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Managing The Stress ~ Making The Decisions ~ Discovering The Meaning |
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Caregiving |
Solutions To Your Caregiving Situations Throughout Your Caregiving Years |
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Your Caregiving Successes I Am Who I Want To Be
(Editor’s Note: We've had the good fortune of meeting wonderful family caregivers over the years. We first met Devra Jacobson four years ago and regularly ask for her feedback and suggestions on story ideas. We asked for her input about caregiving successes, which led to a fascinating discussion. Our discussion follows. Devra cares for her adult daughter, Karen Sue.)
Caregiving: When you speak of successful traits of a family caregiver, you talk in terms of action--getting out of the house, living as full a life as possible outside the caregiving realm. Tell us about your actions and activities. And, tell us how those activities have affected you and your daughter. Devra: I have always sought activities outside of the routine of “being the caregiver”. The hunt for fresh experiences (i.e., reading the newspapers, going for walks without destinations, browsing in museums and shops) as well as the exposure to the new, different or unknown stimulates my being and expands the boundaries of who-I-might-otherwise-be. Aside from the stress and trauma of emergency, the repetition of the days of caregiving can exhaust, tire and dull the mind and body. I survey a variety of venues from book discussions, theatre, movies, gallery walks, public libraries, parks to streets and corners of my neighborhood. I share these adventures with my daughter by bringing home brochures, sharing newspaper articles or surprising Karen with a little favor from the event. This year, thanks to family and friends who have paid for the subscription tickets, Karen Sue and I are going to the Goodman Theater for a series of plays on Thursdays afternoons. For myself, it is delicious anticipation to have these outings to look forward to sharing with my daughter. I arranged to have aisle seats near an exit so she is physically able to handle the outing. She’s thrilled to be able to get to do something she loves and feels secure knowing I can assist her from taxicab to front of the line in the Women’s Room. If something unforeseen happens, she knows I can act quick and fast to keep her “safe”, “to make it all better” (which is now defined as “better than it was”). Although chronically ill, Karen Sue’s skills and interests have expanded my world. I would never have had this opportunity to be with her in her world in the way that I do. After practicing law, Karen returned to graduate school and obtained her MLIS (public library services for children and young adults). Now that her illness prevents her from working and confines her to the home most days, Karen is fortunate to have an entire world of listservs, communities, friends and resources online. My daughter may not have the stamina to accompany me on my adventures. However, she goes online with a vengeance and extends “our experiences” by e-mailing me websites with more information about the places I’ve been, the things I’ve seen. Just as thrilling, through Karen Sue’s online communities, I have met people from around the world, specialists in the field of children literature, and have been introduced to other cultures. Because Karen and I were “forced" to have so much face-to-face time, we have laughed more throughout the tears than we ever had before her disability. Not only do we exchange memories, ideas, joy and knowledge in conversation but the luxury of e-mail allows for each our own downtime. A confession: I would not have felt comfortable enough to get my own personal computer and Internet connection were it not for my own personal 24/7 “tech support” nearby (my daughter lives three floors from me in the same apartment building). Karen Sue has proven to be a wonderful teacher. Literally, virtually the-places-we-go are unlimited! We have found websites for every occasion, for every emotion, for every mood. Recently, a professional book discussion leader was unable to lead one of my book discussion groups, so with less than twenty-four hours notice, I found myself the facilitator. As I began organizing my notes (from reading the book months prior), Karen Sue began to search the Net. She found critical information that was otherwise not immediately available or accessible about both the author and book. The synergy that exists as we worked out discussion questions (and discussed other concepts) is dynamic; it is only one example of how we create energy, emotion and experience outside of the confines of caregiving. Most excitingly, since that project, Karen Sue became so interested in the group’s reading list that she read all the titles up for discussion. I now find myself having in-home conversations that can last for months and are a source of action and energy for so much more. For example, if video based on the book is available, we watch it and compare the strengths and weaknesses of different formats. I’m hoping Karen will be well enough to attend one the book presentations that the two of us have worked on. Sometimes, I’m just the legs and mouthpiece for her ideas.
Caregiving: You talk of a family caregiver as being "self-contained". Can you elaborate? Devra: At the present time, I feel like a self-contained caregiver because, without compromising who I am, I am able to be the physical, emotional, and psychological caregiver of my daughter. Knowing my own strengths and needs enables me to truly enhance my life without the feelings of helplessness, anger, or resentment some caregivers experience. When outside assistance (from visiting nurses to visiting friends) is necessary, I know how to ask. My life is expanded because I don’t waste energy trying to keep up with “normal” families and have become quite creative in finding resources that engage me. Yet, I know that every plan is flexible, contingent upon Karen’s health and the circumstances of our days. By simplifying our lives, cutting out negative people, and just stating the facts versus protecting others from the realities of living with a chronically-ill daughter, I make sure I am responsible for my own well-being, fun, and joy in each day.
Caregiving: When you think back to your first "stint" as a family caregiver, how have you changed for the better? What did you learn then that you apply to your role today? Devra: Since I’ve been caregiving for fifty years, I refer to myself a seasoned caregiver in sensible shoes. I have learned what matters and what doesn’t; how to identify the givers and the takers; and what I can do and what I can’t do. By applying the realities of my situation, I do not dwell on “if only”, “why me”, or “the sky is falling”. Instead, I have developed skills and interests (e.g., writing, art work, mentoring) which more deeply and honestly reflect who I am. Consequentially, I have been rewarded by meeting special people that I would not otherwise have had the opportunity to meet. My life is fuller, richer and more meaningful, because I developed my own inner bank of resources. I am what I am because of what others could not be.
Caregiving: What suggestions/advice/encouragement can you offer to family caregivers who feel stuck in a rut? Who know they should get out but are just too tired, too overwhelmed? Devra: For the stuck-in-a-rut caregiver, I recommend starting slowly to replenish and refresh yourself. Activate your senses for ten minutes a day. Read your favorite poem aloud and hear the sound of your voice in a new way. Smell the scent of cinnamon and remember all your favorite foods that remind you of happy times. Aim to increase your own personal, quality time to forty-five minutes per day, even if the time must be divided into two or three different segments. Get out of the house and notice the world: Eavesdrop on conversations and make up stories about the parts that you heard! Follow your passions and meet people who share them. When people meet me they don’t merely categorize me as “Devra, the caregiver” but rather “Devra, an interesting person.” Would you be interested in meeting you? Are you interested in you?
Devra’s bio, how she describes herself and her life: Devra R. Jacobson is 68-years-old. She currently is the primary caregiver for her chronically-ill, adult daughter, Karen L. Simonetti. Karen Sue suffers from multiple system failure and latent effects from treatment to cure cancer; the prognosis is not good. Devra knows there will be a time when she won’t be able to be able to participate in her book discussion groups, go for long walks, or financially participate in these or some of her other leisure activities and interests. She doesn’t drain herself worrying about it too much because she knows she will survive, that she filled herself with the ingredients of a worthwhile life, and she knows how to reach out when she has to. She would like to remain as independent as possible as long as she can and would love to publish some of her writings. Caring for three ill husbands, challenged with the slow decline of her now-deceased parents, and now living the horror of watching her daughter’s health and energy deteriorate, Devra understands the cycle of life and measures her days to the best of her ability.
Quick Tip: How would you write your bio? This month, take a few minutes to create your own bio. Include information about relationships, marriages, children, grandchildren, interests, hobbies, life philosophy, future goals. Once completed, put the bio away for a few days. Then, revisit it with fresh eyes. Is this the bio you want for your life? If not, put together a game plan that helps you create the life you want to read about in your own bio. |
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