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Marie Marley

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Alzheimer's Caregivers: Smart Ways to Decrease Your Distress

Posted: 07/10/2012 10:38 am

Caregivers of people with Alzheimer's disease typically suffer deeply when their loved ones are upset or agitated about something. But there is a way to reduce that emotional distress. It's very simple. You just have to be aware that most people with cognitive impairment live only in the present (although they may maintain memories of emotionally-charged incidents.) This means that people with Alzheimer's have the following traits:

1. They usually quickly forget unpleasant things that happen to them

2. They often adapt to change faster than their caregivers do

3. They typically don't worry about the future

Let's look at each issue:

1. People with Alzheimer's usually quickly forget unpleasant things that happen to them

People with cognitive impairment usually don't stew about bad things that happen to them. That's because of the disease. They don't fret over things that happen simply because they don't remember them.

Yet caregivers who experience their loved one's distress over some issue tend to become quite upset. The reason is that caregivers don'teasily and quickly forget painful things that happen to their loved ones. They suffer long after the person with Alzheimer's has completely forgotten the issue and moved on.

An example is when my friend, Ann McHugh, DVM, of Overland Park, Kansas, took her mother, who was living in a nursing home, to her own home on Christmas day, thinking this would be a special treat. But once there, her mother became deeply distraught and kept begging to go home.

As Ann later narrated that story to me, it was clear that she was still upset about it. And the shocking thing was that this event that had occurred three years earlier. It's almost certain her mother forgot all about it the next day, if not the moment she arrived home that evening. So it was Ann -- not her mother -- who continued suffering.

2. People with Alzheimer's often adapt to change faster than their caregivers do

People with dementia, particularly those in the mid- to late-stages, often adjust to change more easily than their loved ones do because they don't remember how things were before the change. Thus, they are not aware any change has taken place. This is especially true if the change is applied in a consistent manner with a lot of structure and a regular routine.

For example, when Ed, my Romanian soul mate, was moved to another room at the Alois Center, he kept saying over and over in a desperate and plaintive tone of voice, "I want to go home." I was terribly distressed because he was suffering and there was nothing I could do to help him. I cried all the way home that day.

Yet when I arrived to visit the next day he had forgotten all about it. Nonetheless, that urgent plea reverberated in my mind and caused me emotional anguish for days afterward. I was the one who was suffering -- not he.

3. People with Alzheimer's typically don't worry about the future

People with cognitive decline, especially those in the mid- to late stages, typically don't worry about the future. They don't experience the kind of anxiety about the future that we may because they don't have the mental capacity to do so.

For example, we are all aware that one of these days we are going to die. And the realization becomes more acute for people who have a terminal illness. But people with Alzheimer's rarely -- if ever -- think about death. They don't have a concept of the future and thus they don't have a concept of death. Nor do they tend to worry about other bad things that might happen to them.

In the early stage of his disease, Ed spent a lot of time thinking about death. But when his illness progressed he completely stopped.

So one secret to reducing your emotional distress is to remain aware that your loved one probably lives only in the present. That way you can be more at peace when he or she gets upset about something. You will be able to end your own suffering as quickly as your loved one does and then you can both move on to something pleasant.

This also points out the need to focus on making sure the person is having an enjoyable time in the present, and that you should not worry about mistakes you may make in your caregiving, because your loved one will most likely soon completely forget the incident.

To read more about Ed you can read my book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, and visit my website, which also contains a wealth of information for Alzheimer's caregivers.

 
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