It is difficult to describe the range of emotions a caregiver might feel or experience in a single day. Imagine being happy and then sad, caring then angry, focused then frustrated -- an almost endless stream of feelings and emotions that conflict.....
By Bob DeMarco
Alzheimer's Reading Room
January, 2009
The caregiver lives an anxiety filled life day-after-day. I doubt that many people outside "the front row" think about or consider this.
My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 92 years old, suffers from Alzheimer's disease. We live our life one day at a time.
 |
| Dotty |
This person, your loved one, begins to act out behaviors that you never saw or experienced before. In the early stage of Alzheimer's caregiving, meanness and nonsensical behaviors are hard to accept.
In the beginning you want to scream. This might be your reaction when a person is intentionally mean to you. You come to the realization with a person suffering from Alzheimer's that this kind of reaction only makes things worse -- much worse.
It is difficult to reason with a person suffering from Alzheimer's. They believe what they say to be true and nothing can change it.
The words above were easy to write. However, the behavior you experience as an Alzheimer's caregiver is not easy to accept. Worse, the behavior is not easy to comprehend. It is not easy living in the front row with Alzheimer's.
I now believe that one of the most difficult things you will ever have to do as an Alzheimer's caregiver is separate out the disease from the person.
It took me a long time to understand the behavior was part of the disease, a reflection of the disease and not part of the person -- my mother.
I want to say this loud and clear for everyone to hear -- my mother is the same person I always knew. The same person. She is not a different person. My mother has Alzheimer's disease.
In order to deal effectively with Alzheimer's disease a Caregiver needs to come to an understanding that the nutty, hard to comprehend behaviors being expressed by a person suffering from Alzheimer's are part of the disease, and are not a deliberate action on the part of the person suffering from Alzheimer's or dementia.
This might read as a subtle nuance. However, it took me years to come to this conclusion and to accept this reality. It is very difficult to separate the person suffering from Alzheimer's disease and Alzheimer's disease into two distinct separate parts.
Once I was able to do this, I found myself starting to do things that dramatically improved the quality of our lives -- we started to live our lives in much the same fashion as we had before the Alzheimer's diagnosis.
I don't want to give the impression that this was easy. We had to adapt and make changes as the disease progressed.
For example, when I took my mother out to dinner at a nice restaurant she wouldn't say a word -- for 45 minutes or longer. I suppose she was intimidated or disconcerted by this new unfamiliar environment.
By the time we arrived back home I had a stomachache. The behavior was breaking my heart, and my stomach.
This is when I first discovered that if I went into my Alzheimer's bunkhouse, and thought about the problem for a while, I might be able to discover a solution. I did.
I started taking my mother to the bar area in crowded restaurants to eat. More or less, to the kinds of places where people tend to talk to the people sitting around them, and also eat at the bar.
Not only did this allow us to start living our life again -- it brought with it several additional unexpected benefits. Exercise, socialization, and bright light. I have written about these before, and they all help improve our day.
Here was the biggest benefit. People started talking to my mother. People we had never met before in our lives. They talked to her like she was a regular person. Sure, she told some tall tales. I learned to laugh right along with people as they listened, instead of letting these "unrealities" bother me.
This was a major part of my own metamorphosis. I learned to accept what I could now attribute to Alzheimer's as Alzheimer's. Behavior that once filled me with all kinds of negative emotions, now made me smile or chuckle.
After all, Dotty is my mother, she was always a bit of character, and she still is a bit of a character to me.
This worked so wonderfully well that it encouraged me to start doing all kinds of new things.
Coming up -- I can't take her out because she eats with her hands. How I solved this problem for a friend with a short trip to the Alzheimer's bunkhouse.
The Metamorphosis of This Alzheimer's Caregiver (Part One)
Alzheimer's A Wonderful Moment in Time--Mom Dances for the first time in years
Read More on the Alzheimer's Reading Room
- Communicating in Alzheimer's World
- What’s the Difference Between Alzheimer’s Disease and Dementia
- How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You
- Learning How to Communicate with Someone Suffering From Alzheimer's Disease
- What is Alzheimer's Disease?
- What is Dementia?
- Alzheimer's World -- Trying to Reconnect with Someone Suffering from Alzheimer's Disease
- Advice and Insight -- Alzheimer's Reading Room
- Dementia and the Eight Types of Dementia
- Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients
- Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes
- The Mini-Cog Test for Alzheimer's and Dementia
- Urinary Incontinence -- How We Beat Alzheimer's Incontinence
- 100 Good Reasons to Subscribe to the Alzheimer's Reading Room Now
 The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diagnosis and Treatment for Memory Problems |  The 36-Hour Day A Family Guide to Caring for People with Alzheimer Disease |
Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,390 articles with more than 272,100 links on the Internet. Bob resides in Delray Beach, FL.
Original content Bob DeMarco, the Alzheimer's Reading Room
