Music Sings to the Heart ~ And Mind

When my father heard music in every stage of Alzheimer's, he gyrated his wrists to the music, sometimes "danced" with his shoulders, and always smiled. It was a pleasure to see music giving him such obvious pleasure. Most of Dad's favorites were on cassette tapes he himself had compiled, so throughout his nearly three years in the nursing home, our family searched dusty corners of our basements to find tape players that still worked. We had to replace several in Dad's room, but we wanted him to be able to enjoy his music. At one point, I made CDs of his tapes, but then the CD players we took to the nursing home broke, too. Fortunately, his nursing home had working players we could borrow if need be. And they also had one or two music programs a day we could wheel Dad to.

Here are two Caregiver.com articles about music's benefits for people with Alzheimer's.
Reaching People with Alzheimer's Through Music, by Barbara Jacobs, M.S.
The Healing Power of Music, by Steve Toll and Linda Bareham

A Fall Might Change Everything

Dark red scabs and scrapes on his knees were evidence that my dad fell off his bike with some frequency. He never broke a bone. But one day his bicycle disappeared from the garage. The decision had been made: It was too risky for him to continue riding. My mother, on the other hand, has been hospitalized for bone repairs after falling. She bravely continues walking, but always with someone present or an alert button dangling from a silk cord around her neck. After falling a few times, you lose confidence and live with varying degrees of fear of falling again. Even I, 30 years younger than my parents, hesitate to play tennis again now that my knees have buckled a few times on the stairs. My doctor says if I keep up with my physical therapy knee exercises, tennis should be no problem. Still ... I envision my body crumpling on the court, a fall that would result in new painful problems, perhaps even serious limitations. Fear of falling is real.

Check out a good article, "Fear of Falling: Preventing Falls and Fear," by Sharon Roth Maguire in Today's Caregiver at Caregiver.com. She addresses four major fall risks to reduce. If you take preventive measures, hopefully, as your fall risk lessens, your fear will lessen, too.

Wondering About In-Home Help?

Maybe you worry about your parents' health now that Mom can no longer stand in the kitchen to chop vegetables and fruit. Not to mention she's cooked so many meals in the last 60 years, she's not motivated beyond popping freezer meals in the microwave. Maybe Dad often loses his balance now and has fallen a few times. Plus, does he take his medications as prescribed? You can't be in your parents' home every day, so you wonder what kinds of in-home help are available and how much they cost.

Although you'd have to research and compare specific services and costs yourself, an article by Dr. Anthony Komaroff, physician and Harvard Medical School professor, gives you a foundational understanding of types of in-home help. Think of this article as learning what words to Google. For example, Dr. K explains differences between home health care and private duty care. I especially like that he tells what Medicare covers and what it doesn't. Please read what Dr. Komaroff has to say about services to help older adults remain independent for as long as possible. You'll find it here.

More on communicating with a person with Alzheimer's

Some previous posts have included ways I found to communicate with my favorite person with Alzheimer's, my father. Caregivers can easily become frustrated with a loved one's incomprehension or irrational fears. In this article on Caregiver.com, Malika Brown offers her suggestions as well.

Hilarity for Charity

Yesterday Seth Rogen told a Senate committee he has established Hilarity for Charity to raise funds for the Alzheimer's Association. He sees firsthand how his mother-in-law's early-onset Alzheimer's emotionally and financially drains a family, and he and his wife, Lauren Miller, want to support research to find a cause, cure, and preventive measures for the disease. And Hilarity for Charity raises awareness of this costly disease among a younger generation.

Hear his testimony here: http://abcnews.go.com/Entertainment/seth-rogen-opens-mother-laws-struggle-alzheimers/story?id=22686934

To learn more about Hilarity for Charity, visit their website: Hilarity for Charity

I applaud you, Seth and Lauren!

Alzheimer's Request, Author Unknown

Do not ask me to remember
Don't try to make me understand
Let me rest and know you're with me
Kiss my cheek and hold my hand.

I'm confused beyond your concept
I am sad and sick and lost
All I know is that I need you
To be with me at all cost.

Do not lose your patience with me
Do not scold or curse or cry
I can't help the way I'm acting
I can't be different though I try.

Just remember that I need you
That the best of me is gone
Please don't fail to stand beside me
Love me till my life is gone.

The Question Everyone Asks Families of People with Alzheimer’s

“Does your father still know you?” Sometimes, “How’s your dad? Does he still know you?” Sometimes, “Does your dad still know your mom?”

I felt awkward every one of the hundreds of times I received this question. And I wasn’t sure how to answer. It was as though people somehow thought the pivotal point in Alzheimer’s disease progression was family recognition. As far as I know, no such pivotal point exists in the commonly accepted seven stages of the disease. Or maybe people don’t realize a person with Alzheimer’s might not recognize you one day and call out your name the next. Or perhaps, the question was simply a springboard for expressions of sympathy. All I know is that like a pregnant woman hearing, “Hey, you got a basketball in there?” for the 47^th time, I got tired of the question.

For me, the answer was not yes or no; it was nuanced. And I suppose the whole recognition decline happens differently for different people. My dad’s diagnosis came about 10 years before his death, so he had a long time to lose track of family members. But he never did—in his heart. As he gradually lost vocabulary, sometime in his final year, he lost our names. And sometimes, toward the end of his life, on a bad day, my “Hi, Dad! It’s Jane. I came to visit you,” did not elicit the usual smile. But even on those days, once we had wheeled away from the nurses’ station and gotten knee-to-knee for our visit, he reached out for my hand with his big warm hand, and I sensed his contentment. That’s what I call knowing me.

And when I brought my mother, and she leaned down and kissed his lips, when she caressed his stubbly head and held his hand, he fixed loving eyes on her like a soldier coming home from the war. That’s what I call recognizing my mother. Even on his deathbed when he was barely breathing, he wanted to hold Mom’s hand. When family was with Dad, his sense of “This is right; this is how it’s supposed to be, and I am happy” filled whatever room we were in. Though he didn’t know our names, and sometimes not even our faces, his recognition of his family’s love was palpable.

I don’t know if all people whose loved ones have Alzheimer’s can be confident of a heart connection unto death. As long as I live, I will thank God that our family did receive this gift. Speaking of gifts, another reason the “Does he know you?” question is awkward to receive is that it presupposes that visits will become less gratifying, perhaps even useless. Indeed, different family members might have different levels of sadness and avoidance once the paradigm shifts to unfamiliar one-sided conversations with Dad. This is, however, when family’s visits become precious sacrificial gifts. It’s not about us; it’s about Dad. “Does he know you?” implies dread of the moment when giving to Dad becomes its purest and most joyful.

Perhaps when people asked me, “Does he know you?” I assumed they wanted to know about names and faces and dread, so I didn’t know how to explain. Perhaps I should simply have answered, “Yes.”