The really horrible, ugly, truth about dementia

Two weeks ago we had a Saturday Easter Brunch at my sister's home. My sister invited a few cousins, my older sister, Mom, my daughters-in-law, my granddaughter and myself. I picked Mom up at the nursing home on my way through Holland. As always she was genuinely glad to see me. Although she can no longer leap out of her chair when she sees someone she knows walk through her door, once she gets to her feet she still throws her arms around our necks, cries into our shoulders and then asks, "Where are we going?"

This question isn't so much because she wants to get out of the nursing home. It's more because she wants to go somewhere. Anywhere. We (my sisters and I) always thought Mom and Dad were an adventuresome couple. Truth be told, Dad would have been content to sleep on the couch (in his later years, anyway) while Mom was the one who needed an outing.

Even with the dementia, Mom still likes to "go somewhere."

The brunch was lovely. My sister had the table set with Mom's Fostoria Americana crystal and used Mom's best silverware.

Mom always had an interest in dinnerware -- creating beautiful place settings complete with linen napkins and some kind of floral centerpiece. In fact, she was known for it.

When she she hosted her Republican Women's teas or church Lady's Guild, she almost always used her best. And over the years she acquired quite a collection. Some were wedding gifts, some were gifts from her sisters, some were pieced she collected on various trips.

For a few short years King and I lived in Cambridge, Ohio and when Mom and Dad came to visit, their trips always included a stop at the Cambridge Glass outlet. Mom would purchase boxes and boxes of crystal to give as wedding gifts.

When Mom and Dad lived in Glenn and they would take their turn hosting Saturday Morning Brunch (a fundraiser for the the Methodist Church missions). Mom would pull out all her best tea services (she had many) and had lovely presentations. One year as they were cleaning up after the event, Dad dropped a box full of creamers and sugar bowls. Thanks to e-Bay we could replace most of them.

But Mom recognized none of this at the brunch. We don't think she really knew where she was.

It's difficult to accept Mom can no longer remember things she held dear to her -- including who we truly are. We aren't always certain she knows we are her daughters. We can accept that to a certain degree. But it is devastating to watch things like  hygiene get lost in her own personal foggy hell. If she could ever be aware of some of the gross and disgusting things she does she would be mortified.

These are the things that don't get mentioned on websites about dementia. No one talks about having to help wash hands and scrub under fingernails. They don't talk about the woman who knew everything about gardening watering her plants with hand lotion. There is no mention that the Sunday School Superintendent will forget what Easter is, or why she got an Easter Lily from a church group.

But it is a reality and to be blunt. . . It sucks.

The way things change

Life goes on and although this winter was not the best of winters -- weather-wise -- we have pretty much continued our routine.

Last week my sister and I met with a representative from the Veterans Administration to go over paperwork to get Mom some of Dad's VA benefits. The VA representative wanted to meet with us to make sure Mom was being cared for and to basically assess us -- making certain we aren't the types to abscond with Mom's money.  (Our Calvinistic training is strong so even if we did take off with her money, the guilt would kill us. Justice served.).

The representative needed to do an assessment of Mom. She made it halfway through the first question: What is your name? She knew it was Chris. She had no idea what a last name was or if she even had a last name.  She didn't know the day of the week, and certainly could not tell him the name of the town where she was living. He made a big X on the page and said, "We don't need to go any further with this part." Good call.

Mom kept saying she couldn't hear us. In truth she didn't understand what we were asking -- even when we wrote it out for her. When Mom gets put on the spot she kind of shuts down. It's a self-defense mechanism. It's interesting in a sad sort of way. We can write out a question for her and she can read it aloud. But to her it is simply words on paper. They have no meaning. It's kind of like the anatomy books I read in college. . . Yup, there are a bunch of words...on a page...in a book. Don't ask me what they mean.

Last Saturday we took Mom out for our weekly coffee break at Russ. She made it her usual 45 minutes and then started putting on her coat. We always take that as a good sign she's ready to leave. We are astute that way.

When I took Mom back to the home she had no idea where she was.

"Where are you taking me?"

"This is where you live Mom. All your things are here."

I got a blank look. So I took her hand and said, "It's okay, I'll show you."

I'm not even certain she fully knew where she was when we got back to her room. I can only imagine how utterly terrifying that must be. 

I helped her out of her jacket and walked into her closet to hang it up. When I came out she looked at me and said, "Are we going to go somewhere now?"

I told her a couple of times we had just been out for coffee. I got a blank stare. So we sat and I started talking. I told her about things going on in our lives . . .our granddaugther running track, about the new baby chicks on the farm, about the seedlings I was starting in the greenhouse. I sort of blathered on and on.

There was no glimmer of understanding. Nothing. Just a blank stare and a half-smile on her face.

My sister asked me what we are going to do when Mom gets worse. Ummmm. Be there for her. Watch as she slowly fades further away. Not much else we can do. If there were a magic pill, I'd give it to her. But there isn't. All we can do is watch it happen and wait for the next phase.