Dementia Chronicles (part 4)

Dementia–the gift that keeps on taking. Every time I think we’ve got a few things figured out, we find out there’s so much more that we don’t know about this nastiness. The fact that no one else knows either is no comfort at all! Some of the things you expect to lose. Some of the things…well, you just never see them coming. 

It was a great weekend. We took an extra day off to roam through the mountains on the way to see our loved one and other family members. We were excited to see her new placement in a fantastic memory care unit. Advised to come after lunch since that would allow our loved one to remain on schedule for most of the day, we showed up when and as instructed.

Routines are important. (for all of us!)

We arrived and were met with great joy, got an opportunity to see the new digs, and were then led to a private sitting room off the main unit. We had a wonderful visit! The conversation lagged a bit at times as we ran into memory blocks or losses, but we quickly diverted and changed subjects when needed. Finding new ways to share information is tricky these days, but we made it work. I took pictures and they turned out looking ready for framing. Everyone looked happy and healthy.

FACT: You can’t always see dementia…even when it feels like you really ought to be able to do so. That is a deceptive gift.

As we returned to the unit, our loved one was excited to see the new storyboard lovingly created by her daughter loves to scrapbook. It is gorgeous! Filled with family photos and facts from happier times, storyboards help identify each resident’s lodging place and gives others on the unit an opportunity to get to know people in ways they can no longer share for themselves. Our loved one stood there smiling, pleased, and said she remembered some of them. It was a gift for all of us as we took our leave for the day.

We returned in time for breakfast the next morning and found that we were surprise guests again…with no memories of the day before, but it was ok because we were able to have real conversations again. Moments of lucidity are a gift that none of us take lightly anymore. We shared the photos from the day before as proof that we had indeed been there and were rewarded with smiles and shoulders shrugged with confusion about why she didn’t remember. Another photo was taken to document this visit, as well. The storyboard was a brand new surprise…again…and I breathed a prayer of thankfulness for the delight it brought and asked God to let it always be a source of joy.

My check-in call today wasn’t as joyful. It was painful as we once again went down the questioning pathways that led us to where we are. I did my best to bring comfort that God is still in charge and is in the process of providing even when our loved one finds it difficult to accept and can’t remember why this provision is even necessary. I was grateful that just talking it out and being heard seemed to help calm things down. Ending our call on as high a note as possible, I still texted the following to a friend afterward.

Had the hardest realization today… She said, “I just need something to look forward to!”–and I realized that Dementia has stolen this gift from her. When you can’t remember what happened, you also can’t recall what is supposed to happen…and it just broke my heart. 😭 What a horrible, horrible thing this stuff is!!! What she can’t recall, she fills in with error, so she feels abandoned. No memory of our visits this weekend at all today.

Some days it is as hard to be the forgotten as it is to be the one who is forgetting.

Comfort us all, Father God, as we do our best to keep honoring You and our loved ones even as we lose them, as they lose themselves, and as they eventually lose us all before they’re actually gone.

Remind us that in You nothing and no one can ever be truly lost, God.

We need to remember that. We desperately need to remember that.

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