For caregivers, it's OK to feel good and bad

In a recent blog, Linda wrote: "As a caregiver, this early stage of my husband's Alzheimer's is a bag of mixed actions. He's not reacted to the diagnosis any more than a common cold. I often feel he is kidding around with me and finding ways to get out of doing things. I don't know what to feel and I don't know what to do. What is going on?"

I wanted to share some thoughts on what Linda wrote because I'm convinced many other Alzheimer's caregivers feel the same. One of the most common neuropsychiatric symptoms in Alzheimer's is apathy. Apathy is a symptom of the disease caused by changes in certain regions of the brain.

Persons with apathy show a lack of interest, initiation and motivation. Activities that they once engaged in seem of little interest anymore. They appear passive, indifferent and may lack "normal" emotion or concern toward others or the environment around them.

When apathy is present, Alzheimer's caregivers often describe their loved ones as stubborn or lazy. Caregivers feel that they have to take responsibility for everything; understandably, this can lead to conflict. Caregivers can feel like they are constantly giving orders, nagging, and questioning the intentions of their loved one with the disease. Over time, they may feel resentment toward their loved one, and become more angry and overwhelmed as their caregiving responsibilities increase.

It's important to keep in mind that persons with Alzheimer's generally lack the ability to scheme or plot a way to "get out of" something. No degree of nagging or persuasion will motivate someone with apathy. In addition, pointing out their lack of interest, inability to complete common tasks, or overall unwillingness, will not improve the situation. In fact, it will probably make things worse.

This does not mean that Alzheimer's caregivers should never feel angry. To the contrary, caregivers have every right to feel all emotions that come their way — anger, fear, sadness, guilt, pain. If caregivers don't give themselves permission to feel what they feel, all emotions eventually go numb. To feel love, joy, contentment, we must accept whatever our lives (and our feelings) are at the moment. Give yourself permission to feel it all Linda — good and bad.

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