Caring for a Loved One With Dementia

What You Might Not Know

Photo by Eric Ward on Unsplash

We stood across the island counter in the kitchen of our apartment as I nervously reminded my furious husband, Dan, that we had to leave for his appointment in ten minutes—the one we had made together two days earlier. He thought we were making it for his stomach problems, but I knew it was to get help for his memory loss.

Well, he was NOT going to a doctor and DID NOT agree to an appointment, I was lying. There was no way I could get a resistant 150-pound man down four flights of stairs, into a car, and into the doctor’s office. I canceled the appointment.

For four years, that was my life. I went from living with someone kind and thoughtful to living with someone angry and unable to remember what he agreed to or said from one minute to the next. He looked the same, but he was a very different man.

People face numerous obstacles when balancing caregiving with child-raising demands, careers, and relationships. They are at increased risk for burden, stress, depression, and a variety of health complications.

Additional challenges I faced when caring for a loved one with dementia - and ones others may face include:

• Social Isolation: We couldn’t take Dan anywhere for fear he’d say something offensive to or about anyone within listening distance. During COVID restrictions, no one could visit, and we couldn’t go out, which increased our isolation.

• Financial Difficulties: The costs of a stay in a memory care facility can be astronomical. Four years ago, I paid $14,000 a month for his stay there.

• Sundowning: He became argumentative and nasty from about 4 p.m. to 7 p.m. every evening; his behavior was defiant and unmanageable.

• Wandering: he would take off, and I wouldn’t know where he was. Fortunately, I had a Find Your Phone app and a pet camera to help keep track.

• Relationship Changes: We were no longer a couple. I was the parent of an unruly, resentful child. The last time we saw each other, he no longer knew me.

• No Reasoning: I would explain something, and he would forget, deny, or argue within five minutes. We repeatedly warned him not to answer his phone, but he insisted on having and answering it. Many nights, I got up to block phone numbers.

• Personal Needs: He still cared for himself marginally but refused to change his clothes or shower. He saw no reason to; he’d only have to do it again the next day.

Caregivers manage various complex situations, and caring for a loved one with dementia includes other stresses.

I would advise that younger me to

1. Take care of herself first, or she won’t have the energy to care for Dan.

2. Learn all she can about the disease and what to expect, but do not allow the information to become a self-fulfilling prophecy or an excuse.

3. Be more compassionate with both of you.

One of my earlier painting attempts.

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Janice Walton is a psychologist, widow, mother, grandmother, great-grandmother, and writer. Her book Aging Well: 30 Lessons for Making the Most of Your Later Years is available on Amazon, and she has written articles for Substack.