Nov 28, 2011

Caregiving Can Be Overwhelming, Like Walking Up the Down Staircase

By Bob DeMarco
Alzheimer's Reading Room

No one really likes constant change. We are more comfortable waking up in our own bed and going about a set routine each day.

Imagine what it would be like if each new day were different than the one that came before it. Then imagine what it might be like to live with the understanding that at any given moment things might change for the better or worse. Change.

I'm sitting here remembering how I use to wake up each morning and immediately feel a sense of angst. I never knew how the day would start, and I didn't know if it would be good or bad.

There was a long two year period when Dotty didn't smile or laugh. I can assure you few of those morning wake ups were happy times.

Eventually, after several years we turned the corner. For the most part now, Dotty wakes up smiling and in a good mood. Not every day, but most of the times.

As a result, I no longer feel that pain in my stomach when I wake up in the morning. I bet many, maybe most of you, know what I am talking about. You wake up wondering if its gonna be bad. If so, you probably don't want to get out of bed. You might be thinking I don't want to go through another day like this.

Of course, if you stay in bed a while, you can be assured that your Alzheimer's patient (if still mobile) will get up, and then who knows what might happen next. Take your eyes off of an Alzheimer's patient for a long enough period of time and something is going to happen. Many times that something will be a "bad" thing as opposed to a good thing.

An Alzheimer's patient if left unattended might unintentionally try to burn down the house, or, "make a run for it". The great escape.

Who knows what they will try next. Take your eyes off them and you will find out soon enough. Sometimes the things that a person living with dementia will try to do are downright amazing. Amazing after the fact, not while it is happening.

Ever had a person living with dementia do something you couldn't believe? Something you could never have expected? Something you no longer believed they were capable of doing?

For example, climb up on a chair, a pair of spaghetti tongs in hand, and try and snap a bag of potato chips off the top shelf. Imagine. Chair, climb, tongs in hand, snag bag, climb down, and then stab the bag right in the heart (the middle of the bag) with a knife to open the bag, all to get a handful of potato chips. I'll skip the stories about burning the house down for now.

Layer on top of this a simple reality, Alzheimer's patients are constantly changing. As soon as you get comfortable in your daily routine, they change. For the most part they change for the worse because they can no longer do things most of us take for granted. Instead, we have to help them, or do them for them.

For most of us this process continues for a long period of time.

Well here is what I am wondering?

Does it get easier or does it get harder? Does it get easier because at some point we learn how to deal effectively with constant change? In other words, the types of actions and behaviors that use to be so unsettling become part of the norm.

Did we change? Do we learn to accept the way things are?

I think that explains one part of the process.

On the other hand, there is one thing that never changes, the walk up the long down staircase.

For me, Alzheimer's caregiving is like walking up a down escalator that is moving very fast. No matter how hard I try to walk up, faster and faster, I still end up going down. The same can be said for the person living with dementia. Down the up escalator.

The sad reality, some Alzheimer's caregivers finally get exhausted trying to walk up the down stair case. It is easy for me to understand why.

How many times has someone said to me, "I don't know how you do it". You are darn right you don't know.

I feel like saying. Go over to Macy's. Try and walk up the down escalator and see how people react and how you feel. Then we can discuss how we, the caregivers, do it day after day.

One thing for certain,

"Change leads to new discovery from within. We then become more than we were before."

More Insight and Advice for Caregivers

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob lives in Delray Beach, FL.

Original content the Alzheimer's Reading Room