researchers, millions of families and advocates, hundreds of companies and our public officials.
We believed (and still do) that together, we will spur the innovations in science, industry practice and regulatory processes essential to the discovery of safe and effective therapies needed to stop Alzheimer's.
Hit and Run
Recently, the New York Times ran another in their series of articles about concussions and football players. Written by George Vecsey, this piece focused on a college football player, Derek Owens, who has joined with other varsity players – three football players and one soccer goalie – in a class action suit that claims the NCAA has been negligent regarding awareness and treatment of brain injuries to athletes.
AIDS and Alzheimer’s: Two Deadly Diseases, Two Different Stories
Tackling Concussions
Good news for football moms…and football dads…and football grandparents…and anyone who watches football…and, well, anyone who cares about human life and scientific research. (There must be a category you fit into.)
NFL Commissioner Roger Goodell, at first in denial about the link between player’s repeated concussions and degenerative cognitive function or Alzheimer’s later in life, has made a laudable 180-degree turnaround. He is now a vocal champion for the safety of his players: “There is no issue of greater importance when it comes to player safety than the effective prevention, diagnosis and treatment of concussions,” Goodell told the 2011 Congress of Neurological Surgeons. “The more we can learn about the brain, the better for all. And we can be the leaders.” Goodell has found religion.
Why is fighting Alzheimer’s important? Exclusive Q&A with George Vradenburg
Earlier this month, George Vradenburg participated in his first meeting of the national Advisory Council on Alzheimer’s Research, Care and Services, which is charged with developing the first-ever national plan to combat Alzheimer’s. Using some connections (namely, that he’s my husband), I was able to secure an exclusive interview with Mr. Vradenburg, and we discussed how Alzheimer’s has affected him personally and the work he’s done to stop the disease.
TV: Thank you for meeting with me to discuss your work to end Alzheimer’s by 2020, Mr. Vradenburg.
GV: Always a pleasure, Mrs. Vradenburg.
TV: What were your thoughts about Alzheimer’s before it entered your personal life?
GV: I’d never heard of this disease until it struck the mother of the love-of-my-life, Trish. Then I saw it up close and personal. How frightening it is to the victim who does not know what is happening as they slowly, slowly lose their mind and then the control over their body and then all consciousness of the world around them. And what it does to a loving spouse who feels helpless as their loved one is dying over years and years and they can’t do anything about it. And what it does to a family as the relationships splinter and falter and become tangled and confused. Once I saw this disease up close, I wanted to fight it. It was my wife, who first took this disease on through her plays and then through fundraising events, who enlisted me in the Alzheimer’s army.
Read More…In Sickness and in Health: A Response to Pat Robertson
When Pat Robertson answered a caller's question on his radio show stating that divorce is a reasonable option for Alzheimer's patients' spouses if they're going to do something in a new relationship, he opened up a hornets' nest of reactions. And many of those hornets had their proverbial stingers out.
Is it okay to check your vows at the door if your marriage partner is slipping into the unforgiving vortex of Alzheimer's? If so, what stage - onset, failing memory, paranoid rants, cognitive disassociation, comatose? Mr. Robertson wasn't that specific. Yet he was clearly wrestling with the reality of that situation.
Read More…Memory, Reality
This college essay for admission to Cornell University was written by my daughter, Alissa, at the age of 17.
The scene is so clear to me. I am wearing my favorite blue and white-checkered dress. Nana has on bright red lipstick, which eventually will end up all over my face after the encore. It was one of my favorite moments – the spotlight on me and Nana by my side. Sometimes I yearn to go back to that moment rather than see how things are today.
Grandpa Wayne
Once in awhile, we'll feature the personal story of someone who has a firsthand experience with Alzheimer's, or who simply wants to find a cure for this unforgiving disease. This is Amanda's story.
If you want to share your own story, CLICK HERE.
I lost my best friend when my grandpa got Alzheimer's. My grandpa passed away from Alzheimer's Disease in 2005; he was 68.
Who Do You Trust?
Two weeks ago, I was sitting here combing through the newspapers and I was ecstatic that the lockout is over: the football season, not the government. The players and owners can get together. Maybe they should coach the government on negotiating and coming together. Oh, wait, they already offered to do that.
I listened to the point, counterpoint the week prior night between President Obama and Speaker Boehner and wondered who was telling the truth. Well, I mean, they can't both be right, can they? But I guess they can both believe their own narrative. So while one believes that the wealthiest 1% and huge multi-national corporations should be taxed more to grow the economy, and one believes that taxing those entities would stifle growth, it is up to us to determine which is more important to each of us.
Not Just Talk: Behind the Scenes at an Alzheimer’s Congressional Hearing
I have been to some Congressional hearings and might I sum most of them up right now: yawn.
Except for the hearing two weeks ago on Alzheimer’s. So maybe you have to be interested – okay, passionately involved – in the subject for a hearing to be interesting. You say Alzheimer’s and I’m there.
I think the headline of this hearing should have been “Alzheimer’s Threatens Global Fiscal Stability.” In other words, Congress, if you don’t fix Alzheimer’s with a cure or way to prevent it, we’re all going under. Already the worldwide number of victims with this as-yet incurable diseases is 35.6 million people. Consider this stat: the projected number of victims with AD is projected to reach 115 million in the coming decades.
As population control advocates always wanted, birthrates are going down. But at the same time, people are living longer.
George Vradenburg, testifying in the hearing. Photo credit: UsAgainstAlzheimer’s.
Read More…The End Game
I read this article today, which relates:
"Beloved science fiction and fantasy writer Terry Pratchett has terminal early-onset Alzheimer's. He's determined to have the option of choosing the time and place of his death, rather than enduring the potentially horrific drawn-out death that Alzheimer's sometimes brings. But Britain bans assisted suicide, and Pratchett is campaigning to have the law changed."
I have seen the ravages of Alzheimer's. Because we have lacked sufficient funds for research, we still appear to be years (hopefully not decades) away from a magic cure or way to avert this hideous killer. And make no mistake, Alzheimer's is hideous. It extinguishes a life and often, the lives of loved ones in a slow, painful, violent assault on your mind and being. So with no hope of help on today's, tomorrow's or next year's horizon, suicide seems like a reasonable way to end a life.
But there is still that slippery slope. If you are depressed - not an irrational reaction to being told you have a fatal disease - who's to say that time and science isn't on your side and that you won't come out of it with medication and be able to live out your life in a fairly decent way, giving yourself and your family the quality of life and closure that you need? But if you're dead, you're dead. No reconsideration, no second chance. Or...an insurance company can determine it is time...Or...a relative can show that you are no longer capable to live on your own and are so far gone and, after all, there was no DNR order in place so...
Responding to “Our Irrational Fear of Forgetting”
On Sunday, May 22, Margaret Morganroth Gullette wrote an op-ed in the New York Times, titled, Our Irrational Fear of Forgetting.
And I responded to her, in my letter to the editor. But I didn’t quite get everything off my chest.
There is so much wrong with her editorial.
This woman is in denial.
We are happy she had such a good experience with her mother and Alzheimer's. Sadly, that is certainly not the case with the majority who suffer and the families that cares for them.
Attribution: maveric2003 via Flickr
Mrs. Gullette had the luxury of visiting her mother in an assisted living home and leaving the chaos at the door. She didn't change her mother's diapers, or suffer paranoid accusations, or deal with inevitable depression. Most families do not have that luxury. They either spend 24-7 with the victim and put a hold on their own life for 8 to 20 years, or put their mother/father/husband in a nursing home and go bankrupt.
Mrs. Gullette pointed out that ONLY 1 in 8 have Alzheimer's after 65 (apparently ignoring the 1 in 2 at 85). But still, 12.5%? That is an outrageous percentage to simply accept. Are you 65? Do you want those odds?
People are afraid of Alzheimer's, and they should be.
Mice are Nice
It's true. I used to hate those rodents with the wiggly whiskers and the long tail who could, if they bit me, give me rabies. While everyone else adored the Disney animated feature, "Ratatouille," I was repelled by it. I mean, who cares that Remy (the hero) is the most talented chef in Paree? I have no interest in having either a rat or mouse (probably a sous-chef) get their little whiskers in my quiche.
But I'm reevaluating my thinking.
Attribution: Ernst Vikne via Flickr
Up Close and Personal
Every week, we'll feature the personal story of someone who has a firsthand experience with Alzheimer's, or who simply wants to find a cure for this unforgiving disease. If you want to share your own story, CLICK HERE.
This is Maureen's story.
My beautiful mother, who worked her whole life, was diagnosed with Alzheimer's at the age of 68. She had just buried my Dad a year prior and her sister in 2003. She watched both of them suffer and was there at their side every day in the hospital praying and caring for them.
I don't know if loosing both of them a year apart was too much for her but she started showing signs of Alzheimer's right after her sister died. She was not able to handle the paperwork and financial burden that comes from loosing a family member. She had loved to travel and was able to take a couple more trips with my Dad's sister who was her travel companion for years. Then it got to be too much and we had to take her car away from her. As the disease progressed, my oldest brother had lost his job and volunteered to take care of Mom. She's been able to stay in her own home, which is her safe haven, and Tom takes great care of her. We all know the time will come when it will be too hard to keep her home but we hope to do it as long as possible.
Meryl and Me, Part 2
Over our dining room table we worked out a plan for a fundraiser for Alzheimer's. Ellen Proxmire and others were opting for a small, manageable event. Tony Sudler, the head of the Virginia/Maryland Chapter of the Alzheimer's Association (a truly wonderful chapter) was willing to take either/anything. My husband George was almost 100% now, after having suffered a massive heart attack the year before (but that•s another saga for another time). Still, he was unsure if he should take on a big event. George tentatively voted for small; Meryl and I exchanged sly glances and our hands shot up for a big event - a Gala. If we were going to go down, we might as well do it with fanfare. But then Meryl and I were finding that, high cheekbones aside, we were pretty darn similar.
Now I know that it's hard to find a bff (best friend forever) on the north side of, shall we say, 40 (I mean really north), but that's what was happening with Meryl and me. In the beginning it was strictly about the clinical side of the disease, and the Gala. And though most everyone with Alzheimer's generally slips into the same chasm in the same unforgiving way, the specific details are always different.
My Mom was coming up on her 48th wedding anniversary when we could no longer admit she was not just forgetting a few things. When it became profound (within a year, and she could no longer toilet herself), my Dad placed her in a nursing home.
Meryl toileted Harvey every day and during the night as well, often having to change the sheets afterwards. In the morning, she helped 6'2'' Harvey to the bathroom/shower - which she had converted from a powder room/closet - and brushed his teeth, showered him and gave him an old-fashioned shave. She made sure to dress him in a spiffy casual outfit, and then their day began.
When I asked if I could meet Harvey, Meryl was shocked. Before Harvey showed distinct signs of Alzheimer's, Meryl was hesitant to say anything to her friends about his diagnosis. He only seemed...different, odd, was she sure Harvey was all right? She wanted to protect "his dignity." After she told friends that Harvey had early onset Alzheimer's, the invitations started to dwindle. But why? Were they afraid Alzheimer's was catching? Were they afraid to face what their future might be?
Unthinkable
Larry King returned to CNN last night with a timely and necessary one-hour special, "Unthinkable: The Alzheimer's Epidemic." It was an excellent overview of this disease - a tsunami waiting to happen - and Mr. King even threw in some hope.
The program began with the origin of the disease - Dr. Alois Alzheimer, a doctor and academic, presented a key paper in 1906 describing a clinical case of dementia and was an examination of the behavior. 1906 - and we still have no medical cures in 2011. Closer, hopefully, but without needed funding for research from Congress, someone else may be reporting no cure in 2116.
But I digress.
Larry King rolled out the facts:
These are facts, but it doesn't embrace a view until he got up-close and personal. That happened when the show focused on the personal stories of stars and a family facing a double dose of the disease.
Read More…New Alzheimer’s Guidelines
The New York Times reported last week that for the first time in 27 years there are new guidelines for Alzheimer's, reflecting mounting evidence that Alzheimer's is ravaging in your brain for years, even decades, before any evidence of Alzheimer's appears.
So now there are three stages: Stage Three is full-blown Alzheimer's Disease with all the indignities it has to offer. A doctor can identify the symptoms and reliably diagnose the disease - well, as reliably as he can without a definitive autopsy - but, really, who's that curious? Diagnosing this stage is important. The family and the Alzheimer's victim should have a picture of what the progression of AD will look like and be able to plan for their economic future. Additionally, they will be able to access medicines that can slow down the progression for a few years.
Stage Two is a little more complicated - at least for me; it's called Mild Cognitive Impairment, or MCI. To identify MCI from Alzheimer's, you need to identify low cognitive performance in one of five areas - one, and I have two. The first is lack of concentration. The thing is, I remember having that since I was six years old. While the other first graders were learning how to multiply, I was looking out the window. I have never heard a clergyman's entire sermon, the middle of a graduation speech, the directions to Buffalo. The other area is memory. I have never been able to remember names. I tell my kids to wear nametags. I named my dog Woof because that's what he does. I have never memorized a globe. What grade do they teach geography anyway - 3rd grade, 5th grade? I tried to memorize the US states on a map in my thirties. Don't ask me where Indiana is. I was still looking out that metaphorical window.
Read More…
