Snapshots of Dementia: ‘I Can’t Care’

Posted by Marti on August 19, 2022 in Dementia | 1 comment

Although I’ve written about many painful parts of our dementia journey as well as some positive ones, I want to discuss a primary dementia symptom/sign that I’ve mentioned only in passing. If I had understood how big a role it plays in many types of dementia, I would have pushed for a diagnosis sooner and harder than I did. This known-but-unrecognized symptom? Apathy. 

If I had known about this close connection earlier, I would have realized that many of the following were not just abnormal, often hurtful actions but signs of something dangerous happening in Tom’s brain. All of these became part of our lives at least two years before Tom was officially diagnosed with dementia in the fall of 2019.  

— Withdrawal from friends: Always the life of the party who would keep talking to people long after I was worn out, Tom now waited for others to take the lead in group settings and often wanted to leave early. 

— Lost celebrations: He did less and less, sometimes nothing at all, to recognize birthdays, anniversaries, or other special days—a big change from the person who would find the most random of reasons to celebrate. 

— Lack of compassion: Previously an expressive personality, Tom displayed a flat affect/expressionless face even when he knew he had hurt someone (usually me) deeply. Prior to his diagnosis, we met with marriage counselors for nearly a year. At one point, they suspended our sessions because of this type of behavior and the fact that, even when they called him out on it, nothing changed. 

— Withdrawal from family: For a few years, Tom refused to travel with me to visit my widowed mother, saying he couldn’t take time off work. Later, he refused to attend a baby shower for our expected first grandchild for the same reason. Later, he came to see our newborn grandson for the first time only when I insisted he make the trip.  

— Lack of interest in his health: Tom stopped seeing the dentist several years before diagnosis and only went to the doctor when I insisted he go. He never seemed interested in what we were finding (or not finding) out about his potential dementia. It almost seemed as though this were all my problem, not his—which is what he told the neurologist who diagnosed him. 

Tom’s apathy showed up in other ways, but these are some of the bigger areas I noticed. In this video, dementia expert Teepa Snow explains some of the reasons behind the apathy associated with vascular and other types of dementia, including the frontotemporal variant Tom has. She says it’s not that the person with dementia doesn’t care anymore—it’s that they can’t care. The part of their brain that allows them to care about things doesn’t work anymore. 

In Tom’s case, his apathy now shows up in areas such as: 

— Clothing: He’s never had much interest in fashion, but he would now wear the same sleep shorts and undershirt all day, every day if I didn’t encourage him to get dressed. 

— Personal Hygiene: He often goes a few days without shaving, something he rarely missed in the past, and if I don’t urge him to shower, he won’t. 

— Activities: Some days, even activities he enjoys, such as going to church, are less important to him than staying in his recliner playing games on his iPad. 

— Social Interaction: Not long ago, I told him about a close friend’s death; Tom didn’t even respond. Some friends visited to help with a household repair, and Tom expressed no interest in what they were doing or why they were there. Even our grandson can’t always draw Tom out of his recliner anymore. 

— Compassion: He was very concerned when I had my accident last year, but he expressed his concern in an abnormal way, pacing around our daughter’s yard and crying. Later, as long as his needs were met, he rarely bothered to check on me or ask how I was feeling.  

Tom can’t care—until he can. At times, the old Tom resurfaces, and we see his warm, compassionate self. Recently, when our church commissioned a young family leaving to serve as missionaries in Africa, Tom cried and cried. His moods tend to take dramatic swings, so he may express great emotion in one situation and none at all in the next.  

But music still touches his heart; and others have noted the emotion he reveals when he sings. For anyone who knows Tom well, it makes sense that, of all areas, music would serve as a connector to even this broken part of his brain. He also seems less apathetic with those outside our family than with family members, probably because he’s trying harder than he feels he needs to when he’s in our “safe space.”

I’m glad he feels safe with us. And I’ll keep asking God to help me not get upset when it seems Tom doesn’t care—because much of the time, he can’t.

If you have a friend or loved one who seems unusually apathetic or responds in an uncaring way to people or situations that should matter to them, you may want to check out a brief explanation such as this one about apathy and dementia. You may even want to visit with your primary care physician if you suspect some problems. I still wish I had pushed harder sooner than I did, but I didn’t know what to expect—or that a caring person like my husband would change so much.  

Feel free to share your experience or input in the comments here or on social media. Our story matters—and so does yours.