Who Suffers More - People With Alzheimer's or Their Caregivers?

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<p>Marie and Ed</p>

Marie and Ed

Marie Marley

People with Alzheimer’s disease can become upset and agitated about things that happen to them. And when you, as the caregiver, witness your loved one’s anguish, you may become distressed, too – sometimes more so than your loved one.

There is a way, however, to help reduce your stress under these circumstances. It’s very simple. You just have to remind yourself that people with dementia typically live only in the present. This means they may have the following traits:

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

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

3. They often do not worry about the future

Let’s look at each one:

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

Some people with Alzheimer’s disease don’t stew about bad things that happen to them. That’s because of the disease. They don’t fret simply because they don’t remember the events.

Yet caregivers who witness their loved one’s distress can become quite upset. The reason is that caregivers don’t easily and quickly forget painful things that happen to their loved ones. They may continue suffering long after the person with Alzheimer’s has completely forgotten the issue.

Ann McHugh, DVM, a veterinarian in Overland Park, Kansas, had an experience with her mother that’s a perfect example. “I took my mother – who was also my best friend - to my house on Christmas day one year, thinking that would be a special treat for her. But once there, she became deeply distraught and kept begging to go home. I was shocked and it was very upsetting to see her so agitated.”

As Ann told me the story, it became clear that the memory of it was still painful to her even though the event had occurred three years earlier. If her mother was like many people with Alzheimer’s, she likely forgot all about it the next day, if not the moment she arrived home that evening. So, as too often happens, it was the caregiver – not the patient – who continued suffering.

As we talked Ann agreed. “It’s true,” she said. “Many of the struggles we face as caregivers of patients with Alzheimer's, are our struggles. The patient truly lives moment to moment.”

2. People with Alzheimer’s may adapt to change faster than their caregivers do

People with dementia often adjust to change more easily than their loved ones do because they don’t remember how things were before the change. Thus, they aren’t aware any change has taken place.

When my life partner, Dr. Edward Theodoru, was moved to another room at his nursing home, he kept saying over and over in a desperate, plaintive tone of voice to everyone who passed by, “I want to go home.” I was incredibly distressed because he was suffering and there was nothing I could do about it.

But when I arrived to visit the next day he had forgotten all about it. Nonetheless, that pitiful plea reverberated in my mind and caused me emotional pain for days afterward. As I describe this episode in my memoir (‘Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy’), it’s obvious that I was the one who was still suffering – not he. I, too, had fallen into the trap that catches so many caregivers.

3. People with Alzheimer’s often don’t worry about the future

Many people with dementia don’t worry about tomorrow. They don’t experience the kind of anxiety about the future that we may simply because they don’t have the mental capacity to do so.

For example, we are all aware that one of these days we’re going to die. And the realization becomes more acute for people with a terminal illness. But some people with Alzheimer’s (also a terminal disease) rarely - if ever - think about death. Many don’t have a concept of the future and thus they can’t have a concept of death. Nor do they tend to worry about other dire things that might happen to them.

So to help reduce your distress the next time your loved one is distressed, try to remain aware that people with dementia often live only in the present. That way you can end your suffering as quickly as your loved one does, and then you can both move on to something more pleasant.

Marie Marley is the award-winning author of the uplifting book, ‘Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy,’ and co-author of ‘Finding Joy in Alzheimer’s: New Hope for Caregivers. (Both books available on Amazon.) Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer’s caregivers.

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