I highly recommend this excellent tool for sanity and survival as a caregiver. It ranks 5 stars on the sanity saver scale :) Please share it with all your family and friends!
Hello all you fabulous caregivers! I've not written in a while, distracted by so many other things they are too numerous to mention. But, I have something truly wonderful and helpful to share with you. I discovered a new app for computer, smartphone and tablet that is soooooooo helpful in reducing stress and creating a calm, relaxed soothing inner peace. It's called, simply, CALM. You can download a free version (on Google play or the Apple App store) and have immediate access to guidance in quieting your thoughts, breathing deeply to still your emotions, and improving your quality of sleep -- and life! There is a more expanded version available for $4.99 a month/year subscription. You can also go to the website and use it on your desktop computer. Check it out at Calm.com. https://calm.com
I highly recommend this excellent tool for sanity and survival as a caregiver. It ranks 5 stars on the sanity saver scale :) Please share it with all your family and friends!
An ounce of prevention is worth a pound of cure.
Hello all you fabulous caregivers! I have been taking a bit of a break from writing the blog for a variety of reasons. But, I didn't even post this year on World Alzheimer's Day (September 21st), for the first time since I created the blog 5 years ago. Why, you ask? Because I just couldn't make myself put forth the staggeringly scary statistics about how often someone is diagnosed or about the impacts to a caregiver's life when AD is diagnosed -- again. It felt so overwhelmingly negative that I simply couldn't do it.
Now, don't get me wrong. There's a lot of positive research happening, some of which I've been writing about since 2012, but it is now receiving mainstream media attention. For example, both music and meditation have been getting lots of attention, with the Veterans Administration now offering mindfulness meditation to veterans with post-traumatic stress disorder. There are more documentaries, more information flowing, more assistance to caregivers -- all that is truly a wonderful change. But, I felt like a voice crying in the wilderness when I wrote about the one thing that daughters caring for AD parents consider perhaps the most distressing of all when they see their loved one deteriorate before their eyes: will I also have this disease? It's a natural and unavoidable question when we see first hand the ravages of the disease.
Until now, the widely promoted information is that Alzheimer's has no cure, and there's nothing much we can even do to slow it down. Grim, right? However, I know there are things we can do to prevent it (check out the rest of this website for that info) and finally, here is some validation that it can also be reversed. Yes, I said reversed.
I discovered a series that is airing online right now, for free. It's called Awakening from Alzheimer's and offers video interviews with a dozen experts in various medical and research fields on all kinds of topics related to prevention and reversal of AD through often simple things that most of us can easily do to improve our health, cognition, and well being. In fact, this series has a huge arsenal of tools and some starling new information to empower us to do exactly that. The subtitle, "Where Alzheimer's meets hope" expresses it perfectly. Hope. We all need hope. This information will serve both you and your loved one with AD. Nothing to lose, as it's free, and everything to gain. Check it out. The series is on Day 4 now, so jump on getting registered.
I wish I'd had even a small bit of this information during my time as caregiver. But, I'm sure happy to have discovered it now. Even though it's too late to help my mother, I believe it can help millions. Please share it. Hope and empowerment are precious.
I just read an article published in The Guardian, titled "One Third of People Born in 2015 Will Develop Dementia" and I felt a shiver go through me - a mix of disbelief, dread and then a goodly portion of righteous anger. I think every single human with a beating heart who looks at the statistics, those cold, easy to ignore numbers, and applies them to the babies being born now can't help but cry out that we ALL need to do more to address this health crisis. There is a virtual tsunami of dementia coming if we don't find ways to stop it. It will swamp our healthcare system and there will be no where to escape it.
Research is, of course, necessary, and finally receiving some significant attention. But we can do more than that. Those who are children or caregivers of parents/elders with dementia know personally the devastating consequences that it can bring -- emotional, financial, in family relationships, in health of the caregiver. So, that multiplies the shivers by quite an exponential factor.
The truth is, there is almost NO one who is untouched by Alzheimer's in some way: whether it be a parent or grandparent, spouse, aunt or uncle, cousin or friend who is losing their personality and memory in excruciating pieces. Julianne Moore recently put a spotlight on the early-onset form of Alzheimer's in her award-winning performance in the film "Still Alice". And there are various groups vying for funds to support the cause in various ways. But I want to talk about what is within our power, each of us, as individuals, to defeat this disease. There's actually quite a lot that we CAN do, aside from shivering in disbelief.
Here are some of the most important, scientifically supported ways you can reduce your own risk of developing Alzheimer's disease:
I'm going to stop here, though I could go on at length. The information is here, on this website and many others. I really implore you all to take your power back and act on that which you CAN control. Type II diabetes is at epidemic proportions, and this is something we can treat and reverse.
So today, in honor of World Alzheimer's Day, won't you make a commitment to your own health and happiness by taking some steps to avoid Alzheimer's yourself? Do it for your own benefit and also for those who love and depend on you. Do it for your children to set a good, healthy example for them so they don't become one of the three people who will develop dementia. Whatever reason inspires or motivates you, just do it!
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!
"You give but little when you give of your possessions. It is when you give of yourself that you truly give." ~Kahlil Gibran
Caregiver's Self-Care Comfort Kit
Caregivers are, by their very definition giving people. They do give of themselves, sometimes for many years, faithfully supporting their care-receiver. It turns out that most caregiving roles are more a marathon than a short sprint, so one has to be prepared with the strength and stamina to continue. Quite often caregivers find themselves battling their own chronic stress, burnout, depression, health problems, relationship challenges, and other negatives to quality of life. It is, therefore, of the utmost importance to find ways to reduce the stress, relax, disengage for a time of respite and renewal. I've spoken of this many times in the past year, even giving recommendations to create a Caregiver Comfort Drawer for those emergencies when you need a little extra TLC.
However, in the previous posts, I didn't include a photo of the kinds of things I was recommending, and a photo is, as the saying goes, worth a thousand words. So, today, I am giving you a glimpse into my own self-care comfort kit, a photo tour, and a list of the types of things I included that worked for me. I realized, especially toward the end of my mother's life, that this comfort kit needed to be mobile, rather than in a drawer at home. That way, my visits to Mom could include pampering for us both.
I hope you will find the suggestions helpful and that some of them will resonate with you. Please do find something to help you deal with the stress levels. It is not being self-indulgent to do so -- it may save your sanity, and perhaps even your very life!
Here is a list of items my comfort kit contains, by category:
Oil Lady Aromatherapy Good Medicine Tin, which includes 5 essential oils, pure organic jojoba to blend them, a lavender mist bottle, and instructions on how to use them in various ways, such as in a diffuser, in the shower/bath, in self-massage, hand massage, etc. These are simply wonderful in all kinds of situations, to calm & balance oneself and reduce stress. I give them my highest recommendation. They also sell a Sweet Sleep Kit with the lavender mist, and lavender oil, along with natural tranquilizer oil, which is great for those nights when sleep eludes you or your care-receiver. I also have a diffuser in my kit. Mine uses tea light candles, so must be attended at all times, but there are electric ones as well which can be set to low temperatures.
In addition to the above, I also included Stimulator Oil and Balancer Oil blends from Oil Lady. I love them for myself and my Mom. Aura Cacia makes two great body creams that have become favorites -- Lavender and Patchouli/Orange are now my standards for moisturizing and make a pleasant bedtime ritual. And, I use some of their bath products when I want a special, relaxing treat. For more aromatherapy suggestions, visit my page: Aromatherapy
Books & Music:
For relaxation, I use a guided meditation called Gateway to Peace by Max Highstein. It is soothing music and words which takes you on a 12 minute journey of renewal. Great stress reducer!
I also use Jon Kabat-Zinn's CD, Mindfulness for Beginners to learn mindfulness meditation. And, as a companion to that, the book Everything is Your Teacher, based on Kabat-Zinn's book, Full Catastrophe Living, offers great insights. I love Wayne Dyer's book Being in Balance which is quite helpful, and can be read in small increments if time is in short supply.
There are many other books and recordings, and I find it most functional to put the music and meditations on an iPod for easy use and storage of a bunch of favorites. I bought an iHome speaker dock for it, which is rechargeable and has its own case for easy portability. That way, others, such as your care-receiver, can listen to, if you wish. I cannot emphasize to you enough the amazing power that music has to affect your mood and sense of well-being. It is a wonderful tool, for both you and your loved one, so please do make use of it in the ways you find most healing and helpful.
A small journal/Gratitude journal
Stationary and envelopes
Colored pens, pencils, sketch pad
Healthy snacks and not-so-healthy emergency chocolate (dark, of course, so I don't feel quite so guilty)
You can get very creative with your comfort kit -- after all it is for YOU, so whatever speaks to your heart and soothes your soul is perfectly valid. I also advise using humor wherever possible and in whatever form you can find. It really will help keep life on the lighter side to have some laughter)
One of the most recurrent themes in eldercare is the highly detrimental effects of boredom & loneliness. This is something experienced by most elders, whether living alone or in an assisted living or nursing home situation. It can even be a problem for elders living with family, depending on the family dynamics.
For family caregivers, this translates into a very difficult issue, creating conflict and emotional upheaval, and, of course, guilt, if their loved one is afflicted by loneliness. Yet there are some bright spots on the horizon.
One pioneer in innovative long term care reform is physician William H. Thomas. He is a self-described "nursing home abolitionist" and has been an advocate for eldercare reform for decades, creating the Green House Project nursing home concept, the Eden Alternative philosophy and training to "deinstituionalize" eldercare facilities by alleviating the "three plagues" of boredom, helplessness and loneliness. The Eden Alternative, which incorporates pets, gardens and children into the culture of nursing home care has an international following and is actively revolutionizing elder care. In addition, this Harvard-trained physician has written numerous books, one of which he turned into a one-man play which he performed to raise further funds for his visionary goals. He is a passionate speaker who champions honoring and valuing elders and aging with dignity, love & joy. He is truly an inspirational, enthusiastic powerhouse of a man! Click here view a video of Dr. Thomas and catch a bit of his spirit and commitment. And here's another recent video with Dr. Thomas visiting a woman in a nursing home and bringing such joy and delight to her with some beloved opera played through headphones for her. OK, hanky-alert on this one. I melted into tears because she reminded me so much of my own mother.
Dr. Thomas and his wife have also developed and built an entire village in Shelburne, NY centered around these concepts, called ElderShire: Creating Well-Being through Living in Community. The need for this kind of revolution is most apparent to anyone who has experienced the soul-less bleakness that is prevalent in the current culture of nursing homes as "storage" for the elderly. Dr. Thomas' lifework offers hope and vision, along with well-designed and researched programs and materials for creating healthier, happier aging in our world. Given the graying of our populations (in particular the baby boomer generation in the US) these are ideas whose time has come and we must implement these changes now to create a better life for both elders and the ones who care for them!
If you should need further evidence of the importance of banishing the "three plagues" of nursing homes, the article which appeared in Science Daily this week supplies it -- titled: Mindfulness Meditation Reduces Loneliness in Older Adults, Study Shows. The study offers verifiable data that the meditation known as mindfulness-based stress reduction (MBSR) reduced both loneliness and also markers in the blood for inflamation response, which are indicated in a host of physcial and neurological diseases, including heart disease, stroke, and Alzheimer's.
Won't you join me in supporting this vision and important culture shift in whatever way is possible? I cannot imagine a more worthy goal than to turn our reality of aging (and let's face it -- no one has found the fountain of youth!) into one of health and well-being and joy!
If you could design the perfect retreat for stressed out caregivers -- a place which was nurturing, and inherently a place of healing -- providing both a quiet respite and tools for coping with burnout and stress -- what would it look like? What features would be most important to you? Would it be close to the ocean or water body of some kind? In the mountains? In a peaceful, rural setting? With acres of forest to walk and lose yourself in natural beauty?
I am not just asking random questions here, but rather shaping an idea, a concept, for just such a retreat. I envision a place where you can completely disconnect from all demands on you -- where there is silence, if that is what you need - without the endless chatter and background noise of TV and radio, but instead, there is soothing, peaceful, de-stressing music available. There would be plenty of natural settings, lots of open space, a chance to be with others or be solitary according to your needs and wishes. There would be time for stargazing, wool-gathering, sitting fireside or poolside according to season.
There would be tailored programs to teach about various proven stress reduction techniques such as yoga, Tai Chi, massage, meditation & relaxation. There would be information and practical tips as to how your diet can support your health (and by extension, that of your loved one for whom you are caring).
There would be gardens growing the plants for these healthy foods (envision blueberries, pomegranates, walnuts, tumeric, lavender, sunflowers, and other antioxidant fruits, seeds, herbs and spices.) You could participate in the gardening if you feel drawn to immerse yourself in that special timeless therapy of nurturing growing plants and getting your hands in the soil.
There would be a counselor on hand -- skilled in helping people reduce stress and find empowerment and clarity. Does this place sound like a perfect Paradise to you? Me, too!
I am currently designing this retreat for Caregivers seeking a chance to renew themselves, learn specific helpful stress relief techniques, exercises, and develop the skills needed to nourish themselves, body, mind & spirit -- to support optimum health and inner peace as they accomplish their caregiving in the most joyful way possible. I would love your input and ideas. It is my desire to make this accessible, not a five-star resort, but more a comforting, cozy, peaceful retreat, available to those who most need it. Please leave your feedback and share your own vision for such a place that it can inform and inspire. This place is for you, the caregiver, and with the right sense of purpose and filling the need, it will become reality. Soon. It's actually there already, just awaiting the foundations under the dream.
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.
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.