Last week, a caregiver told me something that she considered so horrible that she could only say it in a whisper.
She told me about her husband and his Alzheimer’s journey. He had just moved from a memory care community to a nursing home. She wasn’t pleased with the care he was receiving. Their kids lived across the country and had stopped visiting. He spent most of his waking time agitated and riddled with anxiety. In the past, her presence had decreased the anxiety, but now nothing seemed to control it–except a high dose of a sedative that knocked him out and made him a “zombie.”
She had a sense of dread every time she pulled into the parking lot of the nursing home. She made a deal with herself…30 minutes minimum, but she’d feel better if she stayed 40. She hated seeing how much he was struggling. She felt sick to her stomach before she even walked into the building. She’d lost 25 pounds in the last 6 months.
She asked me how much longer it would be. It took me a moment to process this. She wanted an estimation of how much longer he’d be alive.
“I want him to go soon,” she said in a whisper before I had a chance to answer.
Then she looked around–just to make sure no one else heard.
For lack of a better response, I said “I understand” while putting my hand on her shoulder.
To be fair, I wasn’t sure I could understand. I wasn’t in her shoes…and what I really wanted to convey was that I wasn’t judging.
Then she went into defense mode.
She said that she and her husband had a decade of happy years after he starting showing dementia symptoms. They traveled. They volunteered. And then they couldn’t.
She told me she hadn’t heard his laugh in a year. They hadn’t had a real conversation in at last 18 months.
And she was ready for it to be over. She was sure he was as well.
But it felt awful to say it out loud.
It’s not a great place to be (wishing for your husband to pass away), but she felt he was at peace with his God. She felt it was time.
Although she felt this way, she said to me several times, “I must sound like a horrible person”
No, she didn’t. She didn’t sound like a horrible person, and she certainly wasn’t a horrible person.
Maybe you have a loved one in the end stage of dementia. Maybe you feel this way. Or, more likely, you feel this way sometimes but at other times don’t know how you’ll deal with it when they die. You can’t anticipate what emotions will wash over you when they’re gone. Really gone.
Loving someone with dementia is intense. The feelings that come along with it are intense. Sometimes you want it to be over. Sometimes you never want it to be over. You want to let go but you want to hang on. As a spouse of a man with dementia recently said to me, I want to freeze time and also fast forward time.
And all of that is okay.
It’s raw and it’s real and it’s okay.