I spent thousands and thousands of hours thinking about Alzheimer's -- so far. I lived Alzheimer's from the front for more than six years.....By Bob DeMarco
Alzheimer's Reading Room
During this time, I read extensively about Alzheimer's. Most of the books and thousands of articles on Alzheimer's disease. There are now more then 2,200 articles about Alzheimer's disease and care giving on this website. You can use the search box on the right to find articles of interest on this website.
There are bout 12,000 links to articles about Alzheimer's disease, caregiving, and dementia on my Twitter feed -- @ALZHEIMERSread.
Over the years, in order to keep track of all my mother's doctor and specialists visits, the medications, and tests, I needed a thick three ring binder. You are always in need of past information when caring for someone suffering from Alzheimer's.
One doctor said to me, I see your mother had a scan on her knee during September, 2007. What is the problem with her knee?
I said no way, let me look. I said she had a CTscan of her neck during Septmeber, 2007. He said no, look, here is the report. This is when I learned that the wrong test was ordered when my mother was suffering from massive headaches.
No wonder it took five weeks to come up with a medical solution. By the way, our doctor was on vacation, and it was the fill in doctor that wrote the wrong instruction and ordered the wrong test.
This explains why I didn't have a copy of the test in the binder. If I had gotten the copy of that test which is my usual practice, I would have noticed the mistake at the time. All I had was the note about the test in the journal section.
We didn't visit that doctor again.
During 2009,, my mother visited a doctor 27 times. We had 17 tests. We are probably high on the doctor visits, and low on the tests. If you get Alzheimer's I hope you know someone that can take you to the doctor. The way 2010 is going we will beat the 2009 numbers handily. We are not quite to the half way point and we have 17 doctors visits and counting.
My mother took about $5594 worth of medication last year. That is the street value. We didn't pay that much. Medicare paid for some of it, the doctor gave us some samples, and we paid for the rest.
Here is something that is interesting.
Simvastatin (Zocor) now costs $6.96 a month. A few years ago it cost about $120 a month. Amlodipine (Norvasc) now costs $9.53 a month. A couple of years ago it was also about $120 a month. Both drugs are now available as generics.
Imagine what we would have paid if that had not happened.
We would have gone right into and through the Medicare donut hole. So somewhere around $4350 out of our pocket (numbers for 2009).
Alzheimer's is an expensive disease.
When my mother and father retired the monthly maintenance payment on their condominium was $38 a month. Same condo, $297 a month now. I just threw that in for some perspective.
If you live a long time the cost of living goes up. It gets expensive. My mother was taking two generic drugs eight years ago at the age of 85. Blood pressure and cholesterol.
The other day I reminisced about how the cost of a coke was a dime when I was a kid. Costs more now, and I am not even on Medicare. By the time I am 93 it should be at least 5 bucks. That is for the 12 ounce version.
If the condo fee goes up the same way it did the last thirty years it would be around $2300 a month. That number does not include real estate taxes, insurance and up keep.
I spent thousands and thousands of hours thinking about Alzheimer's -- so far. I lived Alzheimer's from the front row for more than 56,000 hours. Go here to get some of my advice and insights.
I am a baby boomer so I think about what Alzheimer's could do to my generation. Current statistics indicate that ten million baby boomer's are likely to suffer from Alzheimer's disease in the future. Of course, a cure or preventative treatment might change these numbers. Might.
Unless you live in the front row of Alzheimer's you can never envision what it is like.
If you live in the front row, it is difficult to communicate the horror. How do you explain that you are watching a persons brain die? Ever tried it.
What is Alzheimer's disease? Certain brain death. Sounds harsh doesn't it? Brain dies and you forget how to do simple things like brush your teeth, take a poop. How many people think about that when they think about Alzheimer's disease?
If you have a heart attack and they get you to the hospital in time, it is likely that you will be able to resume a normal life. If you get a heart bypass and it goes well, it is likely you will be able to resume a normal life. Fall and break your hip, same story. I could go on and on.
When your brain dies all your parts might be fully functioning. Well not exactly. They might be in good shape, but if your brain can't tell them what to do they won't work.
If you are lucky you can get a heart transplant, or a liver transplant, or a prosthesis. You can't get a new brain, not yet anyway.
I wonder how many baby boomers think about life, living life, without a working brain. With a dying brain.
I would ask all ten million if I could, but its going to take a while before I know who they are. Or will I know?
Maybe somebody will ask me about my mother's life and what is going to happen. No one asked yet, but if they did.
My mother is living with a death sentence--certain brain death.
A slow but steady fade into the darkness. A state of confusion that worsens each and every day. A horrific experience. Soon she won't be able to brush her teeth, take a shower, or eat on her own.
Meanwhile, everything but her brain is functioning normally.
Someday she won't recognize me, or anyone.
That is her fate. And right now, the fate of almost half the people that were unfortunate enough to live past the age of 85.
What is it like being an Alzheimer's caregiver?
The caregiver lives life on a roller coaster of emotion. Imagine being happy and then sad, caring then angry, focused then frustrated, an almost endless stream of feelings and emotions that conflict. The caregiver lives an anxiety filled life day-after-day.
Try to imagine living your life in a state of constant uncertainty -- it is gut wrenching.
The caregiver watches as their loved one takes on erratic behaviors that are hard to deal with and hard to comprehend.
Less well known is that a large fraction, as high as forty percent, of Alzheimer's caregivers end up suffering from depression.
The caregiver nevers knows when this craziness might come to an end.
Alzheimer's is an illness that breeds illness.
The actual experience and feeling of helplessness cannot be described. Knowing that the day is coming when they -- won't know you -- is the most horrific feeling of them all.
A 65 year old baby boomer will have a one in six chance of suffering from Alzheimer's. Like the odds? Look around.
The odds increase each year until age 85 when it rises about 42 percent. Almost one out of every two baby boomer's age 85 or older can expect to suffer from Alzheimer's disease. Many of their children can expect to suffer right along with them as caregivers. You might want to get on good terms with your kids while you can.
The oldest of the baby boomer's is 63 right now. The Alzheimer's tsunami is right around the corner. If you do the math it is easy to see that a large fraction of our population is going to be touched by Alzheimer's soon.
A recent Harris Interactive poll showed that 100 million American's have been touched by Alzheimer's. About 35 million are worried about Alzheimer's. What are the other 65 million waiting for -- a cure?
Unlike other terminal diseases that present and worsen rapidly, Alzheimer's is a sinister disease--it usually develops very slowly over a long period of time.
You might be suffering from a very early stage of mild cognitive impairment right now and you might go undiagnosed for years. Mild cognitive impairment is often a precurser to Alzheimer's disease.
Few people know this, a person suffering from an early stage of Alzheimer's can function normally for years. My mother drove her car, shopped for groceries, played bingo and interacted with her friends. When her behavior started to change her friends all said the same thing--she's getting old. After all, she was living on her own, feeding herself, and was apparently self sufficient.
The fact that she stopped calling them, started to complain all the time about money, stopped going to the pool, and dragged her feet when she walked didn't raise a red flag. She was getting old. So they thought.
Can Baby Boomers Dodge the Alzheimer's Bullet?
This might be controversial but it is my belief that you can do something. By taking control you might be able to stave off Alzheimer's or at the minimum stave it off for years.
This might sound both harsh and crazy, but, by taking good care of your brain you might delay the onset of Alzheimer's disease. You might die, or they might find a treatment before it is too late for you.
I guess you need to know me to read this without cringing. I already mentioned, I have been thinking about this for years.
If you are getting worried go here.
- Test Your Memory for Alzheimer's (5 Best Self Assessment Tests)
- Communicating in Alzheimer's World
- Worried About Alzheimer's Disease -- You Should Be
- Alzheimer's Disease Statistics
- Is it Really Alzheimer's or Something Else?
- Ten Symptoms of Early Stage Alzheimer's
- Ten Tips for Communicating with an Alzheimer’s Patient
Original content Bob DeMarco, the Alzheimer's Reading Room