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) 12/5/2012 A Caregiver's Serenity PrayerThis prayer is written as a blessing to encourage and uplift all who strive to give their best in caring for a loved one.
God, grant me the tender, open-hearted love needed on the caregiving journey, the strength of body, serenity of mind, clarity of purpose and willingness of spirit to meet the extraordinary, everyday constant changes and challenges of caregiving with a smile and good cheer. And, please grant me the compassion and courage to choose the right path through the myriad decisions, making the very best choices for the highest good of my loved one, my family, and myself. Allow me to know that I am enough, I do enough, and by giving of myself at the deepest soul level, caring with diligence for my own health and well-being, also as priority, I will experience the beautiful rewards intrinsic to caring for another. Let me seek, find, and accept help and loving support from family, friends, community and professionals for the journey of caring. Let my loved one receive the gift of love from my heart and hands with gratitude and healing according to Your will. Bless the hands, hearts and spirits of both giver and receiver in Your circle of light & life and keep us filled with gratitude and grace each day! copyright 2012, Karen Bonnell 11/16/2012 Caregiving is like a tableAs the Thanksgiving holiday approaches, I am reflecting on those people, events, blessings which have made life immeasurably richer -- family, friends, beloved pets, experiences that create moments of heart-soaring joy and spiritual transcendence -- for gifts great and small, blessings bright and beautiful, I give thanks! One of the brightest blessings in my life was my mother, Ann. She passed away this year in January, and her 93rd birthday would have been next week, so I am feeling a very complicated mix of emotions. And it occurs to me that so many caregivers face these jumbled roller-coaster emotions pretty much all the time. I think being willing to be emotionally vulnerable is almost a prerequisite to taking on the role of caregiver. You somehow find a way to blend love, duty, a desire to give, to be compassionate, to let your hands and heart do the work needed to bring tender loving care to another. You have to find a balance in the juxtaposition of both opening the heart and shielding it to protect it from being crushed and shattered. It is not an easy task. And yet it is one of the most rewarding experiences a person can have, in my opinion. The key words about caregiving that come up repeatedly for me are compassion, vulnerability, stamina, and acceptance. You need them all in just about equal measure in order to keep your balance and not lose your own sense of self while caring for another. So, I picture these qualities as the legs on a table of caregiving -- if they are equal, the table top is evenly "balanced", strong and stable and it can bear a great deal of weight (and many blessings, too!). If not, things slip off and hit the floor, and shatter into a million pieces. Things like your sanity, peace of mind, self-esteem, health, and other really important stuff. Compassion and vulnerability are the "softer" emotions you need to draw upon to be loving and effective as a caregiver, while stamina and acceptance are strong qualities that you need to use in order to keep your own health and well-being intact. They all work together to create a good support for both you and your loved one. So, how do you get your caregiving table in balance? I really wish there was a "one-size-fits-all" answer to this question, but, though there is a lot of advice out there, I think this is something each individual caregiver has to come to terms with in his or her own situation, with regard to the personalities and needs, relationships and responsibilities involved. From my own experience, I would encourage you to keep your heart open, even knowing the risks. Find ways to keep the softer qualities of compassion and vulnerability alive and prevent yourself from hardening as a defense mechanism. (Gratitude and remembering all the good in life, past and present help!) With some practice, this is similar to juggling and it becomes almost automatic. Sometimes it is simply keeping your attention on the balance aspect that is necessary to make it work. Other times, it is reaching out for help (there's vulnerability, again!) Keeping your own spirit strong and nurtured is crucial, and this website is full of ideas and information to help you do that through relieving stress, finding peace and comfort, balancing your own needs and care with that of your loved one. So, to all the caregivers and to those they love: Wishes for a bountiful, beautiful, balanced table of blessings at Thanksgiving and the same for the caregiving table all year round! Happy Thanksgiving!10/23/2012 The Incredible Power of Love"If you would lift me up, you must be on higher ground."
~Ralph Waldo Emerson "Nothing we do, however virtuous, can be accomplished alone; therefore we are saved by love." ~Reinhold Niebuhr I was just reading in the Alzheimer's Reading Room of a study done jointly by Johns Hopkins and the Utah State University on the topic of whether a close caregiver relationship slows the progression of Alzheimer's Disease. From personal experience as a daughter and long term caregiver for my mother, my resounding answer is YES! Emphatically, absolutely, positively YES! The answer they arrived at in the study was also yes, but it wasn't quite as emphatic as mine. I guess when you are measuring with the heart and intuition, it may be clearer than with scientific instruments. Through my own direct observations and those of medical professionals and Alzheimer's support experts, it was often noted how unusually gradual my mother's decline was over a period of 17 years. She actually set a record for length of attendance at the day care facility, and was their "poster child" for optimal functioning with the disease. I am fully and gratefully aware that a large part of the credit for my mother's gentle, slow progression had to do with the excellence of the whole team participating in her care. However, I remain convinced that the life-long closeness (well, with the notable exception of the hormone hell of my teenage years, when one of us would have had to be approaching sainthood in order to have a peaceful, loving, untroubled relationship!) of our mother-daughter relationship and daily expressions of love and caring also dramatically helped. The study, conducted by Constantine Lyketsos, M.D., M.H.S., the Elizabeth Plank Althouse Professor in Alzheimer’s Disease Research and director of the Johns Hopkins Memory and Alzheimer’s Treatment Center and colleagues from Utah State, University of Washington, Duke University and Boston University examined 167 pairs of caregivers and Alzheimer’s patients. The pairs were recruited from the Cache County (Utah) Dementia Progression Study, which has tracked hundreds of people with Alzheimer’s and other types of dementia since 1994. The monitoring assessments were done using the Mini-Mental State Exam (MMSE) and Clinical Dementia Rating, with the tests given at six-month intervals, for a period of four years beginning in 2002. The caregivers were interviewed and questioned about their perception of the closeness of the relationship to the Alzheimer's patient -- not surprisingly, the caregivers who described a close relationship had partners with significantly slower measurable decline than those who did not have close relationships. Love energy is some of the most potent, powerful and postive energy in our human experience and volumes have been written to honor both the bond between mother and child and the love between husband and wife. I would also add the special, unconditional love of a pet to the equation (usually a dog, sometimes a cat) which adds tremendously to the quality of life and perhaps to a slowing of disease, including Alzheimer's. If you want to get metaphysical about it, love is a high frequency of vibrational energy, and can lift a person out of disease, which is a lower vibrational frequency. So, in my admittedly unscientific conclusion, I believe that love can lift us up to higher ground, working its miracles healing human hearts and minds through its magic. I have all the proof I need in my own life experience. Maybe one day, the science will catch up :) 10/3/2012 Memory Cafes & Overnight Respite CareI've just been reading about these two concepts for Alzheimer's care, which frankly could completely change the face of caregiving for families dealing with this difficult disease. Given that one of the biggest problems for family caregivers caring for their loved one at home is isolation/depression, the chance to be with a group of other caregivers (and care receivers) in an enjoyable social setting provided by the Memory Cafe is a perfect boost to mental and emotional health. Even respite care, though very necessary, doesn't provide the same kind of supportive, warm, interactive environment in which to simply exchange conversation, ideas and enjoy the company of others who completely understand the challenges of the Alzheimer's journey. It benefits both the caregiver and receiver to have this type of socially stimulating environment. It is not a "support group" for caregivers, since the aim is not to provide education, problem solving, or information, but rather just to have fun! The concept for Memory Cafes is really beginning to catch on in England, and is now being actively advocated here in the US as well. The focus is on positive reinforcement among peers, laughter, food and simple pleasure in the company of others who are going through the same journey -- without any stigma attached. After all, other caregivers will be much more understanding of behaviors that might cause embarassment in a public setting. According to John T. McFadden, in an article written for the Alzheimer's Reading Room: A Reminder: Why We Need Memory Cafes, "Memory Cafes are, first and foremost, a setting in which persons with memory loss can share fun and laughter with their care partners and friends in a setting free from awkwardness and stigma." Speaking as a former caregiver, I think this is a truly wonderful idea, one whose time has come! Mr. McFadden has written a newly released book to champion the cause, titled, Aging Together: Dementia, Friendship, and Flourishing Communities. He and his wife are planning to visit existing Memory Cafes in England in order to refine a model for use in America. This is a concept we should most definitely support. It just makes sense to tap this important resource we have in each other -- our sense of friendship and community, which can be an invaluable help to those on the front lines of Alzheimer's. The second concept, which is new to me, but has been practiced at the Hebrew Home at Riverdale in New York for the past 10 years, is overnight care for dementia patients to allow caregivers a good night's rest at home. This innovative concept makes 24-hour use of the nursing home facility, to provide day care from 8:30am to 4 pm and overnight care from 7 pm to 7 am. The program creates a sort of party atmosphere for the participants, with music, marimbas, and dancing as well as singalongs, crafts, and therapy sessions that last till dawn. There is also provision made for those whose Alzheimer's may be more advanced, which includes soothing sounds, aromatherapy, massage and touch therapy. If you would like to read more about this, here's a link to an Associated Press article appearing in the Wall Street Journal, updated October 1, 2012, titled: Overnight dementia 'camp' allows caregivers rest. Because so many Alzheimer's patients are very wakeful and sometimes agitated at night (called Sundowning), it creates major problems for families when their sleep is disrupted night after night by this behavior. Again, from a personal experience perspective, this was the single most insurmountable problem for my family -- sleep deprivation for months on end. It errodes a person's health, sanity, and makes the demands of caregiving impossible to continue. It is a major complaint of Alzheimer's caregivers and one of the main reasons for institutionalizing their loved one. It doesn't have to be if there are more programs for overnight respite care developed around the country. It really makes perfect sense to use facilities around the clock (with different shifts of staff, obviously), so that families can rest and resume their care duties after a good night's sleep. I would love to hear your feedback on these two concepts and any personal stories you'd like to share about how your family is affected by these challenges of caregiving. Feel free to comment below. |
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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