The Alzheimer's Hamster Within YOU

One of the most difficult tasks an Alzheimer's caregiver faces is the development of a new set of communications skills. Sooner or later the caregiver needs to come to an understanding that the way they have communicated in the past, before Alzheimer's, won't work in a world filled with Alzheimer's disease.

By Bob DeMarco 
Alzheimer's Reading Room

Change is difficult under any circumstance. It is even harder when you need to change something that you have been doing all day long throughout your life.

Every Alzheimer's caregiver I ever met has talked about their need to vent. Venting is a good thing. You get the monkey off your back. However, at some point you need to make a decision to put that monkey in the closet and get off the hamster wheel.

If you have gone years complaining about the same behavior over and over you must ask yourself, how do I change this dynamic?


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How to Listen to Alzheimer's

Two of the biggest problems Alzheimer's and Dementia caregivers face is how to cope and communicate with someone living with Alzheimer's.

By Bob DeMarco
Alzheimer's Reading Room 

Let's face it, Alzheimer's patients often say things that seem nonsensical to us; or, say things that leave us exasperated, confused, frustrated, and sometimes angry.

The words they say often cause us to react negatively.

The issue: are you really listening to the person living with dementia? Or, are you immediately reacting, or overreacting to their words?

Once I took the giant step to the left and entered Alzheimer's World the words my mother was saying took on a new and entirely different meaning for me.

I actually started listening to her instead of over reacting.


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Ten Tips for Communicating with an Alzheimer’s Patient

Do not argue with them. It gets you nowhere......

By Carole Larkin
Alzheimer's Reading Room

Ever feel like your loved one is ignoring you or that you just weren’t getting through to your loved one? Try some of these tips to see if they help.

Tips for communicating with a mid-stage (or later) Alzheimer’s patient.

Alzheimer's Caregiver Love

"The ordinary arts we practice every day at home are of more importance to the soul than their simplicity might suggest." -- Thomas Moore.....

I am receiving more and more email. Over the years, I talk to more and more caregivers.

Most of the interactions have to do with common problems experienced by caregivers. Also, potential solutions to the problems.

Caregivers often lament. Whether they know it or not, its grief. Often an overwhelming sense of grief that is coming to the surface. Often a subliminal cry for help.

Rarely discussed is the most important interaction of them all -- Alzheimer's caregiver love.

Lost in this maze of emotions and confusion is love.

I wonder how much time caregivers spend thinking about how they are affecting the well being of the person suffering from Alzheimer's?

Why are they caring?

What is the effect of the caring?

How close are the Alzheimer's patient and the Alzheimer's caregiver?

How close were they before Alzheimer's struck?

Did the feelings between them change over time?

How close are they years after the onset of Alzheimer's?

If you were scared, fearful, confused and someone provided you with a safe secure environment -- how would you feel? What would you feel?

Love.

There is no substitute for a safe, secure, environment at home. Think about that.

There is no substitute for the love of an Alzheimer's caregiver. If you doubted this in the past, stop doubting.

Take a moment and take a few deep breaths. Think about love. Allow yourself to feel.

I can say this with confidence, I admire each and every Alzheimer's caregiver. The more I learn the stronger my belief in them.

"Since love grows within you, so beauty grows. For love is the beauty of the soul." -- Saint Augustine

Related Articles:
Communicating in Alzheimer's World
Alzheimer's World -- Two Circles Trying to Intersect

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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“You will never do anything in this world without courage. It is the greatest quality of the mind next to honor.” --Aristotle.....

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Sometimes while looking at all those stars I begin to look at the space between the stars -- I call this the Blue Nowhere...When I look at the Blue Nowhere, I begin to imagine all the persons suffering from Alzheimer's disease. The Blue Nowhere is very vast.

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Is Alzheimer's Everywhere?

My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 93 years old, suffers from Alzheimer's.

Is Alzheimer's everywhere?

I don't get out much these days. But, I make an effort to take my mother out every Friday night. We always go to a place where we can easily interact with people. This is part of the effort to keep my mother socialized and in the "world".

Last night, we went to Vic and Angelo's in downtown Delray Beach, Florida. A really fantastic venue. If you click on the image to the left, you'll hear a nice rendition of a song you might recognize.

Usually I stand and my mother sits. Since I always have a smile on my face, people find it easy to approach and talk with me.

Last night, I had a conversation with a woman and a man that were waiting to go inside (we were eating on the outside). Sure enough, the woman told me about her mother who was diagnosed with Alzheimer's at 58. She was a little surprised to see me, and my 93 year old out and about.

Now to my point. We went to Vic and Angelo's three out of the last four Friday's. And, every time I met someone that was related to a sufferer of Alzheimer's.

Alzheimer's seems to be everywhere.

Advice and Insight into Alzheimer's disease
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100 Million Adults Touched by Alzheimer's

Examining the Impact of Alzheimer's Disease in America

More than half of Americans report that they have been touched by someone (living or deceased) who has Alzheimer's disease, and roughly a third of Americans are worried about getting Alzheimer's. The majority of Americans have a poor understanding of the fatal and progressive brain disease and the extent of its impact on individuals and society.

These are among the key findings of the HBO ALZHEIMER'S PROJECT/HARRIS INTERACTIVE CENSUS, a new survey that reveals the impact of Alzheimer's, what Americans think about the disease, and how it has affected them, their relatives and friends.

The survey found that:

• 54% of the U.S. population, or more than 100 million people, has been touched in some way by Alzheimer's.
• More than half (52%) of those surveyed reported knowing someone living with the disease or someone who had it, but is now deceased.

Source HBO and Harris Interactive

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(R)evolution in Alzheimer's Related Caregiving

One of my greatest fears is the day I might have to place my mother in an Alzheimer's care facility. I say might because I pray that I'll never have to do it.

I receive emails all the time from people that experience the guilt, angst, and remorse of having place their loved one in a Alzheimer's care facility that provides little care, and is a horrid environment for their loved one.

Our reader Rose LaMatt, wrote of her own nightmare experience after she placed her loved one into an Alzheimer's care facility. In Just a Word, she writes with real, raw, emotion about the myriad of feelings she experienced when moving her loved one from the first Alzheimer's care facility to a second. Reading her words were eye opening, and gut wrenching.

Sadly, its ugly out there.

It doesn't have to be that way...........

To continue reading go here.

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Bob DeMarco is an Alzheimer's caregiver and editor of the Alzheimer's Reading Room. The Alzheimer's Reading Room is the number one website on the Internet for advice and insight into Alzheimer's disease. Bob taught at the University of Georgia, was an executive at Bear Stearns, the CEO of IP Group, and is a mentor. He has written more than 700 articles with more than 18,000 links on the Internet. Bob resides in Delray Beach, FL.

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Walmart and this Alzheimer's Caregiver

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My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 93 years old, suffers from Alzheimer's disease.

I learned in my role as an Alzheimer's caregiver that exercise, bright light, socialization, and simple tasks that allow my mother to use her brain have a positive effect on my mother's quality of life and behavior.

I am always searching for new ways to keep her active and in the world.

About a year ago, I came up with a new idea and decided to give it a try.

I took my mother to Super Walmart for an outing. If you have a super Walmart near you, you already know the parking lot is usually jammed.

When we arrive at Walmart, I look around for a parking space. We do not use the handicapped spot. Reason? Exercise (mission accomplished).

We park, and I walk my mother up to the entrance to the store. Next, I get her into one of those electric shopping carts that allow you to drive around the store. This forces my mother to use her brain (mission accomplished).

When I take her into Walmart we drive around through all the departments. This allows my mother to use her brain for an extended period of time, and to be exposed to the bright lighting (mission accomplished).

My mother usually gets nervous when she is around large groups of people. The experience in Walmart exposes her to lots of people, and sometimes when she is stopped people actually say 'hi' or start talking to her (mission accomplished).

The trip to Walmart satisfies a need to keep her in and attached to the outside world. (mission accomplished).

If I let my mother sit around (actually lay around at home), she often falls into a dark mood. Sometimes she will just stop talking, or worse utter words like " I would be better off dead", or, "I am living on overtime".

I noticed years ago, when I take her out into the world her behavior improves, she starts smiling, and often starts interacting with others (this really makes me feel good--mission accomplished).

To be honest, we both benefit from the trip to Walmart.

My mother gets out, gets some exercise, gets exposed to bright light: while riding in the car, walking up to the store, and in the store. She gets to see people and do one one of her favorite things--shop. She likes the cloths section almost as much as she likes grabbing a box of Cheez-it off the shelf.

For me? I get out in the world and stay attached to other human beings. This beats staying at home day after day--all alone.

The trip to Walmart is like a respite to me. Even though I am a man, I can now tell you the price of everything we buy. I can tell you we save lots of bucks while shopping in Walmart--another benefit.

We now go to super Walmart weekly.

My advice to you? Get out in the real world and smell the Cheez-it(s).

Bob DeMarco is an Alzheimer's caregiver and editor of the Alzheimer's Reading Room. The Alzheimer's Reading Room is the number one website on the Internet for advice and insight into Alzheimer's disease. Bob taught at the University of Georgia, was an executive at Bear Stearns, the CEO of IP Group, and is a mentor. He has written more than 700 articles with more than 18,000 links on the Internet. Bob resides in Delray Beach, FL.

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Are Alzheimer's Caregivers the Forgotten?

Forty percent of Alzheimer's caregivers end up suffering from depression. Do you want to see this happen to a loved one or friend?

One issue that really frustrates me is the treatment of Alzheimer's caregivers. Most Alzheimer's caregivers hear people tell them how wonderful they are for taking care of their loved one. As a caregiver, I learned to appreciate these compliments. They help, they really do.

However, if you have a friend or a loved one that is an Alzheimer's caregiver and that is all you do -- it is not enough. Many Alzheimer's caregivers are forgotten by family and friends. This is a sad truth that is rarely discussed.

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I meet and talk to caregivers all the time. It is not unusual for them to tell me that as time goes on, and as Alzheimer's worsens, one by one their family and friends fade away. This is understandable -- Alzheimer's is scary and disconcerting. It is hard to accept, hard to understand, and hard to watch as it progresses.

It is not unusual for the friends and family to continue to call and give the caregiver the old 'rah rah siss boom ba" and then they get back their own life.

Meanwhile, the caregiver puts their life on hold -- or worse they have no life -- while caring for an Alzheimer's sufferer. Calling and letting the caregiver "vent" is helpful, very helpful, but it is not enough.

Like it or not, if you are a family member or friend of an Alzheimer's caregiver and you are not helping them--you have abandoned them. I am sure this sounds harsh. But, it's not even close to the harshness of your own behavior.

Caregivers need help. A few hours here and there to get away from it all is an important step in improving their lives. Some time to enjoy the world outside their home. Time to re-attach with others.

Why am I so passionate and adamant about this?

Forty percent of Alzheimer's caregivers end up suffering from depression -- four out of ten. Do you want to see this happen to a loved one or friend? .

Alzheimer's is a sinister disease--it kills the brain of the person suffering from Alzheimer's.

And, it will try to kill the brain of the Alzheimer's caregiver.

I really don't believe this problem is well understood.

Here are my immediate suggestions.

• If you know an Alzheimer's caregiver, find a way to organize the troops--family and friends--and get involved. Somebody has to take the initiative and if you are reading this article--take charge now.
  
• If you know a family that is dealing with Alzheimer's send them the link to this article and encourage them to organize up their own troops and do something.
• Nothing works better than a small team of caregiver helpers. The key words here are team and team work.

Here are some actions that will improve the life of the caregiver and help them avoid depression.

• The Alzheimer's caregiver needs to get away from it all. They need a respite every few days. This means someone must taking over while they go do something they enjoy. You might find this difficult to believe, but when I get to go to the store, take my time, and look around at the surroundings -- it is a treat. I bet you take it for granted.
  
• Invite your Alzheimer's caregiver and their loved one over for lunch or dinner. Most Alzheimer's caregivers tell me that one of the biggest problems they face is socialization. If you don't believe me--ask. Socializing really benefits the Alzheimer's sufferer (see: A Wonderful Moment). What is not as apparent is how much it benefits the Alzheimer's caregiver.
• This one is tough but could very well keep the caregiver from becoming depressed. Many sufferers of Alzheimer's get up in the middle of the night. This means the caregiver needs to get up with them. Sleep deprivation often leads to depression and it can cause erratic behavior. Imagine going night after night without sleeping well.
  
• Do you know an Alzheimer's caregiver? Ask them when was the last time they went to a movie? You might be surprised when you hear the answer (that's went, not watched). Solve this problem through team work: one person can look after the sufferer, and the other one can take the caregiver to the movie. This is a "get away from it all experience" that is really beneficial to the mental health of the caregiver.

Here is what I learned. Many caregivers get abandoned by friends and family. The reasons for this varies widely--ranging from denial, dysfunction, to fear of Alzheimer's. Many times friends and family while living their own busy lives fail to realize what is happening to the caregiver. An Alzheimer's caregiver might vent to you or me about their difficult day; but, they rarely tell friends and family that they need help. Worse, they rarely get asked directly from friends and family what they need most personally.

I am not talking about running down to the grocery store to pick up a quart of milk.

Let me summarize.

• Forty percent of Alzheimer's caregivers end up suffering from depression.
  
• You can do something about this problem.
  
• The best solution is to organize a small group of people, and to come up with a plan to assist the Alzheimer's caregiver.
  
• You might consider adopting an Alzheimer's caregiver.

I know from my own experience that if you take action you'll end up feeling good about yourself. Action will change and enrich your life.

Don't allow Alzheimer's to take control of the caregiver -- form a team to take control of the problem. The caregiver gets a life, the sufferer gets more effective care, and the team gets the wonderful feeling that comes along with doing something and getting involved.

Note: I realize the above does not apply to all families and friends of Alzheimer's caregivers. On the other hand, I know that this article is about one of life's dirty little secrets....

Bob DeMarco is a citizen journalist and Caregiver. In addition to being an experienced writer he taught at the University of Georgia , was an Associate Director and Limited Partner at Bear Stearns, the CEO of a software development company, and a mentor. Bob currently resides in Delray Beach, FL where he cares for his mother, Dorothy.

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