To all of the amazing caregivers, family and professional, in hospitals, nursing homes, or elsewhere who have been literally risking their health, their very lives and well-being, this is a tribute and salute to you. May you always be aware of the deep gratitude and admiration so strongly felt by all of us for your dedication, caring hearts and sacrifice to help our nation conquer COVID-19.
Blessing for Caregivers written by Karen Bonnell, Music: Stuart Shelton, from the CD Music Dimensions, available on Amazon.com
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?
"There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers."
No matter which of the above four categories outlined by former First Lady Rosalynn Carter you may fall into, there is little doubt that your life has been affected by Alzheimer's -- either through a family member, friend or spouse. I won't bombard you with statistics, since they are all over the media airwaves, thankfully so! But I want to point out the there are over 65 million family caregivers in the US alone, mostly women, struggling along as the unsung heroes or sheroes, as the case may be, who deal with this disease or others, daily.
I want to let you know that they need your help. Yes, I'm talking to YOU! This is not a disease which will allow cheering from the sidelines. You're going to have to get down and dirty, and maybe take a few hard knocks for the team and almost definitely get out of your comfort zone. If you know anyone who is dealing with Alzheimer's, for heaven's sake, help them out!
Here are some things you can do:
1. Give them a huge hug and a warm, sincere "thank you" for their love and care. Let them know you acknowledge how tough it can be. It will make both of you feel better.
2. Offer practical help: a couple hours of respite care so they can go to a movie or shopping or take a nap. Do their laundry at your house and deliver it clean and folded. Take their children out for an afternoon of fun at the park or zoo to give those "sandwiched" between elder care and child care a break on one end of the caregiving spectrum. Find information about resources available in your local area for support, respite, help and give them to the caregiver with encouragement to help them follow through.
3. Take a walk to end Alzheimer's on Saturday, October 19, when the Alzheimer's Association is sponsoring a national fund-raising event. Click on the Alzheimer's Association link above to sign up. Get your company involved in matching donations raised (if you work for a company so inclined).
4. Help start a Memory Cafe in your community. Here's a "Toolkit" guide for this very worthwhile project and more information about how successful they are and how easy it is to bring better quality of life to those with dementia. There are currently about 80 Memory Cafes around the US, mostly grassroots local efforts, and so very helpful to caregivers and those with dementia. The concept is really taking off in the UK, with excellent support from the government. Here, unfortunately, we have to do it ourselves.
5. Be an advocate for creating dementia-friendly communities, so that caregivers can take their loved ones out to a restaurant, shop, church, or other public event without feeling the terrible stigma that tends to pervade uninformed environments. It isn't that people aren't willing to be dementia-friendly. They simply don't know how. Educate yourself, then educate others. See the excellent resource "Aging, Dementia, and the Faith Community: Continuing the Journey of Friendship" by John T. McFadden, M.Div., Chaplain at Appleton Health Care Center in Appleton, WI)
6. Practice the Mosquito Principle: "If you think you're too small to be effective, you have never been in bed with a mosquito." So, go ahead and be annoying to the decision-makers who can help to fund the end of Alzheimer's. Bother everyone you can think of and be very persistent in your efforts to help caregivers at the end of their rope, dealing with Alzheimer's. You CAN make a difference. Practice being mosquito-like. It can actually be fun, once you get the buzz, er, whine of it!
7. Introduce folks to this website which has a depth of resources, links, tips, advice and sanity-saving humor to help caregivers maintain their own well-being. There are helpful ideas about using music, meditation, aromatherapy, self-care, inspiring books, personalized playlists on iPods with www.musicandmemory.org, and so much more at www.caregiverwellness.biz.
8. Lastly, practice outrageous acts of kindness and caring for the people you love, and maybe for strangers, too. Use the Pay it Forward concept. Reach out and offer your support in big and small ways. Be vocal, be an activist, be a pain in the patooti, but be involved. If we are not, who will be?
"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!
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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