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Carol's Story

Rewards of Caregiving

I have cared for Mom for three and one-half years. For the first year and one-half, I also cared for Dad. He died August 24, 2009 just three weeks shy of their 66th wedding anniversary.

Caring for both of them was challenging. I often said that aging parents are the gods' revenge for our teenage years. Teenagers and elderly both want their independence and the right to make decisions about their own lives.

Mom was in moderate stages of dementia when Dad died. He worked hard to care for her and keep her at home. He had been primary caregiver for two years before I started helping.

He would sing to her – the favorite was Irish Lullaby. Mom loved hearing those words, "Too-ra-loo-ra-loo-ral, Too-ra-loo-ra-li, that's an Irish lullaby."

One day I helped Mom get cleaned up. Then we went in the room where Dad was watching television. Dad said, "You smell nice. I like clean old ladies." Mom never lost a beat and replied, "And I like dirty old men."

Since Dad's death, Mom's progression seems to have become more rapid.
She has gone through many phases.

There was a non-stop talking phase. Challenging is an understatement.
One day I asked, "Do you ever stop talking?" She quickly replied, "Yes," took a deep breath and added, "And then I start again."

One Saturday morning, in the middle of one of her streaks, she asked, "What shall I do?" (A common question with dementia.) I replied, "You can start cleaning the bathroom, or there are dishes to put in the dishwasher, or vacuum the living room, or…" Mom interrupted me with, "I wish you wouldn't talk so much."

Almost to the exact date of the two year anniversary of Dad's death, Mom became fully bedridden. She was already incontinent and had been having mobility difficulties, but not able to get out and about was new. She can no longer feed herself, is fully incontinent, and requires much more intense care.

Every moment is worth it. She still has a quick wit and brings a lot of joy and laughter to my life. She eats well. One day I told her, "If you keep eating so much, you are going to be a fat, old lady." She responded, "Who are you calling old?" I love those moments especially because it is so unpredictable if she will be able to speak at any given time. She goes between very lucid moments to seemingly in her own far off world.

One day I found Dad's Bing Crosby CD and put it in for Mom. She was quiet and seemed to enjoying listening to the music. Then track eight began. Mom slowly reached her weakened arm upward, taking hold of an imaginary hand. She brought it down and kissed it gently. She began moving her feet and arms as she "danced" to the music.
The tears filled my eyes as I, too, remembered Dad singing those words, "Too-ra-loo-ra-loo-ral, Too-ra-loo-ra-li, that's an Irish lullaby."

What are the rewards of caregiving? Knowing I helped Dad stay at home where he wanted to be and am doing the same for Mom. Knowing I am making a difference in my mother's life. I cannot beat the dementia, but I can give Mom a quality of life where she is treated with dignity and respect and valued as the wonderful human being she is. And, most of all, keeping memories alive.

*Irish Lullaby – words and music written in 1914 by James Royce Shannon (1881-1946)