I have written much on this site about the power of music to unlock the memories of those with dementia, about my own experiences using live music with Alzheimer's patients and how music can improve the quality of life for the elderly (and their caregivers!). Refer to the iPod Project and Music and Memory posts on this site. Now, the long-awaited release of the documentary film about this exciting subject is happening across the country. I hope you have the opportunity to see the film in theaters, but if not, it will be available in October on DVD.
If you are a caregiver for someone who might benefit from the inclusion of personalized music, please visit the website www.musicandmemory.org for information about setting up an iPod or other MP3 player with music for your care recipient. You could make an incredible difference in their life and your own with this simple action. Take a look at the video trailer below and consider how good it would feel to bring one you love "alive inside" again with music!
Dr. Bill Thomas, creator of the Eden Alternative and ChangingAging.org website, blogs about his part in the Alive Inside documentary. You'll find his article in the DailyBeast Op-Ed: Treat Dementia With Music, Not Drugs is excellent.
Here is the trailer for the Alive Inside documentary (winner of the Audience Award at 2014 Sundance Festival): or visit the website for times and dates of showings at www.aliveinside.us
I have written often of the benefits of meditation, particularly when combined with music as a guided meditation experience. Now there is increasing evidence from mainstream medical research of what has been understood for thousands of years by wise teachers of many traditions: meditation is great for people!
The truly excellent thing about meditation is that anyone can do it, pretty much anywhere. It is easy, free (or very inexpensive if you choose to buy CDs or download guided versions), is proven as effective as pharmaceutical aids in reducing depression and stress, and has no side effects other than an increased sense of well-being and peacefulness. Click here to see the research done at Johns Hopkins investigating meditation as anti-depressant. What's not to love about that? The Mayo Clinic also published a newsletter article titled "Meditation: A simple, fast way to reduce stress" which gives an great overview of the subject .
Various forms of meditation have been taught, mostly in eastern cultures, and the practice has been growing by leaps and bounds in the west over the past thirty years or so. There have been a number of pioneeers in bringing the practice of mindfulness-based stress reduction (MSBR) to the west, including Jon Kabat-Zinn who founded the Stress Reduction Clinic and Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School. His clinic was featured on the public television series Healing and the Mind with Bill Moyers in 1993. Meditation has such incredible benefits that I believe everyone can find some help by practicing it. In my own experience as a caregiver, meditation and music, combined with fervent and frequent prayer, saved my sanity when it was hanging by a thread. I find it compelling that the list of benefits meditation offers so exactly corresponds to symptoms many (or most) caregivers experience. The only mystery to me is why more caregivers don't use this incredible tool for balance and strength. Which is why I am making it my mission to get this information out to those who need it through this website & blog, by writing, speaking, teaching, and otherwise promoting it. How often is there a perfect solution to so many of our everyday stresses just waiting for us to sit down and get quiet long enough to find its gifts?
If you'd like to explore the ideas and resources for meditation, please visit my Meditation and Music page on this site and also take a look at the ideas for Self-care and Caregiver Resource Store. I will also be publishing a book which further details resources and tools for caregivers: Sanity Savers for Caregivers at the End of Their Rope. You can add your name for an announcement of publication, which is targeted for March 2014. If you would like to read a chapter from the book about the uses of music and meditation, click here. I encourage you to explore the idea of various forms of meditation and find what appeals to you personally. In my 17 years of caregiving, music and meditation were the brightest jewels in the caregiver crown. Try it out. You have nothing to lose and so very much to gain!
"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?
"It is one of the most beautiful compensations of life, that no man can sincerely try to help another without helping himself."
Throughout my life, I have come to know a deep spiritual truth: We are all connected. According to Chief Seattle, "Humankind has not woven the web of life. We are but one thread within it. Whatever we do to the web, we do to ourselves. All things are bound together, All things connect".
To me, this connection called the web of life means that every action we take (or avoid taking) has an impact somewhere, either within our own lives, on other life forms, or upon our environment. This idea has been reiterated by many wise poets, writers, philosophers and theologians, so it is not new. However, I think it applies even more strongly to the relationship of caregiver to care receiver. I'm speaking here of the quality of our caregiving experience, from both sides of the equation.
I've written in this blog of some of the negative consequences caregiving can have, in terms of the caregiver's health, happiness and sense of balance in life. All true. But I want to give some time also to the beautiful compensations, those incredibly precious moments of connection at the soul level, that can be a part of caregiving as well.
Every person and situation is as unique as a fingerprint or snowflake, so generalizing is risky. But I think this is a crucial part of creating a more serene, beneficial experience, so I am willing to go out on this limb.
In caring for my mother, I learned (sometimes the hard way!) that we were incredibly connected -- whether that was judged a good or bad thing was up to me and the perspective I chose. She responded to me on an almost psychic level at times, picking up on emotions and reactions of which I might be totally unaware. She often understood that something was upsetting me, even before I knew it! Though she could not always ferret out the correct reasons, she still related to me from this knowing. I soon realized I could not "fool" her into believing everything was fine if it wasn't. So, I had to clear my own mind and heart before approaching her. I could not hide behind a pretense or falseness. Mom spotted that immediately! She was like a dolphin whose echo-location scanned below the surface, all the way through my innermost self, and saw truth. It reminded me of times as a child when I believed Mom could tell if I was fibbing by looking into my eyes. Perhaps she could -- a mother's own type of radar or a truth-seeking missile.
There were several activities we did to nurture and connect us: music was a powerful device for this. We often sang together, watched musicals on DVD that were her favorites, and listened to hymns or songs by Nat King Cole, Bing Crosby, and other "crooners" from Mom's era. I wish that I'd known about the iPod Project (www.musicandmemory.org and on this site click here) in time to use that with my Mom. But, alas, I learned of it too late.
Another connection was found through flowers, specifically roses -- that lovely flower was Mom's talisman, since she grew a beautiful rose garden which she shared with her friends to uplift and bless them all her life, so it was perfect for reminiscing.
And, lastly, perhaps the most potent of all: simple loving touch. I used gentle, soothing touch with Mom every day -- putting lotion on her skin, gently rubbing her back at bedtime, using aromatherapy oils on her hands and arms, hugging her several times a day, touching her arm or hand as we walked, reaching over to pat her knee as we watched TV or in the car. I used touch along with giving her reassuring words, and loving eye contact. It was this that most often sparked a spontaneous "I love you", or "You're a little sweetheart" (her favorite term of endearment).
Now, in the interest of being completely candid, I must report that I am not a saint. There were days when exhaustion, lack of sleep, worries, distractions, stress or any number of other things got in the way of my being the best caregiver I could be. There were days I didn't much like myself for being tired, short-tempered, upset. I've had to figure out how to forgive myself for not being perfect, for not always knowing how to approach this huge job of being completely responsible for another life. Most days I can do that. I'm still working on it.
I wanted to share this, from my heart, because I know that the one thing caregivers often find in short supply is hope. Hope for a loving positive experience in caring for one they love. My advice is to create that hope and joy one moment at a time. Make this moment count. Use all your creativity and passion to connect through all the senses -- sound, touch, smell, sight and taste. Be present as a healing, loving being right now. Let the next moments and days take care of themselves as much as you can. And find the peace and grace of those beautiful compensations of caring -- one moment at a time.
"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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