Category Archives: Neurological Disorders

“While I Still Can”, with Rick Phelps living with Alzheimer’s

Powerful. Thank you Rick!

7 months ago the world lost an amazing man, Ronald Kirkwood

I miss you Dad! I’m not done yet with the people that contributed to your death by any means.

Alzheimer’s and Music: “Conducting” an Emotional Visit to My Beloved, Demented Romanian Soul Mate

Repost from:


After this improvised “concert” I resolved to stop being upset that my “old Ed” was gone forever. I became determined to relate to him on whatever level I could. I rejoiced in the knowledge that I could make him happy.

By Marie Marley


Family caregivers and others caring for those with Alzheimer’s have long known that music is special to these individuals. It won’t stop or slow the progression of their disease, but it can be of significant benefit to them in many other ways.

Music has the power to reach Alzheimer’s patients on a deep level.

Many can sing songs, including most or even all of the lyrics, long after their dementia has progressed beyond the point of recognizing loved ones, dressing themselves, or even remembering what happened five minutes earlier.

Most importantly, however, music can have positive effects on the health and social functioning of Alzheimer’s patients. After listening to music some are clearly more calm, in a better mood and more outgoing than before, which improves the quality of life for both the patient and the caregiver.

Finally, music has actually been found to help those with dementia retrieve some memories their caregivers had assumed were lost forever.

My beloved 92-year-old Romanian soul mate, Ed, had been a university professor of French and a classical music lover. He loved orchestral music, especially that of Bach, Handel, Mozart and Beethoven.

He hated all forms of vocal music, however, and was always telling me he couldn’t stand to see singers on stage “with the open mouth.” Whenever he said that he opened his mouth wide and grossly mimicked an opera star hitting a really high note. I could never figure out how he thought they were supposed to emit sound without “the open mouth.”

At any rate, he’d always enjoyed watching conductors on TV, especially the flamboyant ones. The wilder they were, the more he loved watching them.

Being a former performer who had spent years playing in orchestras, I had tried to convince him that the flashy ones didn’t necessarily obtain any greater result from the players than the more sedate ones, but he never believed me.

When Ed became demented I was emotionally devastated, as are all caregivers at one point or another. My biggest sorrows was that I couldn’t find ways to have meaningful interactions with him. The worst part of it was that he had lost the ability to talk on the phone – something we’d previously done for hours every day.

In person visits weren’t much better. Although he was capable of light verbal exchanges, he wasn’t able to engage in the lively conversations we’d always had. Mostly he would deliver his two long monologues at every visit. They never varied. It was as though this demented man had actually memorized them.

One long monologue was full of praise about how beautiful I was; the other was about how lucky he was that I was visiting him.

I should have been delighted by all the affection and praise in these two monologues, but unfortunately I wasn’t. At that point I wasn’t able to accept his condition. I wanted to talk with him as we did before he became demented – not be simply talked to by him. Not be presented with the same material he repeated verbatim at every single visit.

I wanted my old Ed back. I wanted back the great man I had loved for over thirty years. The one who had been my rock. The man who had always supported me emotionally. Who had always there for me. The man with whom I talked for hours and with whom I laughed heartily during many of our conversations.

I couldn’t accept this new demented Ed with whom I had difficulty connecting, and who usually didn’t understand what I was telling him on the few occasions when I talked about what was going on in my life.

When I voiced my lament to my friends many of them suggested that I look at old photos with him, watch his favorite TV shows with him, or listen to music with him.

I had always assumed that listening to music with Ed would be boring for both of us, but one day I relented and decided to try it anyway since that particular day I couldn’t seem to reach him at all by any other means.

After trying to converse with him for a while and after listening to his two lovely but boring (to me) lengthy monologues, I put on a CD of Mozart’s Jupiter Symphony and started it at the last movement.

I was greatly surprised by his reaction. Almost immediately his eyes sparkled, his whole face beamed, he sat up straight, and moved in time with the music. It was a joy to see him come to life like that.

Then, for some reason I can’t explain, I began ‘conducting’ the music and I did it in the style of his previous favorite conductors. I conducted with both hands, arms flying around, sometimes in tandem, other times going in opposite directions. That made him really smile, which made me smile and encouraged me to keep going and become even showier.

I pretended I had a baton in my right hand, and cued each section of the orchestra when it was time for their entrances. My background in music helped me pull off this whole charade in a convincing and entirely accurate manner – not that Ed would have known the difference.

Ed continued smiling broadly and moving perfectly in time with the music, which really impressed me. Typically those days he couldn’t do anything remotely near perfect.

I stretched out both arms and bounced up and down on the balls of my feet when the music was loud, then crouched down and conducted in a tiny circumscribed area using only my right hand when the music was soft.

When the music was the most pianissimo, I put my left index finger up to my lips in a “shh . . .” gesture while my right hand continued conducting in small circles. He laughed out loud at these motions which, again, inspired me to continue.

I constantly shifted my gaze to the section of the orchestra that was playing the most prominent role at a given moment.

After the final chord I made a gigantic melodramatic cut off movement, remained completely immobile for a few seconds, then bowed deeply – first to the right, then center, then left.

Ed, who had been sitting in the rocking chair during this entire theatrical production, looked positively radiant. After my final bow he looked at me and said in a soft and almost reverent tone of voice, “What you did was so beautiful.”

It brought tears to my eyes. How wrong I had been. Listening to music with Ed had been anything but boring. It had opened up a new way of relating that was satisfying to both of us. It had brought him great joy and consequently brought me joy as well.

After this improvised “concert” I resolved to stop being upset that my “old Ed” was gone forever. I became determined to relate to him on whatever level I could. I rejoiced in the knowledge that I could make him happy. I could make him smile and laugh – things he hadn’t done for months.

Seeing his joy became enough for me, and I decided to continue these performances he loved so much. All of this confirmed what I should have realized all along – music can indeed reach demented people on a deep level.

I invite all of you share your own stories about using music with your Alzheimer’s loved ones.

Also see:

Marie Marley, PhD, is a professional medical grant writer who, over the years, acquired a keen understanding of many geriatric topics, including dementia. . In Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy she describes her remarkable 30-year relationship with Edward Theodoru, PhD, a delightfully colorful yet wickedly eccentric Romanian gentleman – the love of her life. Learn more about their story at Come Back Early Today.

More Insight and Advice for Caregivers

Original content Marie Marley, the Alzheimer’s Reading Room

Reblog: November is National Alzheimer’s Disease Awareness Month

Each year, November is dedicated as National Alzheimer’s Disease Awareness Month. It is an especially significant time for me to reflect on how this disease has changed my life. Anyone who has witnessed a loved one struggle and eventually succumb to dementia is forever changed by this gut-wrenching, heartbreaking, and incurable disease. By its very nature, Alzheimer’s will destroy you as it claims your loved one. It will chew you up and spit you out as you stand by, helpless to stop the progression and inevitable outcome.

The key to emerging from the devastation for me was to find acceptance by determining what I have learned from Alzheimer’s, and then to use that knowledge wisely, both to make me a better person and to help others when possible. I don’t wish Alzheimer’s on anyone, but I do continue to hope that what people find beyond the finality of Alzheimer’s will help them see more clearly and live more purposefully. This is what I have gained from my mother’s journey through Alzheimer’s disease.

Following are a few of the numerous events to be held in conjunction with National Alzheimer’s Disease Awareness Month.

October 31, 2011: Loving and Living with Alzheimer’s Disease

A photography exhibition recognizing the contributions of Alzheimer’s patients and their families will be open for public viewing from 9 to 10:30 a.m. in the Russell Senate Rotunda, Capitol Visitor Center, Washington D.C. The photographs, taken by renowned photographer Judith Fox, chronicle her husband’s journey with the disease and provide a rare insight into caring for a loved one with Alzheimer’s. Registration is required, see link.

November 13, 2011: National Commemorative Candling Lighting

To honor those who have been lost to the disease or currently live with the disease. I will light a candle in memory of my mother, and pray for all those who have fallen to this disease, as well as all those who have been affected by it – caregivers, family, and friends. Click on link to find a local ceremony near you.

November 15, 2011: National Memory Screening Day

If you suspect cognitive impairment, either for yourself or a loved one, early detection is key to pinpoint the exact problem and offer solutions and options as possible. Do it for yourself or a loved one if you suspect Alzheimer’s disease. Click on the link to find a memory screening in your community.

Alzheimer’s is the sixth leading cause of death in the United States and an epidemic is predicted as baby boomers age over the next twenty years. November reminds us all to be aware . . . . . and to learn more . . . . we must find a cure.

Periwinkle ribbon

Golfing reawakens some of dementia’s muscle memories from The Bellingham Herald


Image by turbotoddi via Flickr

By LISA M. KRIEGER – San Jose Mercury News


SAN JOSE, CALIF. – Names, dates, places – such memories are lost to the unforgiving chasm of Alzheimer’s disease.

But when 84-year-old Jim Byerlee stepped up to the driving range at Cupertino, Calif.‘s Deep Cliff Golf Course, he swung with the graceful rhythm of a long-ago athlete, sending the ball skyward in an elegant arc.

“You get lucky sometimes,” said the bemused Byerlee, a renowned U.S. Geologic Survey geophysicist with a PhD from the Massachusetts Institute of Technology.

Life with dementia can feel cloudy, confused, sleepless and agitated.

But once a week, a handful of residents of Belmont, Calif.‘s Silverado Senior Living briefly defy gravity, and their illness, with a simple game of golf. Facts fade, but a fairway is forever.

“I was trying to hit it short,” explained Matilda McNaughton, 71, who exchanged her walker for a wedge, then hit a perfect pitch shot onto a lush carpet of green.

As America ages and the Alzheimer’s population grows, caregivers and geriatricians are working to rethink the possibilities of life with the disease, a catastrophic deterioration of the mind.

There is no cure. No drugs have been proven to do more than slow the progression of the disease, caused by damage and death to brain cells.

An estimated 5.2 million Americans have Alzheimer’s, a statistic expected to grow according to the Alzheimer’s Association as baby boomers pass through their 60s and 70s.

But experts say that outdoor activities – particularly those that were enjoyed in younger years – can make day-to-day life more pleasant, even enriching.

And muscles remember what the mind cannot.

“The nature of the disease is that it doesn’t march uniformly, from cell to cell,” although eventually it affects every aspect of life, said William H. Fisher, CEO of Alzheimer’s Association of Northern California. “I have known patients who could still play the piano very well. In art therapy programs, some people who are pretty shut down will re-engage,” said Fisher. “My grandmother went to same Presbyterian Church every Sunday, sitting in the same pew, and she knew the drill – when to stand up, when to sit down.”

Research has shown that one of the areas of the brain most immediately affected by Alzheimer’s is the medial/temporal lobe, especially the hippocampus, which consolidates and stores short-term memories.

But other types of memory that appear to rely on different neural systems in the brain remain accessible longer, say scientists. These include procedural memory, such as how to count from one to 10, or motor memory, such as how to ride a bike – or swing a golf club.

There are other benefits, say experts.

“With Alzheimer’s, the big behavioral problems that come along with the diagnosis are agitation, present in 60 percent of patients, and sleep disturbance, which is present in 70 percent of patients,” said Jeffery Newell, research coordinator for the Aging Clinical Research Center in the Department of Psychiatry at Stanford University‘s School of Medicine.

“Getting patients outside and doing things like golf, as a general rule, wears them out and exposes them to sunlight, which helps them sleep better at night,” he said. “Our first recommendation to families is to get them outside for physical activity – a walk, gardening, even sewing – to get some sun. It helps keep the peace. If someone is agitated, and throwing the remote control at you, you can’t take care of them.”

The retired executives, engineers and other professionals who can afford to live at Silverado – a $72,000 to $108,000 a year “memory care” facility tucked into a verdant hillside, on a six-acre manicured campus with secure fencing, locked doors and 24 hour nursing – look forward to the Wednesday outings. Five staff accompanied seven golfers.

“They are very accomplished people and we can’t forget that,” said Silverardo administrator Daizel Gasperian. “It gives them a sense of freedom, and dignity. Everything is right. They feel empowered and more energetic. It’s normalcy.”

Two hours before tee off time, Ralph Dinardi waited patiently, a putter in his hand, “like Bing Crosby and Bob Hope.” When not on the course, the retired Westinghouse mechanical engineer likes to practice his putting in his carpeted bedroom, hitting a whiffle ball into a Hula-Hoop.

“I find the game fascinating,” he said, in a written statement he had carefully typed out himself. “I understand the dimples on the balls make them travel almost twice as far.”

Deep Cliff pro Gerry Benton celebrated each shot like it was the 18th hole at Pebble Beach.

“It is deeply satisfying,” said Benton, who as a child grew devoted to his maternal grandmother.

“One rule I made for myself: Take the word ‘remember’ out of my vocabulary,” said Benton.

“I used to go into the ‘golf teaching mode,’ almost reflexively,” he said. I would say ‘Remember we worked on this? Remember how you put your hands like that?’ But, of course, they don’t.”

“Now we start new, every time. It is very much ‘in the moment.’ It’s not five minutes from now. It’s not building on something we did before. All of my attention is there. I’m not thinking about the future, or past,” he said. “It is really refreshing.”

Byerlee grew annoyed when a plastic tee tipped over. “What do I do with this?” he asked. Nearby, Don Thor, sharply dressed in Dockers and topsiders, just sat quietly and watched.

But in the warm sunshine, in the late afternoon of their lives, no one fretted about scores, sandtraps or hitting par.

“I’m a late bloomer,” giggled Annette Hotz, 87. “I really truly love the game.”

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