Aug 24, 2010

Keeping The Love Alive: Unexpected Comfort

By Sheryl Lynn
Alzheimer's Reading Room

Editor Note: Sheryl Lynn is on Blog Talk radio Tonight, go here for the details.

My mother and Sylvia, my father's sister, my last two close relatives, both have dementia.

My mother's dementia came after a head injury.

Sylvia's dementia came after she ripped the oxygen tube from her nose. It's called hypoxia, the state where the body or parts of the body aren't getting the oxygen they need. My aunt's COPD made oxygen therapy necessary to sustain life. The tube is in her nose once more, but the damage has been done.

Before she took the tube away, her memory was perfect. She processed information beautifully. She was still the one the family called the smartest of all four siblings. I'd visit her and would enjoy really good conversations with her when she was age 90+.

Since she took the tube away, she now cycles through the same conversation every minute. She's deaf and in her own world and cannot hear my answers unless I scream them to her, so it's more of a monologue than a conversation these days. Her long term memory is still present, but her short term memory has been largely destroyed. She still processes information beautifully but now is unable to retain almost all of it.

Here's a snippet of a typical conversation:
"Sheryl! You've gained weight! Are you still living in the same place? Are you moving back here? Why don't you move back here? How's your dog? What's her name? Why don't you bring her here? How's your mother? Where is she living? Do you still have her apartment? How's her mind? What town do you live in? Isn't there some historical significance to your town? You've gained weight? Are you still living in the same place? Are you moving back here?......."
I can handle Sylvia's dementia more gracefully than I can my mother's.

Unlike my mother, at this point, she's neither angry nor hysterical. She's sweet and easy to be with until I can no longer tolerate having the same conversation every minute. Whenever I try to redirect the conversation, she cannot hear or cannot focus on what I am saying and goes back to the familiar endless loop.

I stay for as long as I can stay before leaving. I don't leave Sylvia's residence feeling as useless as I feel when I leave my mother's residence. I feel she appreciates my visits, even if she doesn't remember them five minutes after I leave. I feel guilty about my inability to partner with my mother as well as I can partner with my aunt, but I have accepted that as one more thing in an unending series of things about dementia that just is.

I recently found a photograph of Sylvia's brother, my father, in his World War II army uniform. It's a miracle that my dad survived his injuries from the D-Day invasion; he spent the next year of his life in army hospitals, having 13 or so surgeries to repair the massive damage to his body.

He lived the last 26 years of his life with shrapnel the surgeons were unable to safely remove from his lung. My dad maintained close relationships with both his sisters and his brother until his sudden death at age 51.

I visited Sylvia on the 40th anniversary of my dad's death. Even though my last two family members have dementia, I needed to feel connected with them on that day. My mother, I don't believe, remembers my father. She remembers her parents and her younger brother when I mention them to her, but not her husband. I showed her the photograph. She didn't react to seeing it. I brought the photograph with me later that day to see if Sylvia would.

She stared at the photograph. Her eyes filled with tears. I don't remember ever seeing Sylvia cry before. She softly said:

"This photograph brings back so many memories. Your father was so handsome. How long ago was it that he died?"

I was in shock. This was a conversation I didn't expect. I told her this was the 40 year anniversary of his death. I didn't scream my response. She was completely present with me in that moment, and she heard what I said.
"40 years? How old were you when he died?"

"I was seventeen, Aunt Sylvia."

"Seventeen? So young. And how old are you now?

"I'm 57."

"Really? You're 57? And now you've given up your life to care for your mother."
I can't begin to tell you how it felt, to receive comfort from my aunt in that moment. My heart opened up wide, and the tears welled up in my eyes.

I bought a frame for the photograph and left it with my aunt.

I've learned to never underestimate the power of love. As strong a foe as dementia is, I've found there are still precious moments when love still wins. And those are the moments that sustain me. I don't always do the best job fighting the good fight for my mom and for my aunt, but I appreciate the love we still share, more than I can say.

Sheryl Lynn is the author of the upcoming book "The Light Is A Thank You," which chronicles the spiritual journey through dementia she has taken with her mother, Eleanor. She is the host of "Glow With The Flow Radio Show," currently on hiatus.
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Original content Sheryl Lynn, the Alzheimer's Reading Room