"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.
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.
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 firstname.lastname@example.org
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.
"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
One of the most debilitating injuries a caregiver can face is a back injury. You are already under great stress in taking good care of your loved one, and it often involves lifting, turning, moving, or supporting them in transit (not to mention lifting equipment such as a wheelchair, walker, etc.) in and out of vehicles or transfers from bed to chair or shower. In light of this, it makes perfect sense to strengthen your back as much as possible and protect it against injury. Yoga is one of the most useful practices for this particular need. And it has excellent side benefits of relaxation, stress relief, and promoting a sense of wellbeing.
Many of the stretches and postures used in yoga can help to keep the back supple and strong. There are many excellent videos available if you just don't have time to spare for a class, or can't get coverage to be away for that time. (There really is no substitute for a good yoga teacher and class, but a video is certainly better than not protecting your back at all!!)
The video that I found most useful is one by Rodney Yee, entitled: Yoga for Back Care. It is available on DVD from Gaiam.com at the following link: Yoga for Back Care
There are also several other products you might find helpful. One is created by the Mayo Clinic, also available at Gaiam.com. Mayo Clinic Wellness Solutions for Back Pain
It is crucial to find a method of stress relief and body care that feels good, is right for you, and works -- so that you will be encouraged to keep doing it. For me, that is yoga. Try one of these, or some other yoga video or class, if that's more appealing. Just do something proactive today for your own health, wellness and stress relief.
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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