3/21/2013 Caregiver's Self-Care Comfort Kit"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: Aromatherapy: 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. Other items: 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) 2/19/2013 Don't you wish life had a rewind button?"Do you mean that people on Uranus can rewind their life experiences and correct them at will?" The excerpt above is from one of my favorite early books (1983) by one of my favorite authors, Dr. Wayne W. Dyer, now with 30 books to his credit. In his classic parable about an alien from Uranus visiting Earth and attempting to understand our strange behaviors which don't reflect our reality, Dr. Dyer uses his trademark wit and wisdom along with his keen psychological insights to make clear how useless our neurotic human behaviors actually are. He manages to do this in a rather delightful and sometimes wickedly funny way. As a caregiver, I have often longed for a rewind button, when I have either done something really stupid, or said something that I immediately wished I could stuff back in my mouth, usually out of frustration or a total frazzling of my patience. I envied the rewind option available in Gifts from Eykis, on the fictional version of planet Uranus and could imagine myself holding my hands in the "time-out" sign in football and asking God for a "do-over". The best feature of rewind is that you get to repeat the experience having learned enough to modify it accordingly. Now wouldn't that be a handy trick for a caregiver? And if rewind/do-over actually was an option, it makes perfect sense that it's triggered by guilt. What a concept! Guilt would actually serve a helpful purpose rather than just crushing unsuspecting, well-meaning people under its unwieldy weight. Hmmm. So, the next time you feel guilty about something concerning your caregiver role -- about anything, big or small, of huge consequence or none -- consider the whole guilt/rewind/do-over thing. Without rewind, guilt does no good at all and actively harms us. So, as caregivers, we need to either release ourselves from guilt by acknowledging that we do the best we can in any situation and, being human, sometimes make mistakes or fall short of our goal. The other thing we can do is lobby for a rewind option on Earth. Somehow, I think forgiving ourselves is the better choice! What are some of your experiences with guilt, release, self-forgiveness and learning from past mistakes on the caregiving journey? I'd love to hear about them! 9/9/2012 Lessons from Alzheimer's, Part 1I found Alzheimer’s Disease to be a very powerful teacher over the course of my Mom’s 17-year journey through it. I want to share with you a couple of the most enlightening, soul-changing lessons it taught me:
1.) Acceptance -- Alzheimer’s is a “kick in the gut” kind of disease. The diagnosis knocks the wind out of you like falling off a galloping horse and hitting the ground at great speed. It hurts like hell and leaves you bruised and aching. You have a visceral, deep, grief reaction, as if you’d been told someone you love died. And, in a sense, Alzheimer’s can be thought of as a very slow, mind-stealing, personality-altering thief of life. But it doesn’t have to be! When my mother was diagnosed, first I got very angry and railed at the Universe that such a sweet, wonderful person, who gave selflessly to others all her life, could possibly be punished with this affliction. Once I moved beyond that, I wanted to stick my head firmly in the sands of denial and keep it there for a decade or two. But I couldn’t. I had to help her through it. I had to accept what was -- reality. But I’m not talking about curling-up-in-a-small-ball-of misery-and-waving-the-white-flag-of-surrender kind of acceptance. No, indeed! What I’m advocating is a sort of life-affirming, defiant acceptance. The kind where you look fear (and Alzheimer’s) in the face and say, “I may not be able to stop you from taking precious pieces of my loved one, but you can’t take away our love, devotion, dignity and simple human pleasures of living. You can’t define who my mother is or who I am. You can’t take away the joy of being alive!” My defiant acceptance approach served us very well over the years. It gave me perspective on things and helped me navigate the very tough choices that had to be made on a day by day, sometimes moment by moment basis. Defiant acceptance allowed me to be not only the best advocate for my mother, but also the best daughter I could be. Both are vital. So, if you face a diagnosis of AD (I’m calling it AD from here on because it’s shorter to type), you can take the defiant acceptance approach, for yourself or your loved one. Cultivate the positive treasures of life, and wring every single drop of love and joy and satisfaction from each moment. It may not change the outcome, but it will make the journey rich, abundant, & beautiful beyond measure. Life worth living… 2.) Patience -- I don’t know about you, but for me Patience with a capital “P” has been a life-long lesson. Apparently, I’m a slow learner, so I’ve been given zillions of opportunities with this one! But Patience, like Acceptance, has many faces or facets. I found I was absolutely no good at sitting back in resigned silence, waiting for things to change or un-change back to what they were. I’m not that kind of person. I have way too much energy, passion and purpose for changing the world to be patient with injustice, with evil, with willful destruction of our planet, with man’s inhumanity to man, with greed, cruelty or unnecessary suffering -- all of which are crippling our world. So, in some circumstances at least, impatience is called for as a driving motivator for change, a call to action. Maybe I’m just trying to put my flaw in the best possible light :) But, be that as it may, I have lived my life learning patience over and over. Alzheimer’s Disease is a wonderful teacher of patience. Oh boy, is it ever! I had to learn to hear unlimited repetition -- of stories, of sayings, of poems, of songs, of questions, of observations -- I called this the endless-loop feature of AD. My Mom would just get “stuck” in an endless loop of repeating the same thing. For example, we were stranded in an airport after missing a connection (due to weather) and had a 5 hour wait for the flight home from a wedding. This was the last time I traveled with her alone by air. It had already been a very stressful trip. One in which my mother, as is common with AD, got very confused being in unfamiliar surroundings, out of her routine. I was sad that even while visiting the house where she was born and grew up, where her sister was still living, she remembered it not at all. So much for long term memory, I thought. So, as we were sitting in the airport (a place full of noise and commotion and distraction), I wasn’t able to leave her side, even for a minute--to get food, or tend to a call of nature. We were joined at the hip for five very long torturous hours. She must have asked the question, “Where are we going?” at least a thousand times. I’m not exaggerating. I started out telling her, in detail that we were going home from a wedding, I told her where we had been, whom we had seen, etc., but after the 248th repetition of this explanation, I got creative. Realizing that whatever I said wasn’t “sticking” in her brain, I just made up destinations -- like, Timbuktu, Crazy Wanna Come, Somewhere Over the Rainbow, and on like that. It became a kind of game, to distract her and keep me from going over the edge into insanity. It worked! It even entertained our seatmate on the plane, where Mom continued to ask the question and receive my very outlandish creative answers. It was harmless enough, and a rather good coping skill. But seriously, AD pushes anyone’s patience to the max. Even a saint might be sorely tried by the level of patience required 24/7/365. I’m not a saint (as those who know me will attest). But, I found the deep well of patience was there for me to draw upon in dealing with Mom’s condition, over and over, day after day, year after year. No, I wasn’t perfect, God no. I made mistakes. We all do. Here’s the big secret: as a caregiver, you don’t have to be perfect. You just have to be “there” and willing. That’s it! I just gave you perhaps the most valuable tool you’ll ever get -- you can forgive and be gentle with yourself. Your compassion for your loved one can spill over for yourself and that’s perfectly fine. So, try your hand at practicing Creative Patience, or Selective Patience, and see how it changes your inner self and eases the journey. I’ll continue these Lessons from AD in future blog posts. Stay tuned for more action and adventure on the journey of care giving! 7/31/2012 The Legacy Project: Wisdom capturedLife Philosophy: "I've learned that it's much easier to be positive than negative, it's easier to smile than to frown, and when in doubt, eat chocolate!" ~Anonymous Now that's a philosophy I can truly embrace :) This is a quote from an anonymous elderly person participating in a project at Cornell University called the Legacy Project. This project is a truly amazing collection of "lessons for living from the wisest Americans", created by Karl Pillemer, a professor of human development in the College of Human Ecology at Cornell University, and Professor of Gerontology in Medicine at the Weill Cornell Medical College. Begun in 2004, the project used a variety of methods to collect these nuggets of wisdom and life experience, including a pilot study, surveys and in-depth interviews. The project gathered over 1500 answers to the question, "What are the most important lessons you have learned over the course of your life?" According to the website, "People from across the country in their 70s and beyond shared their wisdom for living. The advice ranges from how to be happy on a day-to-day basis, the secrets to a successful marriage, tips on raising children, ways to have a fullfilling career, strategies for dealing with illness and loss, and how to grow old fearlessly and well." Grouped into categories, this wisdom is made available to any who wish to find some heart-warming, practical, and sometimes downright funny advice from America's elders. The best of the lessons have been complied into a book, 30 Lessons for Living, which has the distinction of being named "Best Self-Help Book of 2011" by Library Journal. Here's to the wisest Americans, a tribute of gratitude for their humor, grit and experience, and to Karl Pillemer for being the catalyst for sharing it with all. 5/14/2012 Laughter is the best medicine!OK, I know what you're thinking..."How can I possibly find humor when this illness is so serious?" I understand. There were times I felt that way, too. But, you know what? Lack of a sense of humor can, if not kill you, make you miserable enough to wish it did! As a caregiver, you have a lot of responsibility on your shoulders, whether you are dealing directly with a loved one's daily care, or doing it though others at a distance. Stress is stress, and it's basically bad for you in whatever form it takes. Humor can wipe stress out, and reset your whole being into a happier, calmer state, and make life a whole lot more liveable. Humor can help you avoid being sucked into seriousness over and over again until it feels like you are mired in quicksand and sinking deeper by the minute. Humor can actually be your lifeline and help preserve your sanity.
So, how, you say, do I get my dose of humor? Well, that's a highly individual and personal choice. There are many answers: funny movies, Erma Bombeck or other humorous columnist or author, a daily dose of humor via the internet, such as a joke a day, the comics in the newspaper (or virtual version) or a page a day calendar with funny sayings. Situational humor may appeal, such as watching a farce or, my own personal fave, Rowan Atkinson as Mr. Bean has me in stitches with his silent comedic talents. You may have your own favorite stand up comedian. Whatever makes you laugh is good! This isn't just my opinion, by the way, but has been documented through studies, reflecting the benefits of belly laughs. I actually often found humor in my mother's little habits and sayings. She would often repeat the poem, "Laugh and the world laughs with you, weep and you weep alone, they want full measure of your pleasure, but they do not want your woe." I guess if a saying had to be stuck in repeat mode, that was a good one to replay. After hearing that over and over, one day I happened upon a little wooden plaque that made a pun of this poem: "Laugh and the world laughs with you, snore and you sleep alone..." I hung this in a prominent spot where it brought a chuckle each time I glanced at it. Little doses of humor count, too. Be creative! So choose your brand of humor and start laughing your way to better health! |
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
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