I spent thousands and thousands of hours thinking about Alzheimer's -- so far. I lived Alzheimer's from the front row for more than 53,000 hours.....
By Bob DeMarco
It is now more than six years since I started taking care of my mother, Dorothy, who suffers from Alzheimer's disease.
During this time, I read extensively about Alzheimer's. Most of the books and thousands of articles on Alzheimer's disease. This is my 1,020th article about Alzheimer's disease.
There are about 4,500 links to articles about Alzheimer's disease, caregiving, and dementia on my Twitter feed this year (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.
Last year, 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.
My mother took about $5594 worth of medication this 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 couple of 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.
Less than you might think.. We would have gone right into and through the Medicare donut hole. So somewhere around $4350 out of our pocket.
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 53,000 hours. Go here to get some of my advice and insights.
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.
No one has ever asked me, what is Alzheimer's? If they did, I would say certain brain death. I suppose their nonverbal reaction would be interesting to see. The look on their face.
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. This is a good explanation of Alzheimer's.
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 half of the people that are 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 to 50 percent. 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.
My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 93 years old, suffers from Alzheimer's disease. We live our life one day at a time.
To be continued....
Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,050 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.
The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems