Reluctantly, I am documenting a part of our life I never anticipated.

It’s an easy bet that anyone thrown into a caregiving role didn’t expect life to turn out as it has.

It’s also true that for many of us, the caregiving has brought us strength we never expected.

Everyone seems to have settled on calling this a journey. I get it. Life is a trip we take. It’s a journey we have undertaken and a course that we are set upon to follow.

Whither it takes us, we go.

Like many others amongst us, our journey took us to unexpected places.

Several years ago, as a culmination of unforseen outcomes, the love of my life was diagnosed with Lewy Body Dementia.

The diagnosis came at the tail end of lots of vaguely identifiable symptoms.

In other words, it was clear that something was very much amiss before we got the actual word.

In truth, as is true of many of the 400 dementias, he may have a mix. LBD is just his prevalent disease.

Unfortunately, we are lucky in that he knows what he has. He is no longer in denial. That is heartbreaking.

There are many excuses for my reluctance to post about such a personal matter.

It’s Lewy Body Dementia Awareness Month, and that has jogged me towards sharing our experiences.

My husband was terribly confused at first. Those were his symptoms. He didn’t know who I was and would often also try to find me. He denied the disease, and this was hard.

Now that he understands that he has dementia it’s more heartbreaking. This is his journey, and recognizing it is how he copes.

He is still often confused. Lewy Body (which he sweetly calls Benny Blue) is an up and down route. Sufferers and their loved ones call it a roller-coaster.

I have always hated roller-coasters.

There are expert resources, and the LBDA is one. For information, go to https://www.lbda.org/.

It’s been an unexpected journey in every way.

Along the way, I have met women and men who care for their partners with dementia. Some of these caregivers are providing comfort and support to former spouses or even ex-boyfriends.

This speaks to the connection they have with their exes. It also speaks of the deep connection that love builds.

Most of us would not choose caregiving a loved one. It’s a role that is thrust upon us, often suddenly. My path to carer keeps evolving. I have become a bit better at it.

When your spouse has this disease, it is all too easy to let frustration lead. Patterns of your life, which include impatience and exasperation, come to the forefront.

It takes time, but love will remind you.

That doesn’t mean I don’t lose my temper.

I have heard others say it, and it’s true for me as well: since Burt’s diagnosis, I have found a deeper love than I thought possible.