Tag Archives: dementia

Capturing the power of music in the midst of Alzheimer’s

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Photo by Jean-Pierre Ceppo/Freeimages

I read a beautiful, poignant story earlier this month about a man with Alzheimer’s who is losing the ability to play the songs he wrote for his wife. These were songs he knew by heart, so he never wrote them down. No one expects a disease like Alzheimer’s to claim what is most precious and sacred to you.

Steve Goodwin, 67, became frustrated when he was unable to play his compositions. That’s when in walked an angel named Naomi Laviolette, a family friend. She plays the piano and asked if Goodwin could help her reconstruct his compositions. She’s recording them note for note so that Goodwin’s musical legacy will be preserved forever.

Goodwin’s wife, Joni, was moved to tears when she heard Laviolette play her husband’s music that she feared was lost. The pair have been married 47 years. She told CBS, “”Losing the songs would be like losing him.”

Goodwin even managed to write a new song, with Laviolette’s help.

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Glen Campbell leaves behind more than a musical legacy

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I was saddened to hear about the death of country music legend Glen Campbell, though he is now free from Alzheimer’s harrowing grip. It’s a huge loss in the music world, where Campbell was much more than just the “Rhinestone Cowboy,” he was an amazing session musician who could play a variety of instruments and his guitar work was phenomenal. He recorded some of the most influential songs of our time, and made them his own.

If you want to see Campbell performing all of his hits with a symphony, check out this YouTube video. He’s in great form here.

Of course, there was the man behind the music who struggled with a dark side that hid under his good guy public image. As Campbell hit middle-age, he became tabloid fodder, with multiple rocky marriages, kids he hardly knew and a bad cocaine and alcohol habit. He eventually got cleaned up and settled down with Kim Campbell, who would be tested when it came to the marriage vows of “in sickness and in health.”

Campbell and his family were very open with the public about his Alzheimer’s diagnosis. It was a brave decision, and if you watch the moving documentary concert film, “I’ll Be Me,” you’ll see the triumphs and challenges that presented itself as Campbell performed with Alzheimer’s on his final tour. His bravery, and his family’s openness, helped renew the dialogue on Alzheimer’s disease, raising public awareness. In turn, that interest helps advocates demand more support for research, care options and caregiver support.

As Campbell dealt with the latter stages of Alzheimer’s, his family kept the public updated, sometimes sharing painfully honest accounts that any of us who have dealt with this heartbreaking disease can relate to. I had a feeling Campbell wouldn’t be around much longer when his daughter Ashley posted this heartbreaking photo on Father’s Day.  It reminded me of my father during the last months of his life, when Alzheimer’s had taken its toll.

Campbell’s family released an album of his final studio recording in June. The title, appropriately, is “Adios.” Farewell Glen, thanks for the memories.

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‘Fragile Storm’ a short film that delivers a powerful message

 

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Image courtesy of Fragile Storm.

If you have not watched the short film, “Fragile Storm,” I highly encourage you to do so.

The film stars Lance Henriksen and is winning awards at film festivals.

I do not want to give anything away, other than to say push through the first half and stick it out through the ending. It’s a powerful, visceral experience.

It’s free to watch online.

If you get a chance to watch, I’d love to hear what you thought about it in the comments below.

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‘Senior ER’ designed to reduce stress for dementia patients

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Photo by Kenn W. Kiser

One of the most frightening calls I received when Dad was in memory care was that he had been taken to the emergency room. Unfortunately, I received several similar calls over the course of the year Dad was in residential care.

The emergency room visits were usually prompted by falls. Even if Dad seemed OK, regulations required the memory care staff to send Dad to the hospital to be checked out. The worst part was that no staff member accompanied Dad. I can’t imagine the confusion Dad must have experienced, on top of his dementia, with the chaos that accompanies an emergency room visit.

Even for a person without dementia, the emergency room is a daunting experience. I’ve only been to the ER  once as a patient, in high school, and it was an exhausting, fruitless experience. I’ve been to the ER several times with others having medical issues, and it is always a nightmarish experience. Why do medical emergencies seem to always happen in the middle of the night? Really though, it doesn’t matter if it is high noon, emergency rooms and hospitals in general seem to be caught in a time warp where it always feels like it’s 3 a.m.

There is so much hurry up and wait. People rushing in and out. Poking, prodding, medications being shoved in your face, or pumped into a vein. So many questions that have to be answered rapidly, and repeatedly. It’s enough to rattle a mentally sound person.

That’s why I am optimistic that some hospitals are reinventing the ER experience for those with dementia. Lutheran Medical Center in Denver was recently profiled for its Senior ER program. They’ve taken half of their emergency room space and retrofitted it to make it a more soothing, less chaotic experience. Everything from mattress thickness to lighting and noise level has been moderated to prevent the onset of delirium, which can hasten death.

The Senior ER has been such a success that people of all ages are asking to be admitted to that wing.

 

 

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Book review: Fractured Memories by Emily Page

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I’ve been following artist and family caregiver Emily Page’s blog, The Perks of Being an Artist, for quite some time now. Her blog documents her father’s battle with frontotemporal dementia (FTD) and her experiences as a younger caregiver as well as being a place for her to share the amazing art she creates.

Page often injects humor into her musings, which I appreciate as she documents the difficulty of the dementia caregiving experience, which I could relate to all too well. I was sad to hear of her father’s passing, but also understood the sense that he was free from such a cruel disease.

Page has written a book about her family’s experience with dementia, titled, Fractured Memories. [Also available on Amazon.] In it, you’ll learn her family’s story, why her father was so special to her, and heartfelt journal entries that document the highs and lows of family caregiving. You’ll also get to view selections of Emily’s artwork, and why the symbol of the elephant is so important.

I highly recommend the book, especially to those who are or who have gone through the dementia experience with a loved one. There are many things caregivers will be able to relate to in the book, from the difficulties in managing those with dementia at home, to the frustration of the sometimes poor care received at expensive memory care facilities. Page accurately documents the range of wild emotions one experiences as a family caregiver to someone with dementia. Of course, everyone’s journey has unique situations, but I think most dementia caregivers will nod in sympathy with the experiences of the Page family.

While there are heartbreaking moments, there is quite a bit of humor, and most importantly, the love Page has for her father shines throughout the book. I love the symbolism of the elephant and how Page was able to use her artistic talent to express various stages of disease and caregiving. I hope you’ll consider reading Fractured Memories and recommending it to other dementia caregivers.

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Aging in America: Crisis and opportunity

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Photo credit: Pierre Amerlynck/Freeimages

Next week, I’m headed to Chicago for the Aging in America conference.

I look forward to attending sessions and meeting other advocates who are addressing the needs of America’s rapidly aging population. My Respite Care Share concept will be presented as part of the poster sessions. I know I will come away with a lot of takeaways, which I will share here upon my return.

When I think about aging in America in the big picture sense, I see crisis and opportunity. There are multiple crisis points that must be addressed, but each of those crisis points is also an opportunity. And while grassroots efforts can’t solve all of the problems surrounding aging, they can make a real difference.

Some of the major aging issues I care about include:

  • Health care: The affordability and quality of health care for seniors must be addressed. There is much Medicare doesn’t cover, such as residential care for those with Alzheimer’s. The outrageous residential care expenses can quickly bankrupt a middle-class family. Many Medicaid programs are overwhelmed, and facilities accepting Medicaid often have long wait lists and sometimes are of substandard quality.
  • Aging in place: One way to avoid the high costs of residential care is to care for aging loved ones at home. However, that comes with its own costs, such as renovating a home to make is safer and more accessible for seniors, and adult children being forced to leave the workforce or reducing their work hours to take care of aging loved ones. This not only has an affect on the caregiver’s current income and health insurance benefits, but their family budget and retirement outlook as well. The mental and physical toll of caregiving that must be considered as well. Community programs can assist with some of these issues.
  • Professional caregiver shortage: As America’s population rapidly ages, the need for professional caregivers to fill in the gap that families cannot cover is also rapidly growing. Because these jobs pay so little, there is a shortage of quality people for these roles. While spending their days caring for others, many professional caregivers cannot afford health insurance for their own families. My mother’s personal caregiver ended up quitting the field because she couldn’t afford to put gas in her car. If we value caregivers more in the job market, we can fill the staffing shortage and reduce unemployment.
  • Alzheimer’s & other dementias research: I care about supporting the research into all major diseases that claim the lives of Americans. My mother lost her life to colon cancer. But my father’s battle with Alzheimer’s illustrated to me the cruel particulars of this condition, and how the entire family is mentally, emotionally and financially impacted. It’s important that we keep funding research efforts and participating whenever we can in trials and other studies that can help find effective treatment.
  • Family caregivers: Last, but certainly not least, I am a strong advocate for more support for family caregivers. Greater financial support is a must, but at the community level, encouraging caregivers to use respite and simply being a good listener for a caregiver who needs to vent are just as vitally important.

What aging issues are most important to you?

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Learning the language of Alzheimer’s

I’m reposting this excellent piece from Marie Marley on how to effectively communicate with those who have Alzheimer’s. It’s really all about being in the moment with that person, and not worrying about right or wrong, truths or untruths. Learning a new communication style is so important because many people with dementia still crave human interaction.

“Adopt the pace of nature: her secret is patience.” Ralph Waldo Emerson Today we welcome award winning author Marie Marley to The Purple Jacket. Yesterday afternoon I walked into Mary’s spacious room. Mary is a woman who has few visitors and who I’ve volunteered to spend a little time with every week. I greeted her, […]

via 5 Tips for Talking With a Person Who Has Alzheimer’s — The Purple Jacket

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