Some folks are getting more and more upset with the Alzheimer's Association. I am happy to give them as much publicity as I can. This is important because so many of us look to alz.org for information.
Dear Alzheimer's Association Leadership
Saturday, August 6, 2011
Alzheimer's can grab hold of your mind early
There are loads of good Alzheimer blogs out there. I like this one from Salinas, CA.
From Home Care Monterey CA - Family In-Home Caregiving Blog - View from an (unnamed) private duty caregiver
With Medicare, Medi-Cal and Private Insurance all looking to slash costs, some are questioning whether it is worth the financial cost of testing for a disease if there is no cure for it. But what about the human cost if someone has disturbing symptoms and a Doctor doesn't want to test for a disease because there is no cure?
This is a disturbing moral dilemma that I am sure will be more and more common as more baby boomers retire and the cost of medical care continues to soar. The Monterey Herald highlighted this issue on the front page of the health section on Thursday, with a focus on the tragic Alzhiemer's disease.
"I don't remember if I had a bath," Barbara Lehser, only 54 years old, told the paper. "It took me two hours to follow a recipe. I drove to my childhood homestead the other week instead of my own home. It's really scary," she said. Her Doctors and many others are arguing over whether to test her for Alzheimer's disease.
The debate was in high gear at the Alzheimer's Association International Conference held in Paris France last week (July 2011), where research on new methods such as easier brain scans, an eye test and a blood test made it clear there will be more tools for Alzheimer's diagnosis in the future.
Current drugs only treat Alzheimer's disease symptoms. They only work on half of the people they are prescribed to, and they only last for one year on average. Some argue against diagnosing and treating Alzheimer's victims. There is no data "to show that knowing makes any difference in outcomes. Until we do, this is going to be a tough sell," Dr. Kenneth Rockwood of Dalhousie University told the paper.
As regular readers of my blog know, I am an avid supporter of the Alzheimer's Association, a great group of people who help the families of those suffering from Alzheimer's disease. They are also the largest private funder of Alzheimer's research in the United States and have been involved in every major discovery over the past three decades. Having cared for my grandmother for more than five years before she passed away in January, I can tell you that there is nothing more terrifying than losing your mind and not knowing why. I completely disagree with Dr. Rockwood and anyone else who is in support of letting sleeping dogs lie.
If someone is losing their memory, or in the case of Ms. Lehser, driving back to a childhood residence instead of going home, they want to know why. Although the research studies indicate that treatments for Alzheimer's disease are only 50% successful and last only a year, on average, averages can be deceiving. We went through myriad medications for Nana, and have done the same for numerous Clients of Family inHome Caregiving with Alzheimer's and dementia. Some work, some don't. Everyone has different body chemistry. But having even one day with a loved one who is disappearing before your eyes is better than nothing. I wouldn't give up any of those lucid moments with my grandmother for any amount of money.
I once worked as a temporary employee for an HMO and at their weekly staff meeting they were talking openly about how they wished a prematurely born baby would die. The ICU care was just killing their budget and their bonuses were going to suffer. I walked off of the job in disgust. We can not make life and death or quality of life decisions based on money, it is not moral. Ms. Lehser's story is, thankfully, a rare one. Most people don't get Alzheimer's disease until they are in their senior years.
However, it is not unheard of.
In a village in Columbia, early onset Alzheimer's affects almost everyone. Their memories start failing in their 40's, sometimes as early as 32, and the average resident has full-blow Alzheimer's by the age of 47. Tragic as it is, the village is a great setting for a research study. Inbreeding and environment are two possible causes. Unfortunately the region is filled with drug traffickers and it's been difficult to get a full-blown research project done. However, it does show two things. One: Alzheimer's doesn't affect everyone, and there are likely cause and effects that can be discovered by studying populations like this; and, Two: the concept that Alzheimer's disease is an old person's disease that nothing can be done about because it is a function of age is a false one.
From Home Care Monterey CA - Family In-Home Caregiving Blog - View from an (unnamed) private duty caregiver
With Medicare, Medi-Cal and Private Insurance all looking to slash costs, some are questioning whether it is worth the financial cost of testing for a disease if there is no cure for it. But what about the human cost if someone has disturbing symptoms and a Doctor doesn't want to test for a disease because there is no cure?
This is a disturbing moral dilemma that I am sure will be more and more common as more baby boomers retire and the cost of medical care continues to soar. The Monterey Herald highlighted this issue on the front page of the health section on Thursday, with a focus on the tragic Alzhiemer's disease.
"I don't remember if I had a bath," Barbara Lehser, only 54 years old, told the paper. "It took me two hours to follow a recipe. I drove to my childhood homestead the other week instead of my own home. It's really scary," she said. Her Doctors and many others are arguing over whether to test her for Alzheimer's disease.
The debate was in high gear at the Alzheimer's Association International Conference held in Paris France last week (July 2011), where research on new methods such as easier brain scans, an eye test and a blood test made it clear there will be more tools for Alzheimer's diagnosis in the future.
Current drugs only treat Alzheimer's disease symptoms. They only work on half of the people they are prescribed to, and they only last for one year on average. Some argue against diagnosing and treating Alzheimer's victims. There is no data "to show that knowing makes any difference in outcomes. Until we do, this is going to be a tough sell," Dr. Kenneth Rockwood of Dalhousie University told the paper.
As regular readers of my blog know, I am an avid supporter of the Alzheimer's Association, a great group of people who help the families of those suffering from Alzheimer's disease. They are also the largest private funder of Alzheimer's research in the United States and have been involved in every major discovery over the past three decades. Having cared for my grandmother for more than five years before she passed away in January, I can tell you that there is nothing more terrifying than losing your mind and not knowing why. I completely disagree with Dr. Rockwood and anyone else who is in support of letting sleeping dogs lie.
If someone is losing their memory, or in the case of Ms. Lehser, driving back to a childhood residence instead of going home, they want to know why. Although the research studies indicate that treatments for Alzheimer's disease are only 50% successful and last only a year, on average, averages can be deceiving. We went through myriad medications for Nana, and have done the same for numerous Clients of Family inHome Caregiving with Alzheimer's and dementia. Some work, some don't. Everyone has different body chemistry. But having even one day with a loved one who is disappearing before your eyes is better than nothing. I wouldn't give up any of those lucid moments with my grandmother for any amount of money.
I once worked as a temporary employee for an HMO and at their weekly staff meeting they were talking openly about how they wished a prematurely born baby would die. The ICU care was just killing their budget and their bonuses were going to suffer. I walked off of the job in disgust. We can not make life and death or quality of life decisions based on money, it is not moral. Ms. Lehser's story is, thankfully, a rare one. Most people don't get Alzheimer's disease until they are in their senior years.
However, it is not unheard of.
In a village in Columbia, early onset Alzheimer's affects almost everyone. Their memories start failing in their 40's, sometimes as early as 32, and the average resident has full-blow Alzheimer's by the age of 47. Tragic as it is, the village is a great setting for a research study. Inbreeding and environment are two possible causes. Unfortunately the region is filled with drug traffickers and it's been difficult to get a full-blown research project done. However, it does show two things. One: Alzheimer's doesn't affect everyone, and there are likely cause and effects that can be discovered by studying populations like this; and, Two: the concept that Alzheimer's disease is an old person's disease that nothing can be done about because it is a function of age is a false one.
Tuesday, August 2, 2011
What Good is Early Detection of Alzheimer's Disease?
What Good is Early Detection of Alzheimer's Disease?
For an alternative view of whether early detection of AD is always a good idea, click on the link above.
For an alternative view of whether early detection of AD is always a good idea, click on the link above.
Friday, July 22, 2011
Overwhelming Majority of the Public Want to Know If They Have Alzheimer's
Overwhelming Majority of the Public Want to Know If They Have Alzheimer's
Be sure and click on the above link and read the article claiming people want to know if they have Alzheimer's. Then come back here and comment whether you agree.
My husband is angry now that he knows. I am wondering if I did the right thing urging him to seek help for his confusion, agitation, and rage, which was more of a problem than memory loss. I didn't care if he couldn't remember doodley-squat, as long as he didn't yell at me about it.
Another thing: articles are showing up claiming Alzheimer's is a lifestyle disease in more than half the cases:
"More than half of all Alzheimer's disease cases could be prevented through lifestyle changes and managing certain chronic medical conditions, says San Francisco VA Medical Center psychiatrist Deborah Barnes, who analyzed global data involving hundreds of thousands of participants.
The biggest "modifiable risk factors" for the disease are physical inactivity, depression, smoking, midlife hypertension, midlife obesity, low education and diabetes, which account for 51 percent of Alzheimer's cases worldwide and 54 percent in the U.S.
"What's exciting is that this suggests that some very simple lifestyle changes, such as increasing physical activity and quitting smoking, could have a tremendous impact on preventing Alzheimer's and other dementias," Dr. Barnes says.
Well, phooey on that. My husband has the APOE4 gene, one of the markers that spell big trouble ahead. My head is spinning with concerns about Alzheimer's becoming another shame-producer, when people are beginning to speak out about it. I'll bet this Dr. Barnes is a skinny blond runner who skis.
Be sure and click on the above link and read the article claiming people want to know if they have Alzheimer's. Then come back here and comment whether you agree.
My husband is angry now that he knows. I am wondering if I did the right thing urging him to seek help for his confusion, agitation, and rage, which was more of a problem than memory loss. I didn't care if he couldn't remember doodley-squat, as long as he didn't yell at me about it.
Another thing: articles are showing up claiming Alzheimer's is a lifestyle disease in more than half the cases:
"More than half of all Alzheimer's disease cases could be prevented through lifestyle changes and managing certain chronic medical conditions, says San Francisco VA Medical Center psychiatrist Deborah Barnes, who analyzed global data involving hundreds of thousands of participants.
The biggest "modifiable risk factors" for the disease are physical inactivity, depression, smoking, midlife hypertension, midlife obesity, low education and diabetes, which account for 51 percent of Alzheimer's cases worldwide and 54 percent in the U.S.
"What's exciting is that this suggests that some very simple lifestyle changes, such as increasing physical activity and quitting smoking, could have a tremendous impact on preventing Alzheimer's and other dementias," Dr. Barnes says.
Well, phooey on that. My husband has the APOE4 gene, one of the markers that spell big trouble ahead. My head is spinning with concerns about Alzheimer's becoming another shame-producer, when people are beginning to speak out about it. I'll bet this Dr. Barnes is a skinny blond runner who skis.
Thursday, July 21, 2011
Learning to be okay with that -- whatever it is
Yesterday I was sitting in the car, waiting for him to come out of the supermarket, thinking about how one of the hardest things about living with Alzheimer’s is that you cannot call them out on behavior that you normally would. You cannot really hold them accountable when they embarrass you and make fools of themselves. Since he fell and hurt his shoulder, he has decided to let his arm hang as if it were not attached because that gets him attention, and he is talking about this thing to any stranger who will listen. And I just have to be okay with that.
Now, this morning I am sitting at my laptop, watching a baby hummingbird sipping from a feeder right outside my window, thinking about how the medications must be doing him some good. Last summer he could not have formulated a plan in his mind for keeping cold water on hand. However, last night he placed a new case of bottled water on the floor near the refrigerator and said, "I’m putting in six bottles on the top shelf. When you take one out, put one in on the bottom shelf."
I was stunned.
"That’ll work," I said, thinking, by golly that will work.
And now it’s later, and he has asked me a question that left me just as stunned as his plan for the water. Only in the other direction. He asked if he was driving me to the hospital when I have knee replacement surgery next month. He got really upset when I said yes.
"Would you rather I stay in a hotel and take a cab to the hospital?"
"Well, don’t you need a car left there?"
"How long do you think it will be before I can drive?"
"How long will I have to be here by myself?"
The multiverse is imploding.
"It will be between two and four weeks. I’m going somewhere for rehab."
"And I have to stay here and look after the dogs?"
"Yes, and you can bring them to visit me when you pick up my jammies and bring me clean ones?"
"I have to wash your clothes?"
"You can do it. I know you can, just like I'll do for you if your shoulder needs to be operated on."
I could hear him grumbling for several minutes.
Truth be told I am having this surgery now while he can still take care of himself and the animals. I'd say it is just in the knick of time.
And I have to be okay with that, like Paul, in Phil. 4:11, "content under any circumstances."
Paul had to learn this. It was hard for him. I can relate.
Now, this morning I am sitting at my laptop, watching a baby hummingbird sipping from a feeder right outside my window, thinking about how the medications must be doing him some good. Last summer he could not have formulated a plan in his mind for keeping cold water on hand. However, last night he placed a new case of bottled water on the floor near the refrigerator and said, "I’m putting in six bottles on the top shelf. When you take one out, put one in on the bottom shelf."
I was stunned.
"That’ll work," I said, thinking, by golly that will work.
And now it’s later, and he has asked me a question that left me just as stunned as his plan for the water. Only in the other direction. He asked if he was driving me to the hospital when I have knee replacement surgery next month. He got really upset when I said yes.
"Would you rather I stay in a hotel and take a cab to the hospital?"
"Well, don’t you need a car left there?"
"How long do you think it will be before I can drive?"
"How long will I have to be here by myself?"
The multiverse is imploding.
"It will be between two and four weeks. I’m going somewhere for rehab."
"And I have to stay here and look after the dogs?"
"Yes, and you can bring them to visit me when you pick up my jammies and bring me clean ones?"
"I have to wash your clothes?"
"You can do it. I know you can, just like I'll do for you if your shoulder needs to be operated on."
I could hear him grumbling for several minutes.
Truth be told I am having this surgery now while he can still take care of himself and the animals. I'd say it is just in the knick of time.
And I have to be okay with that, like Paul, in Phil. 4:11, "content under any circumstances."
Paul had to learn this. It was hard for him. I can relate.
Sunday, July 17, 2011
anosognosia
Yesterday the truth came out. Last night we watched TV together and never mentioned it. (See yesterday's post.) The following may shed some light on why he really did not know he had Alzheimer's.
When I first suspected AD, I hoped his problems with getting lost and not understanding written or spoken instructions was due to the stress he was under as a truck driver. He retired a couple of months before his 65th birthday, but to him that just made matters worse.
Suddenly, everything was my fault. If I would just leave him alone, he would be fine. It was impossible for me to know if he was in denial that anything was wrong, or if he had become anosognosic, a term I had come across in my internet research, meaning “being unaware of illness or deficit.” Credit goes to Joseph Francois Babinski, a French neurologist, who coined the term in 1914.
Anosognosia differs from denial. Denial is a strategy used to reject something that a person wants to ignore or avoid because it is too difficult to face. Anosognosia, on the other hand, is being unaware of a decline in cognitive skills or even the ability to move. When severe, the person is unaware of himself to the point he stops bathing and changing clothes. This lasted only a few days with Bill.
With some difficulty, I convinced him to see a doctor, who recommended Aricept, which he refused to take, and an evaluation by a neurologist. which included an MRI, blood tests and a spinal tap. Wonky genes showed up in his blood and spinal fluids. My fears were confirmed. It was early Alzheimer’s.
Today he is taking Aricept, Namenda and Seroquel. He seems to go in and out of anosognosia. One day he blames the medications for how badly he feels physically, and says he is only taking them because I won’t let him live in our house if he doesn’t. The next day he might jokingly say he has Alzheimer’s and that is why he is taking the medications. In any case, he minimizes his problems.
His degree of anosognosia seems to vary from day to day and situation to situation. It is difficult to pinpoint when he is anosognosic or just acting out peculiarities. He seems genuinely unaware that he is not always processing written or spoken words, yet he can articulate his opinions clearly, which he does regularly and loudly, sometimes inappropriately to strangers. But for the most part, those opinions are right on target with what the rest of us are thinking, but do not express because our filters are still in place.
He stopped listening to books on tape because he says he cannot follow the plot, but he still enjoys TV programs that are taped and display closed captioning. He can rewind as needed.
Unlike some Alzheimer’s patients who ask the same question repeatedly, he states the same opinion over and over, unaware that he just said that for the hundredth time. He seems unaware of verbalizing almost constantly, chattering to the dog, singing, recalling long ago events, which he tells very well. His short-term memory is partially intact. He cannot remember appointments, but neither can I.
He considers it perfectly normal to be unable to tolerate a cup being removed from the counter, or to open a cabinet and find new, unfamiliar products. Everything must remain where he placed it, or he gets annoyed, even angry. New things seem to frighten him. His world is shrinking to what he can hang on to from the past. He clearly is unaware of this.
His taste in food has reverted to what he ate as a child. Only certain food combinations are tolerated, such as new potatoes with green beans. He will not eat green beans without the potatoes. And he specifically requests certain foods, which he never did before. He would eat what was served and enjoy it.
I’m sure there must be some battery of tests that could determine to what degree he is anosognosic, but I am just as sure he would never submit to them, nor would I want him to. The diagnostic process has been a nightmare for him, so much so that when I asked him to describe it he refused, loudly, emphasizing how sick he is of being sick.
There have been good days since his diagnosis, just not lately. Now I welcome peaceful moments, when we can both forget for a little while, and let things be as we thought they’d be when he retired.
When I first suspected AD, I hoped his problems with getting lost and not understanding written or spoken instructions was due to the stress he was under as a truck driver. He retired a couple of months before his 65th birthday, but to him that just made matters worse.
Suddenly, everything was my fault. If I would just leave him alone, he would be fine. It was impossible for me to know if he was in denial that anything was wrong, or if he had become anosognosic, a term I had come across in my internet research, meaning “being unaware of illness or deficit.” Credit goes to Joseph Francois Babinski, a French neurologist, who coined the term in 1914.
Anosognosia differs from denial. Denial is a strategy used to reject something that a person wants to ignore or avoid because it is too difficult to face. Anosognosia, on the other hand, is being unaware of a decline in cognitive skills or even the ability to move. When severe, the person is unaware of himself to the point he stops bathing and changing clothes. This lasted only a few days with Bill.
With some difficulty, I convinced him to see a doctor, who recommended Aricept, which he refused to take, and an evaluation by a neurologist. which included an MRI, blood tests and a spinal tap. Wonky genes showed up in his blood and spinal fluids. My fears were confirmed. It was early Alzheimer’s.
Today he is taking Aricept, Namenda and Seroquel. He seems to go in and out of anosognosia. One day he blames the medications for how badly he feels physically, and says he is only taking them because I won’t let him live in our house if he doesn’t. The next day he might jokingly say he has Alzheimer’s and that is why he is taking the medications. In any case, he minimizes his problems.
His degree of anosognosia seems to vary from day to day and situation to situation. It is difficult to pinpoint when he is anosognosic or just acting out peculiarities. He seems genuinely unaware that he is not always processing written or spoken words, yet he can articulate his opinions clearly, which he does regularly and loudly, sometimes inappropriately to strangers. But for the most part, those opinions are right on target with what the rest of us are thinking, but do not express because our filters are still in place.
He stopped listening to books on tape because he says he cannot follow the plot, but he still enjoys TV programs that are taped and display closed captioning. He can rewind as needed.
Unlike some Alzheimer’s patients who ask the same question repeatedly, he states the same opinion over and over, unaware that he just said that for the hundredth time. He seems unaware of verbalizing almost constantly, chattering to the dog, singing, recalling long ago events, which he tells very well. His short-term memory is partially intact. He cannot remember appointments, but neither can I.
He considers it perfectly normal to be unable to tolerate a cup being removed from the counter, or to open a cabinet and find new, unfamiliar products. Everything must remain where he placed it, or he gets annoyed, even angry. New things seem to frighten him. His world is shrinking to what he can hang on to from the past. He clearly is unaware of this.
His taste in food has reverted to what he ate as a child. Only certain food combinations are tolerated, such as new potatoes with green beans. He will not eat green beans without the potatoes. And he specifically requests certain foods, which he never did before. He would eat what was served and enjoy it.
I’m sure there must be some battery of tests that could determine to what degree he is anosognosic, but I am just as sure he would never submit to them, nor would I want him to. The diagnostic process has been a nightmare for him, so much so that when I asked him to describe it he refused, loudly, emphasizing how sick he is of being sick.
There have been good days since his diagnosis, just not lately. Now I welcome peaceful moments, when we can both forget for a little while, and let things be as we thought they’d be when he retired.
Saturday, July 16, 2011
One thing leads to another...
"Circumstances are subject to change, at any minute, without notice." So said my father so often that we all thought he made it up. When I Google the phrase, all I get are terms and conditions for travel arrangements, so maybe he did make it up. But I hate it when it happens.
Today has been a doozy. The good news is that he loves the little dog and the cat that I brought home from the animal shelter; plus the orthopedist visit proved hopeful. The rotator cuff does not seem damaged beyond repair. (See the previous two posts) A high- powered steroid cocktail injection will tell the tale within the next three weeks. If the pain gets worse, an MRI will determine whether surgery is needed. The bad news is how he’s been acting. I’ve earned the t-shirt – the Brunt.
Is it "roid rage"? Who knows!
Pain? No doubt.
Oxycodone? Probably!
Am I sick of it? You bet.
But here’s the big change: he read the package inserts on Aricept and Namenda.
Wrong.
"These are for people who have Alzheimer’s," he said.
Like spiders, heat crawled up my neck as I realized he does not know.
"Do I have to take it even though I don’t have it?" he asked.
"The doctor said you have it."
"No, he did not! He said I have the gene and I might get it."
"Ninety-eight percent…the other two percent can’t be proven until autopsy."
There it is.
"So I’ve got Alzheimer’s."
I shook my head.
The next few moments were rough to watch and had to be worse for him, as he went straight for the worst-case scenario.
"No! No!" I argued back. "You could have years and years...good years"
"But it’s gonna get me."
"Well... eventually...but they might find a cure within the next two years!"
"Ain’t that some s...! What a way to have to live..."
"Believe me when I tell you I would feel the same way."
He walked out of the room and when he returned the pain in his face brought tears.
"You have to know how I have grieved about this, and made deals with God..."
He looked at me with knowing.
"...and I have vowed I will be here for you no matter what. That’s why you have got to stop trying to run me off!"
The look on his face convinced me I need say no more.
We spoke of how sick he’s felt since he fell, and how every day he feels sick is a day we can’t get back.
I wonder how long he could have gone without knowing if the bees hadn’t attacked him and caused the fall that injured his shoulder.
I could have sworn he knew. He's even joked about it. Oh, God, he really did not know until today.
Do we cry together?
Pretend?
What now?
Today has been a doozy. The good news is that he loves the little dog and the cat that I brought home from the animal shelter; plus the orthopedist visit proved hopeful. The rotator cuff does not seem damaged beyond repair. (See the previous two posts) A high- powered steroid cocktail injection will tell the tale within the next three weeks. If the pain gets worse, an MRI will determine whether surgery is needed. The bad news is how he’s been acting. I’ve earned the t-shirt – the Brunt.
Is it "roid rage"? Who knows!
Pain? No doubt.
Oxycodone? Probably!
Am I sick of it? You bet.
But here’s the big change: he read the package inserts on Aricept and Namenda.
Wrong.
"These are for people who have Alzheimer’s," he said.
Like spiders, heat crawled up my neck as I realized he does not know.
"Do I have to take it even though I don’t have it?" he asked.
"The doctor said you have it."
"No, he did not! He said I have the gene and I might get it."
"Ninety-eight percent…the other two percent can’t be proven until autopsy."
There it is.
"So I’ve got Alzheimer’s."
I shook my head.
The next few moments were rough to watch and had to be worse for him, as he went straight for the worst-case scenario.
"No! No!" I argued back. "You could have years and years...good years"
"But it’s gonna get me."
"Well... eventually...but they might find a cure within the next two years!"
"Ain’t that some s...! What a way to have to live..."
"Believe me when I tell you I would feel the same way."
He walked out of the room and when he returned the pain in his face brought tears.
"You have to know how I have grieved about this, and made deals with God..."
He looked at me with knowing.
"...and I have vowed I will be here for you no matter what. That’s why you have got to stop trying to run me off!"
The look on his face convinced me I need say no more.
We spoke of how sick he’s felt since he fell, and how every day he feels sick is a day we can’t get back.
I wonder how long he could have gone without knowing if the bees hadn’t attacked him and caused the fall that injured his shoulder.
I could have sworn he knew. He's even joked about it. Oh, God, he really did not know until today.
Do we cry together?
Pretend?
What now?
Subscribe to:
Posts (Atom)