this is our life

Burt’s p.o.v.

The last couple of days, he’s brooding over how long he has left to live. He says 28 but means 2028, which is 8 years after his dx in 2020. I say no one can predict, and 8 years might be an average.

My husband is a brooder. Before his diagnosis, he tended to be moody. Lewy Body Dementia, the roller coaster that it is, has accentuated his mood swings. Worrying about the time left to him is one side of those swings.

Since I referred to ‘swings’, I also have to acknowledge the times he finds enormous happiness in the smallest of things. I need to tell you that he is often grateful and expresses gratitude to me.

He has said that even with the disease, he is the happiest he has ever been.

His worry over his mortality is the current mood. Not all the time. That would require more concentration than he’s capable of at this point.

From the other’s perspective

It’s easier to speak of the “job” we do as caregivers and how hard things are for us.

It’s more of a heartbreak seeing things from the point of view of our beloved.

Dementia is very hard on them. My husband explains that he has a brain disease to people he knows.

Sometimes, he is stoic, philosophically discussing his condition. Other times, he asks, “Why? Who gave me a brain disease?” He worries over what is happening to him. He is engaged with his condition.

I know his challenges are also mine. I have to remind him that I love him and care for him. He feels alone and isolated and dependent upon me. All this has to be too much for him, too.

Not every person with dementia (pwd) is as aware as he tends to be. They all suffer through difficult symptoms.

As a caregiver, knowing how hard Lewy is on him helps keep me more patient.

All in a day’s work

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.

Where we are

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.

Hesitant

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/.

Along the way

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.