"Be excessively gentle with yourself." ~John O'Donohue
This is undeniably, incredibly hard. I was a caregiver for my mother for 17 years, and we weathered multiple hurricanes and hospital stays, pneumonia, falls, and other assorted emergencies, but never a pandemic. During the last months of her life, my mother was in a nursing home and they had an outbreak of flu so bad that they closed to everyone in order to contain it. As irony would have it, I caught the flu there and was then unable to go back to visit my mother for 8 of the longest weeks of my life. So, I do have the very deepest empathy for any family member who is separated from their loved one during this crisis. Unable even to say goodbye. It's heartbreaking, deeply distressing and emotionally devastating. My tears have flowed with those of family members sitting outside the nursing home window with their loved on on the other side.
I cannot really imagine how difficult it is to navigate this crisis, but I would say to anyone caught in this cauldron of fear, pain, helplessness -- keep your focus on what you CAN do -- express your love and be present in any way possible. Use a phone call or video chat or a greeting card or photo held up to a window -- whatever works in your particular circumstance, do your best. And know in your own heart that you are doing the best anyone can in an impossible situation. Try to keep yourself calm and centered by any means -- prayer, deep breathing, meditation, yoga are all valuable helps. Know that others are with you in spirit, praying for your strength and safety. Be at peace. Be excessively gentle with yourself.
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!
As if caregiving isn't complicated and stressful enough, life tends to throw emergencies into the mix, to challenge us even further. You know what I mean -- the random hurricane, flood or fire. These are tough to cope with in the best of times when you are strong, able-bodied and have your health. When you are caring for someone who does not meet these criteria, the emergencies of life can threaten to swamp you in both figurative and literal ways. There are some things that you can do to minimize the confusion and heightened stress that such an emergency brings. Here are a few ideas to help you cope:
1. Plan Ahead. This sounds simple, but takes thought, time and energy. It is vitally important to the outcome of a potential emergency situation. I suggest creating a portable, easily accessible Emergency Book. I used a large zippered three ring binder with pockets and a handle (available in office supply stores). This one book contains all vital information including insurance policies, health records, legal documents, current list of prescriptions & supplements for the care receiver, insurance cards, contact information for health care providers, friends & family. Because we live in a hurricane prone area, I also have a separate hurricane/disaster preparedness book, which is kept in the same location as the Emergency Book. The benefits of preparing these ahead of time are clear & dramatic when you need them in a hurry. You can grab it and go to any doctor's appointment, hospital emergency room, or mandatory evacuation shelter, for instance, and have everything you need all in one place. I included Medicare and insurance cards, copy of power of attorney and health surrogate papers, Living Will, etc., so there would be no question of authority. I also put together a "Hospital Overnight Bag", with all of the necessary items for care and comfort and kept this with the Emergency Book. You can vary the plan according to your specific needs, but the more comprehensive, the better. I kept the actual prescription bottles in the bag, since I used daily pill dispensers to give the medications. That way, if there were any questions, I had the original containers to rely upon.
2. Create a family plan of action. This is similar to number 1, but inclusive of your whole family. You already have contact information in the Emergency Book, but you need a plan of evacuation, what to do if you are separated, a pre-arranged meeting location away from your home, or other similar plan. There are online tools available for this purpose, and many social networking sites are now used to maintain contact and update others as to your status. However, if a storm were to cause widespread power and cell service outages, this would not be a viable means of communication. If your loved one requires care in a special needs shelter, for example, that must be arranged in advance. Also, remember to consider your pets in your planning. Just having the plan in writing, agreed upon by family members and neighbors (if you wish) and knowing what you would do in an emergency can bring tremendous peace of mind when an emergency arises.
3. Maintain a sense of normalcy as much as possible for as long as possible. It's very important for an already vulnerable adult (or child with special needs) to feel calmness and protection from their caregiver. One major mistake, easily made, is to leave the TV on with reports of storm projections and damage. That just ratchets up the tension and uncertainty and will eventually produce a sense of panic in those who are susceptible. It's better to quietly and calmly follow your plan in making preparations to evacuate (in the case of a storm or fire). Try to keep your own sense of equilibrium by using soft, calming music, aromatherapy, and deep breathing. They really do work, even, and perhaps especially in times of crisis.
I just read a blog post by Gail Sheehy, author, speaker, caregiver advocate, and general mover & shaker. Her book, Passages in Caregiving: Turning Chaos into Confidence, is featured on the Books Page of this website. Her post is titled, "What can bring caregivers out of the house before they go nuts?" Yes, the title caught my eye. It's a wonderful post about a newly formed Caregiver Coalition in Jacksonville, Florida, which recently had a huge Expo for the estimated 150,000 family caregivers in the city. It was a phenomenal success and the various agencies which form the Coalition are seeing how underserved this segment of the population actually is, and how starved for information. Sheehy's blog is calling us to action to form similar coalitions all over the country to support the 65 million caregivers -- yes, that number is right! And, the real consequences to the health, mental, physical & emotional, for these unpaid family caregivers is astronomical. She cites stress, anxiety, depression, alcohol & substance abuse, high blood pressure, obesity, diabetes, and the list is endless, as major issues for the 45-55 age group that forms the Boomers caregivers brigade.
I absolutely and heartily agree! Having experienced some of these problems first hand, and realizing how deep this need goes, and how many millions of people are affected, if we don't act now, and really grab this tiger by the tail, finding real, practical and accessible solutions, we are going to have a bunch of nutty, stressed out isolated folks on our hands!
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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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