I believe we all have the right to know what is in our food. Especially when there is evidence that GMO's are carcinogenic and can also be linked to neurological diseases such as Parkinson's, Alzheimer's and autism. Please share this video widely if you also want to know what's in your food. Just label it!
"The most important hour is always the present. The most significant person is precisely the one sitting across from you right now. The most necessary work is always love."
Caregiving is an act of love. One of the most powerful tools we have as humans caring for other humans is the gift of our attention. To be completely in the present moment with your loved one through eye contact, touch, facial expression -- is a sacred and special experience, deepening joy through connection.
I encourage all caregivers, whether professional or family, to find ways to be fully present by sharing an event or activity with this very intentional, conscious focus. It can be as simple as watching a sunset, playing with a kitten, eating a treat together. The quality of the experience and the satisfaction inherent comes from engaging all the senses with attention. If the present moment shared is good, life is good!
This is a beautiful tribute to those who have been lost to Alzheimer's -- some were a surprise to me. There are also some who are currently fighting the battle against this devastating disease. We need to keep the 5.4 million people in the U.S. and their approximately 15 million caregivers in our hearts. We need to remember those who forget and those who are caring for them - all the lives touched by Alzheimer's.
Please watch and share to raise awareness...
I decided to repeat a prior post, because it is more pertinent than ever for caregivers trying to manage care for a loved one in the hospital, nursing home or rehab facility. Please feel free to share your own hard-won experiences via the comments so that we can all benefit!
One of the most challenging caregiving experiences can happen, ironically, when your loved one is admitted to someone else's care: ie. the hospital, rehab or nursing home. In my own 17-year caregiving journey, my mother was only admitted to a hospital three times, two of those during the last 7 months of her life. Each time it was very traumatic (for both of us!), but what I found so stupefying was the total inconsistency of the quality of care. The difference was dramatic, both from hospital to hospital and even from floor to floor of the same hospital! It covered the whole spectrum between basically decent to almost criminally negligent. From these experiences, which I will not share in gruesome detail, I found three nuggets of truth to be evident:
1) Hospitals are not good places for the elderly, and are especially bad for those with any type of dementia. Anytime someone is in pain or physical distress, it clouds their thinking capabilities, and if drugs are given, they can intensify this effect. Same goes for the changes in routine, unfamiliar surroundings and upset in sleep patterns that happen in hospitals. In fact, according to a recent study, a hospital stay can actually be a causal factor, triggering dementia in the elderly, if delirium is present during the hospitalization. The article in Science Daily explains the long-term effects and also gives some ways to help avoid delirium and consequent cognitive decline: Delirium and Long-Term Cognitive Decline in Alzheimer's Patients Linked in New Study
So, for the sake of all concerned, take whatever steps are possible to minimize or altogether avoid hospital admissions. For example, during one emergency, I waited with my mother for over 5 hours in the hospital ER waiting room, only to find there were still several people (and hours of waiting) ahead of us. Because I knew Mom was in a weak and debilitated condition, getting worse by the minute, I called the local walk-in clinic. They had no one waiting, took her in within two minutes of arrival, examined and treated her in less than an hour. She improved dramatically by the following day, when I was able to get her in to see her regular doctor. We thus avoided what would have likely been an unnecessary hospitalization. That was a very valuable lesson. Obviously, you have to use best judgement as to the severity of the problem. It's always best to call 911 if you have a true life-threatening emergency, but consider the risks against the benefits for less threatening circumstances.
Another time, we waited over 11 hours in the emergency room, much of it with me sitting on a cold hard floor next to her gurney because they didn't "allow" family to be in there. I had to explain repeatedly that her mental status required my presence, since she couldn't answer questions or give a medical history. They eventually brought me a chair when they realized I wasn't going away, no matter what they said. (This was less an act of kindness than that they just got tired of tripping over me). This marathon ER experience happened in 2003, and I truly hope that hospital staff has become more aware of and sensitive to the needs of elderly dementia patients to have their caregivers present in these very upsetting and frightening situations.
2) The elderly are at risk for falling in many cases, and that risk increases when they are in a hospital setting. In fact, my mother's first fall, after living with us for nearly 8 years without a mishap, was when she was in the hospital. She was disoriented, on IV and yet managed to get out of bed to try to get to the bathroom on her own. She fell, but thankfully was only banged up a bit and didn't suffer any major trauma or broken bones. It was a wake up call for me! So, my advice would be to stay with your loved one as much as possible, and if you can afford it, hire extra care so that someone is in attendance when you cannot be there. If you can't afford this (it's quite expensive!) you can arrange for friends, church members, and/or other family members to volunteer so that there is adequate coverage. You will need to see to personal hygiene, such as brushing teeth (or cleaning dentures), shaving, putting in and removing hearing aids, and sometimes even bathing your loved one, depending on the staff (or lack thereof) in the particular facility. But don't expect the care to just happen. It won't. Doing it yourself insures that your loved one's basic needs are met and they can be comfortable. I also believe it helps them tremendously to remain "in touch" with you, quite literally.
3) And lastly, do whatever you must to "catch" the doctor while making rounds. Be sneaky, lie in wait. This may require being in the hospital room by 7 am or earlier, since many doctors do rounds before starting an office schedule. Ask the nurses what time a doctor normally sees patients and make your ambush plans accordingly. You want to communicate, question, understand treatment plans and diagnosis/prognosis. A new trend in so-called "care" involves having a "hospitalist" -- a doctor that is specifically assigned from a practice to care for all hospitalized patients from that practice. This makes absolutely no sense, since the attending physician may know nothing about the patient, having never seen them prior. If there is dementia or even just normal disorientation resulting from the injury or illness requiring hospitalization, the patient can't give vital information to assist with treatment or diagnosis, nor can they, in the case of Alzheimer's, even answer the most basic questions. This becomes downright dangerous to the patient, and I'm sure is frustrating for the doctor, too. Hence my advice to lie in wait if you have to, in order to ask questions and interact with the doctor in person. It is my firm belief, after witnessing some harrowing hospital horrors, that everyone needs an advocate to intercede on their behalf. As an advocate, you need to be very clear and specific in asking about any drugs that are being given, or considered, and what the risks vs. benefits are, as it can be a devastating ordeal if inappropriate medications are ordered. Case in point: Anti-psychotic drugs, such as Haldol (halperidol) are all too often given to Alzheimer's patients with sometimes deadly results. I have personal experience of this with two elderly relatives. The consequences were tragic.
There is an excellent blog post on this very subject at the Mayo Clinic Alzheimer's Caregiver Newsletter, which I will share here: http://www.mayoclinic.com/health/antipsychotics-and-alzheimers/MY02213/
Forewarned is forearmed, though it is such a shame to have to think of a hospitalization in terms of doing battle. Unfortunately, that is often the true nature of care in our present system. To be fair, there are still a few rare, white knights disguised as doctors, riding in with the best ideals, and highest standards. But, they are sadly more fictional than real these days. If you are fortunate enough to find one of these very special health care professionals, give thanks, hold on and don't let go!
As a caregiver educator, yoga student and teacher, I was intrigued by a UCLA research study last month. It concluded that a simple, low-cost yoga program can enhance coping and quality of life for caregivers. ~Angela Lunde, author of the Mayo Clinic Alzheimer's Blog
I was really delighted to see that Angela Lunde, who writes an excellent Alzheimer's blog for caregivers at the Mayo Clinic endorsed a study that I've known about for quite some time. In fact, I wrote a blog post about it in March of 2012, which I am re-posting here in its entirety, since it still very much applies:
Stress, Meditation and Self-Help, Oh My!
I just posted a link on the resource page for a new study at UCLA Semel Institute for Neuroscience and Human Behavior which had very promising results on a small group of caregivers. They showed marked improvements in both cognitive function and lower levels of depression after using Kirtan Kriya yoga meditation for a 12-minute daily session over an 8 week period.
The control group used only soft, relaxing music, without the chanting meditation, and showed significantly less of a result. This is pretty amazing that it's possible to have a strong positive impact in 12 minutes a day with something that is basically free and easy to do. I'm intrigued by this, since I have been a student of yoga and meditation for many years. Yet, while I was in the midst of the worst stress of the caregiving role, I strangely abandoned those precious tools which would have helped to keep me in balance. Why? Self-sabotage? Perhaps. Burnout? Quite likely. When you find yourself in a prolonged, stressful situation the choices you make may not be rational because of the combined effects of fatigue, depression, ill health, frustration and guilt. The toxic mix of emotions can undermine even the strongest psyche, wearing it down like flowing water wears rock over time. Think, Grand Canyon, here. Caregiving stress is very similar in that it happens gradually, over a period of time, and you might not notice that your coping skills are deteriorating -- or, worse, you might notice and still not be able to make a good decision to rectify the situation. It's that sense of powerlessness, helplessness in the face of the situation, that is so significant and the point at which this entire website/blog is directed.
If you find yourself in that "hanging-on-at-the-end-of-your-rope" place, and seriously considering letting go as an option, this lifeline is for YOU! I am putting together a series of short video meditations just for caregivers, so that you will have some guidance to do your daily 12-minute work toward finding balance, calm, and even your own inner peace again! Stay tuned.
Back to the present, I realize that I never completed the video meditations for caregivers, and so there is no time like this moment to get that done. I hope to get my own version of the Kirtan Kriya posted shortly and will give you the link here on the blog. I purchased a copy from the Alzheimer's Research and Prevention site and have used it, but to my musician's ears, it has some definite flaws (yes, I am getting over my perfectionism. Just give me another decade or two and I should have it mastered). I also purchased their Alzheimer's Prevention Toolkit, which introduces the 4 Pillars of Alzheimer's Prevention(TM) which focuses on diet and brain-specific nutrients, exercise for mind & body, stress management and spiritual/psychological well-being. There is a very thorough up-to-date white paper available for download at the site below: For more information or to purchase, go to www.AlzheimersPrevention.org or email them at email@example.com
Link for white paper:
I am simply amazed that this type of yoga meditation can produce verifiable results in only 12-minutes a day over an 8-week period. I think you will find the white paper quite enlightening in terms of current research. The information presented there is well-documented. These practices are something that virtually anyone can do, and as Angela Lunde points out, very low cost. They may pay very high dividends indeed if they can prevent or significantly postpone Alzheimer's Disease or help to improve cognitive skills. Frankly, I see no downside in trying them, if you feel the motivation. The possible benefit is life-changing.
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!
For those in the Naples area, there's a special opportunity tonight to view the acclaimed documentary I Remember Better When I Paint, with special guest & co-director Berna Huebner. Hosted by the Naples Art Association, the film, narrated by Olivia de Havilland, is the first international documentary about the positive impact of art and other creative therapies on people with Alzheimer's and how these approaches can change the way we look at the disease.
The event will be held tonight, February 17, 2014 at the Naples Women's Club, 570 Park Street in downtown Naples, beginning with a reception at 6 pm, the film screening at 6:30 pm and followed by a panel discussion with several experts in the field. This is free to the public. For more information, please visit the Naples Art Association website.
Love is our true destiny. We do not find the meaning of life by ourselves alone - we find it with another. ~Thomas Merton
I want to share with you a couple funny stories about my Mom in the nursing home. They are proof that love never dies and is our true destiny, as Thomas Merton attests.
I arrived for a visit with Mom to find her sitting in the TV common area holding hands with the gentleman in the seat next to her. As I walked in and gave her a big hug and kiss, I asked how she was. She smiled a very sweet, slightly sly smile and glanced at the man beside her saying, "I'm doing fine. I've got a man!" I cracked up, since she was 91 at the time and because it reminded me so much of the Gershwin lyrics from the song I Got Rhythm: I've got my man, who could ask for anything more? She then expressed concern about whether I had a man of my own (I assured her quickly that I did, lest she suggest something I didn't want to contemplate).
Mom and this very kind man continued to be good friends and companions until death parted them, and it always warmed my heart to see them holding hands and smiling at each other fondly.
The second story happened earlier, soon after Mom arrived at the home and before she met her gentleman friend. I was at work, in a frantically busy office, when my cell phone vibrated, indicating a call from the nursing home. In a bit of a panic, fearing some kind of emergency, I grabbed the phone and rushed out to the parking lot to get a good signal, leaving a lobby full of people waiting, none too pleased about my disappearing act.
The social worker from the nursing home quickly allayed my fears and then told me she had an "incident" to report. Well, that sounded pretty ominous. An incident? She further relayed that while waiting for the dining room to open, my mother had been sitting in a small alcove watching TV when another resident, a man, kissed her. I think I laughed out loud at this point feeling very relieved and repeated, incredulously, "Kissed her? Do you mean a peck on the cheek kind of kiss or were tongues involved?", I questioned. She assured me that it was fairly innocuous, according to her interview of the two people involved and witnesses. She further reported my Mom did not seem distressed at all by the kissing "incident" and indeed could not recall it. Well, I've had kisses that were less than memorable, but I suspected it was Mom's Alzheimer's causing this lack of recall. As I breathed a sigh of relief, I explained to the harried woman that I was not upset by this breach of manners, and actually, if this were the worst "incident" that ever happened that would be excellent. In fact, I continued, "My Mom may have even been the kiss-er instead of the kiss-ee, in this case, given her propensity for flirting." Sometimes you just have to look at the lighter side of life and love.
With all the Valentine's Day hoopla yesterday so fresh in mind, it feels good to know that love can bring us joy at any age and in any circumstance. So get out there and hold hands with someone you love. And make your own kissing incident. Love is our destiny, indeed!
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?
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.