So much of what is best in us is bound up in our love of family, that it remains the measure of our stability because it measures our sense of loyalty.
Haniel Long
Monday, January 31, 2011
Sunday, January 30, 2011
Saturday, January 29, 2011
Dad's memories of Mom....
..... are gone. We've seen them leave over the past few years. At first, when shown her picture, he would quickly say "Ah! A very fine lady!" and remember her name. He'd know that she was away somewhere, and during the first year with us, knew that she had died. In the next few years, I'd remind him, and when shown a photo, he would stammer, hem and haw, and finally come up with the memory. Then he thought she was his sister. Today, when asked about the photo of Mom in Monterey, looking at a flower on the beach, he said "That's one of those ladies who lives in that land".
Once, when out shopping with me, he lost track of me (I didn't lose track of him, though, I was close by and watching him, but he just decided that he was lost). He asked a lady nearby him "Have you seen my wife?" and she tried to look around and be helpful, so I quickly came up to them and he brightened up and said "Ah! There you are!" and the poor lady looked stricken, like she was trying to figure out why such an old dude would have such a younger wife. Ha!
He is very family oriented. He does not know his childrens' names, but when shown a photo of them, he recognizes that they are family, and will say "This is my sister, that is my brother...."
About that photo of Mom: it is lovely. Who wants it?
A great essay in NY Times about what it's like
When All Isn’t Enough to Foil Alzheimer’s
By NANCY STEARNS BERCAW Jan 17 2011
My father knew it was coming.
Alzheimer’s disease had been on his radar ever since his own father died of it. Witnessing the catastrophic deterioration of a man who had been sharp enough to work for Gen. Douglas MacArthur, my frightened father was inspired to become a neurologist. Perhaps the pursuit of medicine could stave off what he believed was a genetic inevitability.
As an ever-present reminder of that threat, he kept an atrophied brain in a jar on his desk. That brain, I recently discovered, belonged to his father.
As my father approached middle age he began to experiment on himself, with diet supplements. By age 60 he was taking 78 tablets a day. He tracked down anything that offered the possibility of saving brain cells and killing free radicals: Omega 3s, 6s, 9s; vitamins E and C; ginkgo biloba, rosemary and sage; folic acid; flaxseed.
After retiring from his neurology practice in Naples, Fla., he spent hours a day doing math. Even when I was visiting, he’d sit silently on his leather recliner with a calculator to verify the accuracy of calculations he did by memory.
“What are you saving your mind for, Dad?” I often wondered to myself. “I’m here now, waiting to talk with you.”
On one of these occasions, he suddenly looked up from his Sudoku game and stared at me.
“Promise me something, gal,” he said. “Anything,” I answered.
“Swear on your grandmother’s Bible that you will put a gun to my head if I wind up like my father.”
He was dead serious.
How do you answer a man who watched his father wipe feces on the walls of their Virginia farmhouse? A man who took out a second mortgage to buy the first CT scanner in Florida?
“Swear to me,” he repeated. He collected guns and kept them under lock and key. He knew I could shoot them, because he’d taught me how. I put my hand on the leather-bound King James Bible that had belonged to my great-grandmother Nannie Dunlap and my grandmother Nancy Scott.
“I swear,” I said.
He nodded in approval.
A few years later, my father arrived at my home in Vermont with a suitcase full of supplements. He parceled out his pills for the week into Dixie cups, ready for swallowing with every meal.
“Gal, you should be taking these, too.”
“Why?”
“Because you are my genetic clone.”
Our physical resemblance and character traits were uncanny: tall, big-lipped, blue-eyed, loose-jointed, freckle-skinned, angst-ridden Bercaws. Except for our male and female chromosomes, nearly everything about us was a perfect match.
My father went on to explain that everyone inherits one copy of the APOE gene from each parent. The gene can indicate a predisposing genetic risk for Alzheimer’s. APOE-2 is relatively rare and may even provide some protection against the disease. APOE-3 is the most common and appears to have a neutral role. APOE-4 indicates the highest risk factor.
“I’m only 34! Can’t I think about this later?”
He shook his head.
Back in Florida, he sent me a genetic test kit via Federal Express, instructing me to have the blood drawn at my physician’s office but to have the results sent to him. It turned out that like my father I carry the APOE-3 gene, which means I may or may not get the disease.
But unlike my father, I will have to wait to find out. In 2009, at age 71, he had an M.R.I. that showed “atrophy consistent” with Alzheimer’s disease. He looked at the film and was confused by the sight of his own brain.
I recently spent time with my father while his wife had surgery. I took him to visit her at the hospital each day, and when we got home I stopped him from calling her every five minutes. I gave him dinner and pills at the appointed hours. I cleaned up his “accidents.”
While he watched a televised baseball game one afternoon, I walked into his den and eyed the wall of supplements he used to take — bookcase after bookcase of pills with names like Memoral and Sharp Mind. Won’t be needing them anymore.
I rested my hand on his gun cabinet. Won’t need you, either.
My father walked to the coffee shop with me every morning. The only thing he’d say on these walks was, “The hibisci are in full bloom.” Every time he said it — which was dozens — I wondered whether the plural of hibiscus is, in fact, hibisci.
On the final morning of my visit, he didn’t mention the blooms. But when we passed a particularly flourishing tree, he stopped to look at me.
“Gal,” he said, then paused to find the words.
His voice quivered. “I sure appreciate you coming down to take care of me.”
I composed myself long enough to say: “It was a pleasure, especially after all you have done for me. Besides, you don’t need so much taking care of.”
As we walked on, my father would repeat this latest sentence every few minutes — the same quiver in his voice at the exact same place.
Each time, my response got shorter and shorter, until I was the one who had nothing left to say.
About Alzheimer's disease
Alzheimer's - it's a hard word to type fast, so I'll use Alz
I sent each of my USA siblings a book about Alz back in 2004. No one ever mentioned receiving it, except for Jennie who said she would not open it, so I assume no one read it. Too bad, because it's important to understand how it has affected Dad and his family. There is a very strong family history - his mother and sisters Jane and Mary died from it. Tess most likely has it and is no longer able to live alone. Ed has memory problems, but that may just be being 88. Quite likely, everyone in his family has developed it to some extent. That means his children are at increased risk.
Here is a good summary from the health section of the New York Times. Gpa has all of the late-stage manifestations. He takes the medications indicated.
(Vince and I have been very diligent with his health care ever since his arrival. He takes Aricept, at the newly approved increased dosage, Namenda, and vitamins. His macular degeneration, diagnosed in 2006, is stable. He had foot surgery last year for bone spurs. I keep him up to date with vaccines. His stiff bladder has led to incontinence so he is now in adult diapers).
I sent each of my USA siblings a book about Alz back in 2004. No one ever mentioned receiving it, except for Jennie who said she would not open it, so I assume no one read it. Too bad, because it's important to understand how it has affected Dad and his family. There is a very strong family history - his mother and sisters Jane and Mary died from it. Tess most likely has it and is no longer able to live alone. Ed has memory problems, but that may just be being 88. Quite likely, everyone in his family has developed it to some extent. That means his children are at increased risk.
Here is a good summary from the health section of the New York Times. Gpa has all of the late-stage manifestations. He takes the medications indicated.
(Vince and I have been very diligent with his health care ever since his arrival. He takes Aricept, at the newly approved increased dosage, Namenda, and vitamins. His macular degeneration, diagnosed in 2006, is stable. He had foot surgery last year for bone spurs. I keep him up to date with vaccines. His stiff bladder has led to incontinence so he is now in adult diapers).
Age and family history are risk factors for AD.
- As you get older, your risk of developing AD goes up. However, developing Alzheimer's disease is not a part of normal aging.
- Having a close blood relative, such as a brother, sister, or parent who developed AD increases your risk.
- Having certain combination of genes for proteins that appear to be abnormal in Alzheimer's disease also increases your risk.
Other risk factors that are not as well proven include:
- Longstanding high blood pressure
- History of head trauma
- Female gender
There are two types of AD -- early onset and late onset.
- In early onset AD, symptoms first appear before age 60. Early onset AD is much less common than late onset. However, it tends to progress rapidly. Early onset disease can run in families. Several genes have been identified.
- Late onset AD, the most common form of the disease, develops in people age 60 and older. Late onset AD may run in some families, but the role of genes is less clear.
The cause of AD is not entirely known, but is thought to include both genetic and environmental factors. A diagnosis of AD is made when certain symptoms are present, and by making sure other causes of dementia are not present.
The only way to know for certain that someone has AD is to examine a sample of their brain tissue after death. The following changes are more common in the brain tissue of people with AD:
- "Neurofibrillary tangles" (twisted fragments of protein within nerve cells that clog up the cell)
- "Neuritic plaques" (abnormal clusters of dead and dying nerve cells, other brain cells, and protein)
- "Senile plaques" (areas where products of dying nerve cells have accumulated around protein).
When nerve cells (neurons) are destroyed, there is a decrease in the chemicals that help nerve cells send messages to one another (called neurotransmitters). As a result, areas of the brain that normally work together become disconnected.
The buildup of aluminum, lead, mercury, and other substances in the brain is no longer believed to be a cause of AD.
Dementia symptoms include difficulty with many areas of mental function, including:
- Language
- Memory
- Perception
- Emotional behavior or personality
- Cognitive skills (such as calculation, abstract thinking, or judgment)
Dementia usually first appears as forgetfulness.
Mild cognitive impairment is the stage between normal forgetfulness due to aging, and the development of AD. People with MCI have mild problems with thinking and memory that do not interfere with everyday activities. They are often aware of the forgetfulness. Not everyone with MCI develops AD.
Symptoms of MCI include:
- Forgetting recent events or conversations
- Difficulty performing more than one task at a time
- Difficulty solving problems
- Taking longer to perform more difficult activities
The early symptoms of AD can include:
- Language problems, such as trouble finding the name of familiar objects
- Misplacing items
- Getting lost on familiar routes
- Personality changes and loss of social skills
- Losing interest in things previously enjoyed, flat mood
- Difficulty performing tasks that take some thought, but used to come easily, such as balancing a checkbook, playing complex games (such as bridge), and learning new information or routines
As the AD becomes worse, symptoms are more obvious and interfere with your ability to take care of yourself. Symptoms can include:
- Forgetting details about current events
- Forgetting events in your own life history, losing awareness of who you are
- Change in sleep patterns, often waking up at night
- Difficulty reading or writing
- Poor judgment and loss of ability to recognize danger
- Using the wrong word, mispronouncing words, speaking in confusing sentences
- Withdrawing from social contact
- Having hallucinations, arguments, striking out, and violent behavior
- Having delusions, depression, agitation
- Difficulty doing basic tasks, such as preparing meals, choosing proper clothing, and driving
People with severe AD can no longer:
- Understand language
- Recognize family members
- Perform basic activities of daily living, such as eating, dressing, and bathing
Other symptoms that may occur with AD:
- Incontinence
- Swallowing problems
AD can often be diagnosed through a history and physical exam by a skilled doctor or nurse. A health care provider will take a history, do a physical exam (including a neurological exam), and perform a mental status examination.
Tests may be ordered to help determine whether other medical problems could be causing dementia or making it worse. These conditions include:
- Thyroid disease
- Vitamin deficiency
- Brain tumor
- Stroke
- Intoxication from medication
- Chronic infection
- Anemia
- Severe depression
Computed tomography (CT) or magnetic resonance imaging (MRI) of the brain may be done to look for other causes of dementia, such as a brain tumor or stroke.
- In the early stages of dementia, brain image scans may be normal. In later stages, an MRI may show a decrease in the size of different areas of the brain.
- While the scans do not confirm the diagnosis of AD, they do exclude other causes of dementia (such as stroke and tumor).
Unfortunately, there is no cure for AD. The goals in treating AD are to:
- Slow the progression of the disease (although this is difficult to do)
- Manage behavior problems, confusion, sleep problems, and agitation
- Modify the home environment
- Support family members and other caregivers
DRUG TREATMENT
Most drugs used to treat Alzheimer's are aimed at slowing the rate at which symptoms become worse. The benefit from these drugs is often small, and patients and their families may not always notice much of a change.
Patients and caregivers should ask their doctors the following questions about whether and when to use these drugs:
- What are the potential side effects of the medicine and are they worth the risk, given that there will likely be only a small change in behavior or function?
- When is the best time, if any, to use these drugs in the course of Alzheimer's disease?
Two types of medicine are available:
- Donepezil (Aricept), rivastigmine (Exelon), and galantamine (Razadyne, formerly called Reminyl) affect the level of a chemical in the brain called acetylcholine. Side effects include indigestion, diarrhea, loss of appetite, nausea, vomiting, muscle cramps, and fatigue.
- Memantine (Namenda) is another type of drug approved for treating AD. Possible side effects include agitation or anxiety.
Other medicines may be needed to control aggressive, agitated, or dangerous behaviors. These are usually given in very low doses.
It may be necessary to stop any medications that make confusion worse. Such medicines may include painkillers, cimetidine, central nervous system depressants, antihistamines, sleeping pills, and others. Never change or stop taking any medicines without first talking to your doctor.
How quickly AD gets worse is different for each person. If AD develops quickly, it is more likely to worsen quickly.
Patients with AD often die earlier than normal, although a patient may live anywhere from 3 - 20 years after diagnosis.
The final phase of the disease may last from a few months to several years. During that time, the patient becomes immobile and totally disabled.
Death usually occurs from an infection or a failure of other body systems.
- Loss of ability to function or care for self
- Bedsores, muscle contractures (loss of ability to move joints because of loss of muscle function), infection (particularly urinary tract infections and pneumonia), and other complications related to immobility during end stages of AD
- Falls and broken bones
- Loss of ability to interact
- Malnutrition and dehydration
- Failure of body systems
- Harmful or violent behavior toward self or others
- Abuse by an over-stressed caregiver
Prevention
Although there is no proven way to prevent AD, there are some practices that may be worth incorporating into your daily routine, particularly if you have a family history of dementia. Talk to your doctor about any of these approaches, especially those that involve taking a medication or supplement.
- Consume a low-fat diet.
- Eat cold-water fish (like tuna, salmon, and mackerel) rich in omega-3 fatty acids, at least 2 to 3 times per week.
- Reduce your intake of linoleic acid found in margarine, butter, and dairy products.
- Increase antioxidants like carotenoids, vitamin E, and vitamin C by eating plenty of darkly colored fruits and vegetables.
- Maintain a normal blood pressure.
- Stay mentally and socially active throughout your life.
- Consider taking nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen (Advil, Motrin), sulindac (Clinoril), or indomethacin (Indocin). Statin drugs, a class of medications normally used for high cholesterol, may help lower your risk of AD. Talk to your doctor about the pros and cons of using these medications for prevention.
Alzheimer's from an artist's experience
Read this article about this artist's (William Utermohlen) incredible self-portraits which give such a powerful insight into what it is like to lose one's skill, identity, and understanding of the world though Alzheimer's.
http://www.msnbc.msn.com/id/11752410/ns/health-alzheimers_disease/
some saved texts
We text each other the interesting things that Grandpa says or does.
For a few days last December, Vince and I shared some quality couple time in Maui in celebration of our 25th wedding anniversary. While walking on the beach we got this funny text from Isaac, who was watching over him for us: "Grandpa is wearing socks on his hands". Dec 15
In October Grandpa started going to an ElderCare program three days a week. He is picked up by bus at our front door at around 830, stays for the morning, has lunch, and returns around 1:30. The bus picks up other attendees, so it is a nice long drive around pleasant neighborhoods, one of Gpa's favorite things to do (drive around and look at traffic and trees). He never remembers what he did at Eldercare, and denies that they fed him, so Vince has a second lunch ready for him. Upon his return from the program on Oct 8th, Vince asked him "Did you do anything memorable today?"
To which Gpa replied: "Not that I can remember".
For a few days last December, Vince and I shared some quality couple time in Maui in celebration of our 25th wedding anniversary. While walking on the beach we got this funny text from Isaac, who was watching over him for us: "Grandpa is wearing socks on his hands". Dec 15
In October Grandpa started going to an ElderCare program three days a week. He is picked up by bus at our front door at around 830, stays for the morning, has lunch, and returns around 1:30. The bus picks up other attendees, so it is a nice long drive around pleasant neighborhoods, one of Gpa's favorite things to do (drive around and look at traffic and trees). He never remembers what he did at Eldercare, and denies that they fed him, so Vince has a second lunch ready for him. Upon his return from the program on Oct 8th, Vince asked him "Did you do anything memorable today?"
To which Gpa replied: "Not that I can remember".
coming home from shopping trip Sat eve Jan 29
Vince is with the boys at their concert tonight (they are so excited to have been invited to be part of an arts festival in Redmond) and it will be loud so I kept Grandpa home and took him shopping for entertainment.
When we returned home and parked in the driveway he said "Will we be staying here long?"
"Grandpa, we live here."
"Oh? Very good! I was hoping so!"
I settled him into the big easy chair that I bought for him a few Father's Days ago, and set out dinner for him. He had watched "Fiddler on the Roof" video earlier on the day, and asked to watch it again. As I turned it on, I reminded him that he's watched it earlier and he said "Oh? Did I like it?"
When we returned home and parked in the driveway he said "Will we be staying here long?"
"Grandpa, we live here."
"Oh? Very good! I was hoping so!"
I settled him into the big easy chair that I bought for him a few Father's Days ago, and set out dinner for him. He had watched "Fiddler on the Roof" video earlier on the day, and asked to watch it again. As I turned it on, I reminded him that he's watched it earlier and he said "Oh? Did I like it?"
Welcome
Grandpa Ralph says so many interesting things, I thought I would record them here. It will take some time to gather all the little bits of paper that I've written them down on, plus the texts from Vince in my phone, so they won't be in any order.
I did the same writing down of funny things when my boys were little - only no texts back then - and they are our most precious treasure, along with their photos.
Grandpa Ralph moved in with us in May 2006, shortly after Mom died. When he moved in, Vince carried the 'Dad' title, and three members of the household used it (my three sons), so Dad instantly became Grandpa, so that the boys would not be confused about whom I was talking when I used the word 'Dad'.
I've never been able to call my parents by their first names, and especially can't use the nickname by which my Dad introduces himself! "Hi, I'm Dick". nope, can't do that!
I did the same writing down of funny things when my boys were little - only no texts back then - and they are our most precious treasure, along with their photos.
Grandpa Ralph moved in with us in May 2006, shortly after Mom died. When he moved in, Vince carried the 'Dad' title, and three members of the household used it (my three sons), so Dad instantly became Grandpa, so that the boys would not be confused about whom I was talking when I used the word 'Dad'.
I've never been able to call my parents by their first names, and especially can't use the nickname by which my Dad introduces himself! "Hi, I'm Dick". nope, can't do that!
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