Tag Archives: Alzheimer’s disease

The Essence of Music Therapy


Where words fail, music speaks. Hans Christian Andersen

I have to be  honest, I’m a frustrated singer.  Oh, I’ve tried to sing in a chorus and of course, just like you, I’ve sung a few tunes in the shower, loudly I might add!  Music is the essential human experience and Marlon Sobol has a passion for music. As a music therapist, Marlon’s passion for music transcends, staff, residents and administrators alike.

As Manager of the Music Therapy Department at Schnurmacher Center for Rehab and Nursing in White Plains, NY, Sobol implements programming that include drumming, improvisation, dancing, bell chiming,song writing, singing, anmarlon-still-6-color-1d listening with verbal processing to meet the clinical and cultural needs of the facility’s in house and local community.

According to Sobol, “residents spend an average of 5 to 8 hours in front of a TV which is not good for anyone.  Music alleviates  agitation and encourages moment. And music is the path in the wilderness of dementia.”

Now Marlon has created a program called “Keep On Moving TV for Seniors” so caregivers and facilities will have an “easy to access resource”, that will greatly enhance the quality of life for all of our later years.  Listen in and learn how Marlon is creating “Healing Ties” and changing lives through his music. The rhythm is going to get you!

To learn more about “Keep On Moving TV for Seniors” and to support Marlon’s work visit:   https://www.generosity.com/fundraising/keep-on-moving-tv-for-seniors–2

Marlon Sobol’s work as both musician and music therapist have been featured in “DRUM!”marlon-still-3-color-1 Magazine; in “Preserving Your Memory” Magazine;  in the Journal News, and on Armand Dimele’s, “The Positive Mind,” and NPR’s “Soundcheck” with John Schaefer. 

 

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Is There A Connection Between Dementia and Dirty Air?


Today we welcome a contribution from freelance writer  Jess Walters to “The Purple Jacket”

Why Caregivers Should Monitor Air Quality

Caring for a loved one is a heavy burden, and you’ll want to do the best you can for them. Some of the duties you will perform as a carer are quite typical, such as feeding, shopping and cleaning. However, there are other less obvious things to consider when looking after someone. A topic that isn’t usually at the forefront of people’s minds is the quality of air.

Scientists believe that there may be a link between polluted air which is high in magnetite, and dementia. People with dementia have elevated levels of magnetite in their brains. Therefore, it is vital that the air is clean for yourself and your loved one. You can do this by using a portable air purifier, and by purchasing high quality filters for your HVAC, which will screen smaller particles in the air.

A silent buildup of tiny magnets in the brain sounds like science fiction, but researchers say it’s reality for adults who live in cities, thanks to air pollution. Now, they’re trying to find out if high levels of magnetite, a particle found in dirty air, can cause Alzheimer’s. They’re concerned because Alzheimer’s patients also have lots of magnetite in their brains. It’s not yet clear if elevated brain magnetite levels are a cause or an effect of dementia, but magnetite is hardly the only air pollutant, and there’s no question that cleaner air is better for your health. Here are some tips for clearing the air for yourself and your parents.

Keep an eye on local air quality

Local industries, pollen, dust storms, and wildfires can create health hazards for seniors, especially those with allergies, asthma, and lung diseases. Most local weather forecasts now include information on daily air quality, including the types and amounts of pollutants such as ozone and dust. You can also visit the Environmental Protection Agency’s real-time national air quality map at AirNow, enter your zip code or and see local air quality and tomorrow’s forecast.

When the pollutants and pollen are high, it may be best to stay indoors or at least avoid exercising outdoors. You may be tempted to put on a mask and get on with outdoor activities despite the dirty air, but health experts warn that thick, tight-fitting masks that can filter out pollution particles may also make it harder to breathe. Read the rest of this guide here.

“Jess Walter  is a freelance writer and mother. She loves the freedom that comes with freelance life and the additional time it means she gets to spend with her family and pets.” Jess Walter <jesswalterwriter@gmail.com>

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Love In The Land Of Dementia


Love is the only force capable of transforming an enemy into a friend.  Martin Luther King, Jr.

I will be the first one to admit that my caregiving journey did not include the special trails and tribulations when caring for someone who has dementia or Alzheimer’s.   For many families, a diagnosis of dementia is an ending. For Deborah Shouse, it was a beginning, “My mother taught me how to celebrate and appreciate what we have right now.” Through her mother’s dementia, Deborah discovered compassion, deepening love, and increased connection with her mother and her family.

Deborah Shouse is an author and dementia advocate. Deborah knows first hand that finding the connection with a love one afflicted with dementia is a challenge millions of people face. Too often, people living with dementia are entertained instead of engaged.  In this episode of “Healing Ties” Deborah talks about the differences between Dementia and Alzheimer’s while sharing her love and passion for those who care for someone with this insidious diagnosis.

Listen in and learn how Deborah is creating “Healing Ties” all around us by finding love in the land of dementia.

2016-12-22-3Love in the Land of Dementia offers hope to family members, friends, and care partners of people who are living with memory loss. Strong, fluid organization and tender writing distinguish this purposeful and compelling read, which is filled with practical suggestions, compassionate support, and unexpected insights.   Visit Deborah on line at Dementia Journeys 

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Having a Dementia Friendly Holiday


Christmas is the day that holds all time together. Alexander Smith

The Holiday Season and can be both fun and stressful.  But how does a family approach the Holiday Season when caring for someone who has Dementia or Alzheimer?

2016-12-22-2Deborah Shouse is a dementia advocate and the author of Connecting in the Land of Dementia: Creative Activities to Explore Together .  Through her own personal experience of caring for her Mother, Deborah has a keen understanding of the importance of preparing for a dementia-friendly holiday  so that everyone can be safe and secure while enjoying the holidays.

Deborah offers some sage advice on how to choose holiday activities; explaining the needs of the person living with dementia to family and guest, creating a quite space available for down time while in the midst of the festivities.  My personal favorite is Deborah’s suggestion that a family member or friend take turns being around the family member with dementia in order to answer a quick question or to just make them feel comfortable a large gathering of people.

When memory loss is first detected in a loved one or friend, it can be troubling for the person affected, but also for the entire family and friends.   Too often, people living with dementia are entertained instead of engaged.  Connecting in the Land of Dementia shows us how to engage and connect with people who are living with memory loss and dementia.

On this version of  Healing Ties,  Deborah provides us with some timely tips to help caregivers and their caree’s have a dementia friendly holiday season.

Listen in and learn how Deborah Shouse is creating Healing Ties all around us!

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December 22, 2016 · 1:31 pm

Creating A Memory Cafe Directory


Try to learn something about everything and everything about something.  Thomas Huxley

The month of November is always an exciting time as we look ahead to Thanksgiving and the Holiday Season.   November is also significant for family caregivers as November is designated as National Family Caregivers month.  November is also designated as Alzheimer’s Disease Awareness Month.  Family Caregiving  and Alzheimer’s disease  go hand in hand, it is proper that they both share a month together.

Our caregiving journey did not include the insidious disease of Alzheimer or dementia. However thousands upon thousands of family caregivers care for a family member or friend  who struggle with memory loss.   The common denominator for all family caregivers is to find safe places where you and caree can enjoy life as much as a day in caregiving will allow.

As I have come to learn, those who suffer from memory loss often find it difficult to  go to loud and unfamiliar places.  We know isolation starts to occur when we feel there 2016-11-01-2is no viable option, rather, it’s just easier to stay home  than to do deal with the obstacles of the unknown.

But what if there was a safe place for those incurring memory loss and their caregivers?

KalendarKards is creating a Memory Cafe Directory where people can socialize, listen to music, play games and other activities. They can simply enjoy the company of those with these things in common.  A Memory Cafe is a safe and comfortable space and great place for individuals with Alzheimer’s or any of the dementia’s. But it’s not just for them, the memory café for their caregivers as well.

The Memory Cafe Directory was started by KalendarKards and is operated by KalendarKards, LLC .  Memory Cafe’s are not everywhere, but they are growing quickly.

On this episode of Healing Ties, Dave Wiederrich CEO and Co-Founder at KalendarKards provides us with a detailed description of the Memory Cafe Directory and how you can start one of your own.

 Listen in and learn how Dave Wiederrich and KalendarKards are creating Healing Ties all round us!

By creating a comprehensive national directory for Memory Cafe’s, KalendarKards believe they can help raise awareness of the value Memory Cafe’s bring to families.  I happen to agree!

 Join us in Chicago for the First National Caregiving Conference on December 2nd & 3rd.  Visit Caregiving.com for further details “

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Chris MacLellan is the host of Healing Ties Radio and the author of “What’s The Deal with Caregiving?”  ©WholeCareNetwork. 

 

 

 

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A review of Still Alice: Watching a Loved One With Alzheimer’s


We welcome back guest blogger Maria Alice with her review of Still Alice: Watching a Loved One With Alzheimer’s

Alzheimer’s disease is an illness that affects its victim at the core of their being. Memory and different mental functions are compromised in those who develop the disease, and ultimately it changes them in profound ways. The award-winning film, Still Alice, centers on the hardships that come with early onset Alzheimer’s and how they affect the victim and the people that surround them. In Still Alice, family, friends, and caregivers experience life with a loved one who, one day, may or may not even remember who they are.

Alice Howland, played by Julianne Moore in an Oscar-worthy performance, is a linguistics professor – a true creature of words, ideas, and thoughts. After Alice encounters a period of memory loss and confusion, she is diagnosed with early onset Alzheimer’s disease. We follow her life as the disease gets worse and those around her start to become frustrated and lose hope. Still Alice shows the uglier and more difficult stages of Alzheimer’s as a person with it goes through stages of memory loss and personal deterioration. As the disease progresses, it begins to rob the victim of their dignity. Alice quickly loses the ability to perform daily functions and maintain personal responsibility and safety. Still Alice, still available on DTV and Google Play, vividly illustrates how one person can lose their former selves inside their mind and how their body can become a mere shell of who they once were.

In a common real world situation, Alice’s family becomes her caregivers. Her husband John (Alec Baldwin), her daughters Anna (Kate Bosworth) and Lydia (Kristen Stewart), and her son Tom (Hunter Parrish) all deal differently with the diagnosis of their loved one. The family accepts Alice’s condition in ways that reflect their situations and their levels of fear and insecurity about this genetic condition. The fact that they must react to her condition both as a loving family, caregivers and potential carriers of the trait adds a distinct layer of tension to the plot.

Directors Richard Glatzer and Wash Westmoreland portray the disease and its path of deterioration with precision and empathy for all concerned. There are days when Alice seems like she’s who she was before the diagnosis and days when she cannot find herself. Repeated imagery of waves on the shore captures the incisive feeling about the nature of the disease – a thing that comes in waves with no two quite the same but with the same impact. However, it is the human resolution that stands. Alice learns to live in the moment and savor life.

Still Alice describes a painful descent from a lofty, comfortable, and productive life to one of searching for a most basic connection to the self. Alzheimer’s is a disease that robs one of past, present and future by breaking the connections with life events, time, and people. With effective use of imagery, photographic effects, and themes, Still Alice creates moods and very relatable scenes of the descent from high-powered professional existence. It follows a person who must struggle to overcome confusion in the simplest tasks and disconnection from the lives that matter so much.

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March 5, 2016 · 10:00 am

Thursday are always ‘Hug A Caregiver Day!’


Caregiving can sometimes be hard:

But Hugging a Caregiver is easy!

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 My Show, ‘Be A Healthy Caregiver’ is on Hiatus while TLO is going through Radiation Treatment, we will be back on the air in December!

 However all of our episodes of ‘Be A Healthy Caregiver’ are archived for your listening convenience by clicking here! 

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Alzheimers Dementia Wristband Hospital Project


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Gary LeBlanc

Join us on Tuesday August 27th at 1:00pm (est) for a conversation with Gary LeBlanc from Common Sense Caregiving, founder of the Alzheimer’s Dementia Wristband Hospital Project and Margaret Doerr, CEO of Nursing at Brooksville Regional Hospital in Brooksville, Florida.

To listen to our show live, simply click here! 

After enduring 3 nightmares hospital stays with his dad who was diagnosed with Alzheimer’s, Gary recognized that there needed to be a better way for staff to recognize the special needs of his father. 

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Margaret Doerr

On today’s show, we are going to talk with Gary  and Margaret about how one, simple, identification bracelet can go a long way in providing comfort and security for patients, caregivers and a hospital staff. Yet this is more than just putting a bracelet on an Alzheimer’s patients:  this project is about training, educating and recognizing the special needs of Alzheimer’s patients to an entire hospital staff!

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Gary’s project is a prime example of how Caregivers can have an impact on polices and procedures because Caregivers are always the ones in the trenches!  Through our conversation with Gary and Margaret, we will all learn how to ‘Be A Healthy Caregiver!’.

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The Universal Symbol for Alzheimer’s

Can’t listen to our show live…NO Worries!  All our shows are archived for your listening convenience by clicking here! 

To learn more about Gary and the Wristband Project click here! 

To learn more about Brookfield Regional Hospital click here! 

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Dementia and Rummage Bags: Yes!


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Join me on Tuesday August 13th at 1:00 pm on ‘Be A Healthy Caregiver’ on Blog Talk Radio, as we visit Seth Gillman and  Kaitlyn Henderson from Passages Hospice.  Passages Hospice has developed this wonderful program simply called ‘Rummage Bags’ to help dementia patients (and their caregivers) cope!    Whether you are a man or a woman, we’ve all had the experience of rummaging through a bag, a box, a pocket, a drawer, looking for the elusive item that just seems to be out of our reach. Yet when we find what we are looking for, there is that moment of elation!  To listen to our show live, simply click here! 

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Seth Gillman

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Kaitlyn Henderson

We will have a delightful conversation on Tuesday about this terrific program, while chatting about the great work Passages Hospice does in many communities throughout the Midwest. We will also have some terrific tips for Caregivers who are caring for a loved one with dementia.   Through our conversation with Seth and Kaitlyn, we will all learn how to ‘Be A Healthy Caregiver!’ 

To listen to our show live on Tuesday at 1:00 pm (est) click here!

Visit Passages Hospice online by clicking here! 

Can’t listen live…NO Worries!

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All our epidsoes of ‘Be A Healthy Caregiver’ are archived for your listening convenience by clicking here!

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‘Guys Who Care’


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The article below was written by Diane C. ‍Lade Staff writer of the South Florida Sun-Sentinel.  Diane has given me permission to share this article with my readers.   Thank You Diane for including us in your article and drawing attention to ‘Guys Who Care’.  Job well done!  dlade@tribune.com   

 

Men assuming roles as caregivers need special support!

Do you ever get used to changing the diaper of the woman who once diapered your babies? How do you deal with not knowing how to cook a simple meal when you used to be a company CEO? What should you say when your wife, afflicted by Alzheimer’s disease, asks you to have sex every time you visit her in the nursing home?

Like anyone tending to a family member with a debilitating medical condition, male caregivers face hard challenges. But experts are beginning to recognize men may face those challenges in different ways than women and require different kinds of help.

“There are some men who are going to feel uncomfortable talking about their issues in mixed [company],” said Dale Bruhn, 88, of Delray Beach, who runs the men-only support group offered by the Alzheimer’s Association Southeast Florida Chapter.

Bruhn knows about the walls men put up from personal experience. He began suffering mock heart attacks from the stress of caring for his wife at home for seven years; she was diagnosed with Alzheimer’s when she was only 60. He kept insisting he was fine, a trait shared by many male caregivers, Bruhn said, raised to believe that boys don’t cry.

Finally when his wife’s nurse browbeat him into joining a support group, Bruhn was surprised he was able to share his pain and fear — in part because, by chance, the group was predominantly men.

“Women are not afraid to talk or express their opinions, and that can be frightening to men who are new to Caregiving. Sometimes, men-only is a good thing,” he said. “Many aren’t used to being domestic helpers and need help coping with the new demands they face.”

Just a decade ago, less than a quarter of caregivers were men. But that has been rapidly changing, with more women working and more men accepting nurturing roles like being a stay-at-home dad. About 35 percent of people who call themselves caregivers are male, according to the 2009 Caregiving in the USA study of about 1,500 people, from the National Alliance for Caregiving and AARP. The numbers are higher among those in the workplace, who tend to be younger, with about 45 percent being male, the study found.

Yet there still are few resources or programs targeting men, something some experts think should change.

For example, men caring for sick or elder relatives “tend not to share with their colleagues or supervisors why they might need time off,” National Alliance CEO Gail Hunt said. “Having something in the workplace that reaches out specifically to men might be helpful.”

 Hospice by the Sea, which offers caregiver support in Broward and Palm Beach counties through its Aloesea program, will be looking at men as part of its new study on workplace Caregiving, funded by United Healthcare.

The organization so far has not developed any guys-only programs. But one formed by default several years ago, when five men and only one woman signed up for a short-term, grant-funded Hospice by the Sea cancer support group in Boca Raton.

The woman soon dropped out “but the five men formed such a bond and felt so comfortable with each other, they came every week,” said Stefanie McKee, the hospice’s senior director for program development and analysis. “Men don’t talk about these issues when they get together on the golf course.”

McKee noticed how often the participants coped and communicated through humor, something women do far less often. “It made me think that men might be more likely to come to an all-male group,” she said.

The Alzheimer’s Family Center in Margate has noticed about 20 percent of those who come for caregiver counseling are men now, as compared with 10 percent a decade ago.

And the local Alzheimer’s Association chapter, which sponsors Bruhn’s gatherings, is experiencing a similar trend: about 38 percent of support group participants this year are men, up from 33 percent last year.

Jamie Brodarick, the chapter’s program service manager, said more men-exclusive groups might be added. And she already is trying to recruit more male facilitators; Bruhn is one of two at this point.

“We know that men tend to approach Caregiving somewhat differently than women. They are more pragmatic. Their primary concerns are having the right doctors, managing medications,” Brodarick said. “Women are more concerned about the socialization and emotional well-being of those they are caring for.”

 Homewatch CareGivers — a Denver-based home health company with one franchise in Miami-Dade and two pending for Broward and Palm Beach counties — in September started a just-for-men advice website to tap into a potential new client base. Home-watch President Leann Reynolds said franchise partners had been reporting they were getting more calls from caregiving sons, husbands and grandsons.

The site, MaleCaregiver.com

Community.com  , serves as a discussion board where topics include health conditions, care options and taking care of yourself. Recent posts include one from a Vietnam veteran wanting advice about caring for his wife who was partially paralyzed by a stroke, and a son who was heartbroken when his lonely father started dating while caring for his Alzheimer’s-stricken mother.

Experts say one reason male caregiver numbers are growing is that more men today are identifying with the term. Another is that more older gay men, who once worried that admitting they cared for an elderly parent or partner would lead to questions about their sexual orientation, are coming out of the closet.

Chris MacLellan, coordinator of senior services for the SunServe LGBT social service agency in Wilton Manors, has been nursing his longtime companion Richard Schiffer, through cancer for two years. MacLellan did the same earlier for another man he loved deeply until his death six years ago.

“What I knew from my experience from the first time is that I didn’t have an outlet. In most cases, women will ask for help but men will be more reticent. Me, I was caught off-guard changing a diaper,” MacLellan said.

He now dedicates his free time to giving comfort and self-care advice through his blog and an Internet radio show at ThePurpleJacket.com . While his efforts are definitely LGBT- and male-friendly, Caregiving is “something that has no gender or orientation boundaries,” he said.

PHOTOS BY CARLINE JEAN/STAFF PHOTOGRAPHER Dale Bruhn, 88, of Delray Beach, cared for his wife, Norma Bruhn, for years after she was diagnosed with Alzheimer’s disease at age 60. He runs a men-only support group.

Chris MacLellan, left, coordinator of senior services for the SunServe LGBT social service agency in Wilton Manors, has been nursing his longtime companion, Richard Schiffer, through cancer for two years.

 

Caregiving resources

Elder Helpline: Can link to local support groups. Call 800-963-5337.

National Alliance for Caregiving: Resource and research. Caregiving.org

Family Care Navigator: State-by-state online resource list. Part of nonprofit National Center on Caregiving.

Caregiving.com 

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