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A Journey into forgetfulness

A Journey into forgetfulness

Have you ever had an experience where you knew …

The name of the person, it was on the tip of your tongue as they say, but ….it just eludes you, just stays slightly beyond your grasp.

Or you just had those car keys, sun glasses, …. but now what did you do with them? Where did you put them?

Now imagine …. that is your life. 24 hours a day, seven days a week, 52 weeks a year, that is your life.

You just can’t quite recall. It is something you should know but. …. It eludes you.

And day by day, week by week the things that slip just into the shadows of your mind where you can sort of glimpse them but can’t quite make out what they are grow and grow and slip further and farther away.


This is what this blog is about. A Journey into forgetfulness. With this blog I will discuss our own experiences with Alzheimer's disease in the hopes it will help others with family or friends with this illness

Tuesday, August 14, 2007

TV: They are watching me

My father has reached the stage of Alzheimer's where he has difficulty between reality and non-reality. Today he is convinced that the events on TV are real. I don't mean depicting something real. He is convinced the people (actors and actresses) are talking and looking at him personally. He does not understand that it is a broadcast or a recording. To him, it is as if those people are sitting in the room with him. It frightens him. Confuses him.

No longer is television an entertainment, a refuge. It is a frightening thing.

Monday, August 13, 2007

Coffee, Benefits and risks

I love coffee! The image above says it all.

These are just a few of the news articles on coffeee - 2 of the 3 in just the last couple of days.

Girl overdoes on espresso coffee

Is Coffee bad for you?

Coffee 'protects female memory'

It seems like I have been drinking coffee all of my life. My mother claims I started drinking it when I was just a few months old when she gave it to me mixed with milk in my bottle because I wanted what she was drinking. Today I prefer it strong and pure or black as some say. No sugar, no cream or milk or substitutes. While in Brasil, I shocked some people by preferring their strong rich brew without the traditional sugar and cream added. "puro, por favor!" Obrigado! I love it espresso strength. Now that doesn't mean I don't drink it otherways. I drink lattes, mochas, fraps, cafe au lait, etc. What I do not particularly like is "american coffee". Folgers or Maxwell House or some similar brand brewed so that one can see partially through the liquid. That is just colored warm water. I prefer it dark and rich. When I brew coffee, one can not see through it even a little. And one doesn't need an espresso machine to brew dark, rich, strong coffee. I start with high quality coffee (it doesn't have to be expensive - I found one at Wal-Mart at about $3 a lb that is excellent), I fill my filter full and then add 12 cups of cold water and let it brew. That is using a Krups drip coffee machine. As long as you have good coffee, it is great! Try that with folgers or maxwell house and you will have 1 bitter brew!

The first article linked above however highlights one of the risks of coffee. Maybe the only risk. Some people can not handle the caffeine. If 7 double espressos were too much for her system, she doesn't want to have mine. I drink my coffee by the "mug", at least 12 oz at a time and I can drink coffee anytime, 24/7. Caffeine has never adversely affected me. In fact I tried to use coffee from Puerto Rico (excellent coffee!) while in college to stay awake and study. It never worked. I could fall right to sleep studying Organic Chemistry with or without the coffee.

The other 2 articles highlights some of the benefits of coffee. I actually use to have a collection of articles similar to these (and probably still have the bookmarks) that show the benefits of drinking coffee. Warding off dementia is just one of them.

Just so you don't think I am prejudice against other hot drinks, I also love hot tea and Hot Chocolate. Unlike some other Coffee lovers, I do not despise tea. In fact, I love hot and cold tea especially hot green tea, herbal teas and oolong tea. I don't like English breakfast tea as well. And tea has been shown to be very good for you also with hot green tea probably drawing the most accolates as to health benefits. I am also a chocoholic and love hot cocoa as well. Chocolate (not the supper sugared versions but real dark chocolate) has also been shown to benefit ones' health.

But coffee is coffee. It has a special place. In November of 2000 I was fortunate to visit a friend in Slovakia. Before returning to the US, I stayed a couple of nights in Vienna, Austria. Coffee and chocolate on every corner! I highly recommend it to the coffee and chocolate lovers. If you don't like chocolate (how can you not?), you may want to consider a trip to Costa Rica. It isn't known for its chocolate but it has some of the best coffee grown anywhere. I can also recommend coffess from Brasil (there are a couple I really like) and elsewhere. Just avoid the coffees that are designed to be brewed weak if you want the real experience of rich, flavorful coffee.

PS: I just added the link to oolong tea, and I haven't even read it all myself. Discovered it as I searched "oolong" to make sure I spelled it correctly.

Originally posted on my primary blog Welcome to a New World

Friday, August 10, 2007

Blind in a foreign land

Have you ever wondered what it is like to be an alzheimer's victim?

Someone who is in the later stages of the disease?

Someone who can no longer do the everyday tasks that the rest of us take for granted.

who can no longer read a book and enjoy it

who can not work a puzzle of any kind

who can't play a game of any kind

who can not even do housework because they don't remember what to do, what anything is, where things are suppose to belong, how anything works, or how to do anything - even simple things like making toast.

Television? Can't remember what has happened or follow what is going on so watching it is nothing but confusion. What is going on? Who are they talking to? What are they wanting me to do?

It is like being in a foreign place where everyone talks a language you do not understand. Have you ever been in such a situation? I have. But I was lucky. I could see and be entertained just by watching what was happening around me. And I could learn. Slowly but I could learn. Bohm gee-ah meant "hello". brigado or brigada meant "thank you". Men said one and women said another.

But how would I have felt if I couldn't understand anything, and I couldn't see what was happening? Can you imagine that situation? And to make matters worse, no matter how hard you try, you just can't remember well enough to learn any of the language? How would that feel?

That is how I envision it to be for those with alzheimer's. How are they suppose to fill the 24 hours in a day? Not understanding. Not remembering. Unable to do. I can just sense the frustration. Nothing to do. Wanting to do something, anything, but it has no meaning. Can't remember how to do it or remember that I did it. An endless cycle of nothingness. Just being.

Not understanding anyone, and nobody understanding me. Blind in a foreign land.

Saturday, August 4, 2007

Playing Majhong causes Epilepsy


It's one of those games I have heard of a lot, been intrigued by the name and had intentions to check out sometime when I had time, but never have -- at least not yet.

As I understand it this is a very popular game in China. From its description, it could help avert Alzheimer's since it requires a lot of cognitive skills. But it seems it may also induce some kind of epileptic seizures.

When I first decided to post this news story here, I was thinking there would be no link to Alzheimer's at all in what I wrote. I was just going to post an interesting news story connecting the popular tile game to epilepsy. But as I typed I realized there was a connection.

Studies have indicated that people who maintain a lifestyle that involves active use of the brain are much less likely to develop Alzheimer's. So people who read a lot, do crossword puzzles or jigsaw puzzles, etc -- actiities that involve actively using the brain -- are much less likely to develop Alzheimer's. That means that I am not a good candidate to be an Alzheimer's victim even though my father suffers from it because I read a lot!

If you have a family member or friend with early stage Alzheimer's and you can get them to pursue activities that involve cognitive skills perhaps it will help slow the progress. I am no doctor and I am not aware of any studies to support this for those already with Alzheimer's. It is just a thought and may not be a practical one.

I do know that when we took my father on a trip to the western US last year, the first few days he was more or less in the same condition as we left. But later in the trip (it lasted 10 days) he was more mentally alert than normal. It seemed the constant barrage of new information stimulated his brain. He was better for a short time after we returned home than he was before we made the trip. That is simply my observation.

So to avoid Alzheimer's (to reduce the risk), try activities that stimulate the mind. Doctors talk about doing aerobic exercise to reduce your risk of heart disease, do mental exercise to reduce risk of Alzheimer's. Read books, do Sudoku puzzles, do anything except sit at home and watch TV. Stimulate that mind.

And check out Majhong if you care but be aware that overdoing it could inadvertently trigger epilepsy.


One of the problems my father has now is going to sleep. This is especially true on the nights my mother works (she works some nights). As soon as she leaves for work, he begins to say it is time for bed. For some reason once she is no longer here, it is bed time. Normally I try to keep him up until about 10 pm hoping that he will sleep thru the night once he finally goes to sleep. That is the crux. He won't stay in bed and go to sleep.

Although he will continually try to go to bed for hours, once you tell him - "OK, go to bed" he will begin to worry about everything, and he won't go to sleep. Every few minutes he will be out of bed and asking:

Who is going to wake me up in the morning?

When am I leaving here?

Who is going to come get me?

What am I going to do for breakfast?

I don't have any money, how am I going to pay to stay here? or to eat here? (He doesn't think this is his home).

Where is my wife?

She is coming here? Will I get to see her? Will I be able to talk to her?

What if the people who live here show up?

Am I allowed to sleep in this bed (his own)? I don't have any money to pay for it.

What about all of those people (points to television). Are they staying here also?

I hate to bother you but there is a fire in here.

This last one bothered me a great deal the first time he came and told me. I went to investigate and the fire was the light on in the bathroom so he could see if he needed to go in the middle of the night. Now I know anything that has a light that shines in the dark - computer tower, night lights, VCR light, clock, power strip, anything at all, may be the source of the "Fire" in his mind.

You must still take it seriously. You never know when there may actually be a fire. And unlike the Story about the boy who cried wolf, you can not ever assume it is NOT a fire. So check it out and try to reassure them all is ok. You may even have to turn off (or power down) appliances as inconvenient as that may be so their little led lights don't shine.

So be prepared for questions, be prepared for long nights with little sleep, be prepared for that insecurity to arise. They don't remember so it is frightening to them. Not knowing. Never knowing. always in the dark

Friday, August 3, 2007

Habanero and Alzheimer's

Habanero chiles and Alzheimer's do not mix well.

My father who is in the advanced stages of Alzheimer's apparently decided to eat one of my habanero peppers yesterday. It is a reminder for those who are caring for someone with Alzheimer's just how much like small children they can be.

In the early stages of Alzheimer's one does not need to be on constant alert. The only problem at this stage is that the Alzheimer's victim will forget things that just happened -- short term memory is impaired.

As the Alzheimer's progresses it will manifest itself in not only the short term memory impairment being more pronounced but long term memory also will begin to fail. In addition cognitive functions are impaired. The ability to make decisions disappears. It slips into the shadows. Making a choice can become impossible. What do you want to eat? may become a question they can not answer. For one thing, they may not remember what the food they want to eat is named. For another they may not remember what it tastes like. Or they may simply may not be able to make even such a simple decision. You want to wear this or that? is a question that can overwhelm them.

But along with this cognitive impairment is the fact they will do things they shouldn't. Like grab an habanero and try to eat it. We raise a small garden in the summer, and I raise some habanero chiles. Yesterday we were outside mowing grass, weed-eating, picking up limbs, trimming hedges and such and my father returned to the house. When my mother came inside she found him at the kitchen sink spitting and eyes watering. He had taken one of my habanero peppers, sliced off a piece and taken a bite.

Just as parents "child proof" their homes when they have young children (especially toddlers), when you have a family member with Alzheimer's you once again have to look at your home with new eyes. What can they get into that will harm them? And place it away so they can not hurt themselves. We have done that for the most part. Just didn't think of the habaneros.