My Story: Riding the Caregiver's Emotional Roller Coaster

Taking care of a parent with Alzheimer's disease can be frustrating, but ultimately fulfilling.

Caring for a parent with Alzheimer's disease can be frustrating and stressful, Bob DeMarco found, but also exhilarating. (Photo: John Lund/Getty Images)

Aug 20, 2012

It is difficult to describe the range of emotions an Alzheimer's 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.

The caregiver often lives an anxiety filled life day-after-day.

I doubt that many people outside "The Front Row" think about or consider this. Those outside the front row are normally too busy living their own life.

Take me, for example. I doubt that I communicate the amount of anxiety I feel in any given day to many people.

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Oddly, the only way most people could find out the way I feel and the way I think is by reading this blog. I say odd because it is likely that the people who read this blog on an ongoing basis know more about me than my close friends and people I see daily.

One reason why this happens is because I am reluctant to be an alarmist and I make a conscious effort not to be too negative. I certainly don't want to overreact within my own self. In other words, I don't want to turn me into a negative person by constantly obsessing on the negative.

The point here is that Alzheimer's caregivers experience a tremendous amount of anxiety.

Let’s take an example that is small, but real.

Most days when I take [my mother] Dotty to the pool it starts off as an experience that is at best difficult.

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For some reason, as soon as it is time to go to the pool, Dotty's behavior changes.

Sometimes, and with a suddenness, she literally can't walk. She goes off into a totally different mindset. When I start moving her toward the door it seems as if her feet are stuck to the ground. She tells me, "I can't walk, I am going to faint." For reasons related to Alzheimer's disease she just doesn't want to go.

It is like a lock is put on her brain and she can't tell her feet what to do.

Once out the door it feels like each step is a tremendous effort for Dotty. She feels heavy as I hold her hand. It takes minutes to go 30 feet.

Once we are at the entrance to the pool and park the car, same story.

Once I get her into the pool area, I have to listen to more negativity. "What the hell are we doing here? I don't want to go in. The water is freezing" (the pool is heated). A stream of negative statements.

Once we get into the water for a few minutes, it all changes.

Now, Dotty loves the water. Remarks on how clean the pool is. Asks me why we don't do this every day? Tells me we will come earlier tomorrow and stay for a few hours.

This is a yin and yang experience for sure.

You might wonder how or why I do it.

On the front side I feel the stress. Sometimes anxiety and angst.

On the backside I see the change in Dotty. Her better mood. The smile on her face. The way she walks better. I feel the elation and feeling of accomplishment. I immediately notice the benefits of this endeavor.

In the end, it is worthwhile.

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I go from stress to a feeling of accomplishment. I know that Dotty is benefitting from exercise, getting out of the house and into bright light, and sometimes she gets a good dose of socialization at the pool.

I ride the Alzheimer's disease roller coaster. Ride the emotional roller coaster.

I experience many of the psychological and emotional aspects of being an Alzheimer's caregiver in this one example. An example that is easy to describe. But this is only one segment of the daily ride on the Alzheimer's roller coaster.

Within this context, I remember when Dotty used to run over to the pool on her own. No car. She walked. She wanted to go. I have to compare that to the current state of affairs.

Imagine knowing a person your entire life and then seeing their behavior change—for the worse.

I don't want to confuse you here. Dotty is the same person I always knew.

She is not a different person. She is limited by the effects of her deepening forgetfulness.

It is easy to miss the past when you deal with Alzheimer's.

In order to deal with the pool situation, I need to constantly remind myself that when Dotty is complaining, it is a symptom of the disease. I have a good understanding of this now. Nevertheless, I still feel the angst and the stress inside of me. Every time.

I must remind myself that 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 is a very thin line. The reminding myself. It is difficult to remember this all day long as each stressful act presents itself.

Even after years of caregiving, the difficulties can impact on your psyche.

It took me years to understand and accept this new reality.

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If you learn that the symptoms of Alzheimer's disease are often the cause of the behavior then you can finally learn to deal with Alzheimer's disease effectively.

At the minimum, you won't blame the patient for their activity. Or blame them in the same way that you would blame someone without Alzheimer's disease for engaging in a similar behavior.

I don't know how every other Alzheimer's caregiver does it.

I know that I have to continually remind myself that many of the acts and behaviors that my mother engages in each day are the "new normal.” This is how it goes in Alzheimer's World.

In other words, I need to remind myself not to blame Dotty, not to blame Alzheimer's, and not to play the blame game.

Instead, I think of Dotty as being deeply forgetful. I think of Alzheimer's World as being a part of our "new normal.”

I remind myself that the ride on the Alzheimer's roller coaster can at times be stressful and scary, but at the end it can also be exhilarating and fulfilling.

I remind myself that how you feel at the end is the most important feeling of them all.

Do you have a caregiver story to share? Let us know in the comments.

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