Siblings care partners in dementia journey
“I believe that God sometimes gives us things we need to learn for the future. I had an aunt who had dementia. She was in her 80s. So I learned the symptoms, the behaviors, the medicine she took, and all that. But never in my wildest dreams did I think we’d be facing this with my brother.
“He’s 67. It started in 2018. He fell and hit the back of his head without telling anyone. He started getting lost while driving. We took him to a neurologist. The test indicated mild cognitive impairment. About two years later, he had advanced from mild to moderate. He was diagnosed with dementia with Lewy bodies.
“It’s in the beginning stages. He can still dress. He can eat. His humor is intact. The long-term memory is there, but short-term memory is not.
“He lives with me now. We’re not using the word caregiver anymore. The literature says that we’re care partners. It’s a less intrusive term for me. I mean, he’s my brother. That’s what siblings do. That’s what families do. We care for each other. It can be hard at times. But he’s not a burden.
“In a situation like this, you need a tribe, and we have that. His daughters are stepping up. My sisters are stepping up. They give me respite often. It gives me time to regroup. And I have a church family that carries me, too. I’m an elder at the church, and we care for each other. Sometimes I cry during the sermon because it really hits home.
“I know that I need to be kind to my brother. I need to show patience when he can’t think of a word, and try not to finish sentences for him. Or if he’s moody and says something sarcastic, it’s important not to take it personally.
“It’s not always a pretty picture. But my advice to anyone going through this with a loved one is to be intentional and treat that person with dignity and respect. The inexact science of this illness doesn’t assure anything. So while you have the time, while the memory is intact, make the most of it. Create new memories as you go through the journey together.”
— Natalia Guzman
(Note: Natalia Guzman’s brother, Jerry, passed away in November 2022.)
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