12/11/2013 Hope and Help for Caregivers
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? 9/28/2013 Hope and the Humble Caterpillar"We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty." I'd like to share a story about struggle that was told to me years ago by a minister friend and mentor. It touched me deeply at the time and still resonates. It's a message of hope for anyone who is struggling, a ray of sunlight shining through the tiny hole in the cocoon: (Story of the Butterfly as adapted by Paul Coelho) A man spent hours watching a butterfly struggling to emerge from its cocoon. It managed to make a small hole, but its body was too large to get through it. After a long struggle, it appeared to be exhausted and remained absolutely still. The man decided to help the butterfly and, with a pair of scissors, he cut open the cocoon, thus releasing the butterfly. However, the butterfly’s body was very small and wrinkled and its wings were all crumpled. The man continued to watch, hoping that, at any moment, the butterfly would open its wings and fly away. Nothing happened; in fact, the butterfly spent the rest of its brief life dragging around its shrunken body and shrivelled wings, incapable of flight. What the man – out of kindness and his eagerness to help – had failed to understand was that the tight cocoon and the efforts that the butterfly had to make in order to squeeze out of that tiny hole were Nature’s way of training the butterfly and of strengthening its wings. As a caregiver, are you stuck in the cocoon, struggling to burst forth as a butterly, but utterly unsure how to do that? Does the cocoon feel dark and scary and more suffocating than nurturing? It's important to remember that we all have "caterpillar" moments -- times when we simply cannot envision the transformation that needs to happen for us to fly free. Don't give up hope! There's a bit of sunlight shining through to guide you. Have faith that the struggle will be over, you will triumphantly emerge, stretch your beautiful butterfly wings and soar! "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? 8/1/2013 Beginnings and open minds"Beginners and outsiders are open to possibilities and don't make assumptions. By extension, they're often better at finding solutions the experts have stopped seeing." I have a great deal of respect and compassion for caregivers. It is a very challenging role, as I have often mentioned here. One of the reasons is that you have to be a "beginner" over and over, each day, each moment -- caregiving requires looking at your situation with new eyes and a fresh perspective, constantly adapting to changes. As I observe caregivers I find the ones who are able to stay in the "beginner's mind" are usually more successful and less stressed because, as the quote above attests, they are better at finding solutions. Try using "beginner's mind" when assessing your own state of mental, physical, & emotional/spiritual wellness and how to adapt it to your unique relationships and care situation. You must trust your own instincts because you know yourself and your situation better than the "experts" do! There is plenty of expert advice about caregiving on the internet, in books and blogs, from doctors, friends and family -- but you know best how, or even whether or not, to apply it to your own life. Trust that inner knowing. Nurture it with whatever techniques appeal and work for you. My personal favorites for this type of nurturing are meditation, music & yoga, but you may find taking a walk in nature, riding your bicycle or going to the beach may work better. Be open. Seek to do what is necessary to stay in an attitude of being a beginner. You may find it's quite enlightening and exhilarating to keep open to new ideas, feelings, possibilities. There is a certain perfection in the present moment for each new "beginning". "When I let go of what I am, I become what I might be." ~Lao Tzu Are you a family caregiver at the end of your proverbial rope? If the answer is yes, hang on and read on! You have options: 1. You can tie a knot in the end of the rope and hang on for dear life in hopes that some miraculous rescue will occur before your strength gives out and you fall into the abyss of overwhelm, frustration and caregiver burnout below. (I don’t recommend this option, since, in my experience miraculous rescuers are few and I usually go for a more proactive option, anyway. Plus, if you fall and hit the rocks below, it really hurts!) 2. You can tie a noose with the rope and figuratively hang yourself, in essence, giving up your own precious life by giving in to negativity, depression, and despair. By giving up, you shift all responsibility for caregiving to someone else and abdicate your role. (I certainly don’t recommend this option, since I believe whole-heartedly in Life with a capital “L” and that love has amazing powers to heal and keep us whole! But you would be surprised how many people choose this) 3. You can swing on the rope trying to clear the canyon of caregiver destruction beneath you and get on solid ground. (This is a marginally better choice than #1 or #2, but still doesn’t work for me) 4. You can use the rope to make a hammock of support beneath you – a place you can relax, rest and renew your strength, inner resources, and commitment to the caregiving journey. Eventually, your rope hammock can become a rope bridge allowing you to safely navigate across the caregiver chasm and keep your life and sanity in the process. (Now, I admit I am biased, but this is the one I would choose.) This post is an excerpt from my soon-to-be-published ebook, which provides practical tips and gentle self-care and self-nurturing techniques to make life less of a struggle and more of a loving learning experience. If you are tired of struggling and dangling your way through the uncertainties of caregiving, please sign up to receive a release notice when Sanity Savers: For Caregivers at the End of Their Rope is published. Find support for a more balanced, healthy, life-enhancing approach to giving care – a hopeful, positive way that includes you along with your care-receiver. |
About Karen
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. Archives
October 2021
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