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When Your Spouse Has Severe Dementia: Interviewing the Heroic Caregivers

Every so often, I’m assigned a piece that I know will be emotionally challenging, but I feel compelled to pursue it. That happened recently, when an editor at a publication called Health Central wanted me to interview spouses of those who have dementia and experience psychotic episodes. The goal was to hear their stories and provide advice for others who will soon be walking in their shoes. The result was this article, called, “Dementia, Psychosis and the Lonely Spouse”

          Dementia is so common that I’ve known many people who have suffered from it. According to the World Health Organization, over 35 million people are currently living with dementia; that number is expected to triple — reaching 115 million — by 2050 as so much of the population ages. Dementia is a cruel disease because it robs older people of their memories and dignity. But caring for spouses with dementia can be particularly taxing, since it also can cause those who are suffering to become paranoid, suffer delusions and lash out. It’s a truly thankless task.

<p value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80">          The people I spoke with were either juggling a full or part-time job with caregiving or had to give up their career to take care of their spouse. They bravely shared the vexing details of their daily lives, relaying stories of their spouse being physically and emotionally abusive as they tried to help them with routine tasks like toileting and eating. They provided valuable advice on how to keep their own sanity while ensuring their loved one was content and safe.          The people I spoke with were either juggling a full or part-time job with caregiving or had to give up their career to take care of their spouse. They bravely shared the vexing details of their daily lives, relaying stories of their spouse being physically and emotionally abusive as they tried to help them with routine tasks like toileting and eating. They provided valuable advice on how to keep their own sanity while ensuring their loved one was content and safe.

          Though they lamented that their spouse was no longer there mentally, the one common theme among those I interviewed was the deep and abiding love they had for their partner. They felt that caring for their spouse was the right thing to do. I didn’t sense any feelings of resentment or anger about their predicament. There was just profound sadness. I am often inspired by the many people I have had the privilege of interviewing. This was no exception. Speaking with some of those who are taking on the incredible burden of caring for a spouse with this condition provided me with a glimpse of the good in this often-dark world.

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