Stomping out stigma associated with dementia

“I love a good hug!” I said after a friend with Alzheimer’s gave me a tight squeeze and kiss as we passed each other at church. His wife said, “Never know what’s coming next,” smiling, while herding him towards the sanctuary.

I was so glad to see them. Too often, what I see instead are couples becoming overwhelmed to leave home because of various behaviors associated with the later stages of dementia. Unfortunately, at the very point when both members of a couple need the support of others, they retreat from the public eye.

It’s understandable. It can be daunting to experience a toileting accident, an outburst, extreme agitation or repetitive questioning outside the home. And some days simply aren’t good days to head out; but some days are.

Many years ago, after the birth of my first child, I was briefly hospitalized for severe postpartum depression. Several close friends conveyed to me, through my husband, that they wanted to visit. While I wanted to see them, I requested—again through my husband—that they not come. I was so ashamed. After all, what was I, a well-educated, somewhat accomplished professional doing on a psych ward, weepy and unkempt, with a foggy brain?

Only much later—almost two decades later—did I come to understand that sometimes I would be the strong one and able to help others and sometimes I would not.

It is humbling to show up in the world – one’s human foibles front and center – but it is also brave and important.

That bears repeating: it is simply a disease of the brain.

Just as many of us readily sign up to bring a hot meal to someone being treated for cancer, maybe one day, more of us will do the same for a caregiver caring for a spouse with Alzheimer's or any of the other types of dementias. As the sixth most common cause of death and growing, we will need to.