The RCI is a service unit of Georgia Southwestern State University in Americus, Georgia, and combines advocacy, education, research and service in supporting caregivers by promoting caregiver health, skills, and resilience. The focus is on helping caregivers cope with chronic illnesses and disability across the lifespan. This includes such a wide range (everything from autism to cancer, Alzheimer's to traumatic brain injury) that to get a full representation, I suggest you take a look at their caregiver resources page: www.rosalynncarter.org/ which features over 100 links to information and assistance sites. The programs of outreach include the Georgia Care-Net Coalition, which represents 12 regions around the state and serves as a voice for caregivers, the REACH program for Alzheimer's caregivers providing training and support in partnership with other organizations in 17 states, and Operation Family Caregiver, which provides free, confidential support, counseling and training for military family caregivers in-home, or via telephone or Skype. If you or someone you know could benefit from this program, call for information at (229) 931-2034.
The Summit featured keynote speaker Elizabeth Dole, who spoke eloquently on behalf of the million (yes, million!) military caregivers who are valiantly trying to cope with the approximately 725,000 veterans who are returning from the battlefield with both visible and invisible injuries and disabilities, including post-traumatic stress disorder (PTSD) and traumatic brain injury (TBI). The urgent need is overwhelming the services the Veteran's Administration is able to provide, leaving so many families in dire straights. Elizabeth Dole has created a foundation to assist these many military family caregivers in coping with the crisis: Elizabeth Dole Foundation website
With Elizabeth Dole's inspiring and passionate words still reverberating in our hearts, there was a brilliant presentation by Gregory Fricchione, MD, Associate Chief of Psychiatry and Director Benson Henry Institute for Mind Body Medicine at Massachusetts General Hospital and Professor of Psychiatry at Harvard Medical School. Dr. Fricchione's presentation was simply amazing in its depth, scope and brilliance as he related very technical evidence of how the very evolution of the human brain over 120 million years influences those suffering PTSD and TBI. He communicated this complex information in such an accessible way and with humor and compassion that I found it truly engaging. I couldn't miss the comparisons of battlefield stress disorders with some of the same symptoms exhibited in the chronically stressed caregiver. Dr. Fricchione put it in context that was understandable and also hopeful. His funniest points were about the greater adaptability of slime mold (as compared to the human brain) and also, his opinion that the canine species was infinitely superior in unconditional love. (I think I agree with him about dogs! He even showed a video clip of his dog meditating - definitely a higher species!) I was vastly reassured that such brilliant researchers are bringing light to the issues we are facing. If you'd like more about this, his slide show may be found through a link on RCI's homepage for more Summit info. Without his charming quick wit and personality, it just isn't the same!
I was so impressed with the excellence of the programs and the caring compassionate hearts of the people involved. I met people from all over the world who are each working in their own way to support caregivers. There was such an atmosphere of hope, collaboration and cooperation and the convergence of politics, education, public support, private corporate sponsorship, recognition of excellence, community outreach and caring hearts -- I have never seen the like before. How could one not be inspired and uplifted?
"If music is such an important aspect of people's lives from the time they are born, why is it that it doesn't really occur to us, as a society, to provide people with music when they can no longer do what is necessary to provide it for themselves?
Imagine: You are lost in a world where words no longer make sense, when you only dimly know the faces around you, if at all (including beloved family members), and indeed where you may not remember your own past at all. Your entire world has shrunk down to a dim, lonely place behind a dark curtain of dementia or depression. Then, someone approaches you with a smile and friendly manner and places headphones on your ears and begins playing a song that you danced to with your sweetheart at your wedding. The music immediately connects you to that pleasant past memory, to who you were at that time, forming an acoustic bridge that can span what words or touch may no longer be able to do. Your eyes brighten, your toes tap, your lips curve in a smile and the words to the song come out of your mouth, which had forgotten how to speak. The light in your soul begins to peek out from behind the dark curtain. You may even kick aside your walker and do a little dance.
Is this fiction or fact? Well, in a 2008 project which provided 200 ipods to residents in four nursing homes in New York, it is fact. And Dan Cohen, then man behind the project and founder of Music and Memory, is seeking to make it fact for millions more! Mr. Cohen has pioneered the program Music and Memory with the goal of making personalized music the standard of care at all 16,000 nursing home facilities around the country. If the viral Youtube clip of Henry, a 94-year-old nursing home patient who is transformed in an astonishing "awakening" to the music on the provided ipod, is any indication, this is an idea whose time has most definitely come!
Mr. Cohen is using the power of the media to bring this transformative technology to all the elder care advocates, nursing homes, family caregivers, and others who can use it to transform sadness and isolation to toe-tapping joy and song with the implementation of a personalized playlist for people with dementia. Cohen and his team are at work on a documentary (Alive Inside - www.aliveinsidemovie.com) which features Henry and many others whose lives have been returned to them in part, by this power of their musical past and its impact on the brain. Music and Memory and the Alive Inside documentary have been featured on numerous media, such as NPR, New York Times, USA Today, CNN, MSNBC, ABC, and The Doctors, and have completed a successful campaign on crowdsource funding site Kickstarter.
Speaking as a daughter, a singer, and a caregiver, this is the most wonderful use possible of the gift of music to help our loved ones reconnect to their past, to bring them joy in the present, to make their lives so much richer and happier -- and all for the price of an ipod and some tunes and a caring person to put them together. The Music and Memory website has a wealth of resource material to allow you to get involved at whatever level you choose -- from how to set up a playlist for a loved one with Alzheimer's at home, to running a donation drive for gently used iPods which they will refurbish for use in nursing homes. Donate in whatever way feels right to you -- as a volunteer, by giving an old iPod to the cause, with financial support, and by spreading the word (and the music) on your social media such as facebook and twitter. This is a chance to positively affect literally millions of lives. Don't miss out!
How many angels can dance on the head of a pin? Of course, there is no answer to that philosophical question. But, if you ask how many caregivers are dancing the complicated, unchoreographed dance of the challenges of caregiving, the answer is, by current consensus over 65 million. That is 65 million unpaid, family caregivers in the U.S. alone. To wrap your mind around that, it means that roughly one third of Americans are caregivers! One in three people in the U.S. are performing some duties to care for an elder or disabled person!
And I read an even more astounding projection for new cases of Alzheimer's internationally for the next 40 years (source: The Journal of Alzheimer's Disease) -- there will be an almost unimaginable, 115 million new cases of Alzheimer's-type dementia by 2050. This projection doesn't just boggle the mind, it makes it run away screaming in denial!
However, on a more positive note, there was a recent article synopsis in Science Daily, titled: Link Between Brain Insulin Resistance, Neuronal Stress in Worsening Alzheimer's Disease in which the authors of the study found some promising research on insulin resistance (diabetes) in the brain, which interferes with neuronal pathways. In essence, they are postulating that Alzheimer's is basically a metabolic syndrome, even going so far as to call it Type III Diabetes -- and that just makes sense to me. The more reading I do, the more apparent (to me) it becomes that it's all interconnected. Picture a giant, multi-headed underwater monster popping above the surface in different places so it appears to be separate, yet just beneath the surface, it is one. So (this is my own opinion, not the study) the obesity crisis, diabetes (insulin resistance), metabolic syndrome, inflammation and Alzheimer's may be different faces of one disease. If the monster only has one heart and it can be targeted, it stands to reason that would make it easier to defeat. This strengthens my own resolve to continue to explore and share information & self care techniques to help the caregiver slay the dragon of disease.
If, after further detailed neurological research, it turns out that all these are indeed aspects of one multi-faceted illness -- essentially a result of being out of balance, then it actually provides even more reason to use the tools that promote optimal wellness in our lives -- and ultimately, finding our balance in mind, body & spirit may be the healing, holistic approach that will provide keys to an eventual cure. I certainly find it hopeful in that it empowers us in our own healing process. That's good news that can perhaps make the alarming statistics fade away, replaced by a healthier, brighter future with far fewer dancing the caregiver dance.
One of the most debilitating injuries a caregiver can face is a back injury. You are already under great stress in taking good care of your loved one, and it often involves lifting, turning, moving, or supporting them in transit (not to mention lifting equipment such as a wheelchair, walker, etc.) in and out of vehicles or transfers from bed to chair or shower. In light of this, it makes perfect sense to strengthen your back as much as possible and protect it against injury. Yoga is one of the most useful practices for this particular need. And it has excellent side benefits of relaxation, stress relief, and promoting a sense of wellbeing.
Many of the stretches and postures used in yoga can help to keep the back supple and strong. There are many excellent videos available if you just don't have time to spare for a class, or can't get coverage to be away for that time. (There really is no substitute for a good yoga teacher and class, but a video is certainly better than not protecting your back at all!!)
The video that I found most useful is one by Rodney Yee, entitled: Yoga for Back Care. It is available on DVD from Gaiam.com at the following link: Yoga for Back Care
There are also several other products you might find helpful. One is created by the Mayo Clinic, also available at Gaiam.com. Mayo Clinic Wellness Solutions for Back Pain
It is crucial to find a method of stress relief and body care that feels good, is right for you, and works -- so that you will be encouraged to keep doing it. For me, that is yoga. Try one of these, or some other yoga video or class, if that's more appealing. Just do something proactive today for your own health, wellness and stress relief.
There are tons of studies about the effects of caffeine on human health and psyche and you can prove or disprove almost anything if you find the right one to support your position. But I tend to believe in my own intuitive being that caffeine will ultimately be proven beyond any doubt to be good, in moderation. One of the most recent studies I came across looked particularly at the effect of caffeine on the brains of older adults, ages 65 - 88, found that those with higher blood levels of caffeine avoided onset of Alzheimer's during the 2-4 years of the study. Granted, this was a small test group of 124 people, but there was also a similar study done in 2006 on 400,000 Alzheimer mice that showed very strong correlation with the blood levels of caffeine creating protective benefit from a whole host of diseases!
This is potentially great news for the estimated 10 million Americans who are in one of the stages of Alzheimer's (using the newly expanded definition which includes mild cognitive impairment). Caffeine certainly isn't a cure, but it is nice to know you can enjoy a morning cup of coffee and feel you are doing something good for your health!
Here's the detailed report on the study titled "High Blood Caffeine Levels in Older Adults Linked to Avoidance of Alzheimer's Disease" found in Science Daily from June 4, 2012.
Karen is a compassionate, enthusiastic student of life, who cared for her mother for 17 years. She brings her insights, compassion, experience and desire to share knowledge and healing to this ongoing conversation with others on the caregiving path. If you are caring for a parent, spouse, friend or other loved one this site offers sanity-saving tips, open-hearted self-care ideas, and an open forum for discussion, connection and sharing resources for the journey.
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