The Dominoes of Caregiving: Those Changes
Your caree has a change in condition, which causes a change in your caregiving role, which then seems to change your life.
How do you manage the domino effect of caregiving?
This was the topic of this morning’s Table Talk episode on Your Caregiving Journey. Holly, who cares for her husband, Dave, joined us to talk about how she adjusts to their changes because of his diagnosis of Frontotemporal dementia. You can listen to our show via the player below.
I loved our conversation because Holly walked us through the process of her internal changes. When she changed, she learned how to manage the changes. And, most important, when she changed from wishing for a different life to embracing the one she has, she found her peace. She’s no longer toppled by the dominoes. Instead, she steadies them.
During our discussion, Holly spoke about the five activities which bring her back into herself, which help her keep a healthy perspective, which allow her to enjoy her life. I’d love to know, in honor of our weekly Happy Saturday: What are the activities that help you breathe in life? How do you make time for them?
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4 Responses to “The Dominoes of Caregiving: Those Changes”
Bette says:
I really enjoyed today’s show, thank you Denise and Holly.
I love to swim and recently began swimming 3 mornings a week. I have found though, that the evenings work better for me, because it gives me something to look forward to in my day.
I liked Holly’s suggestion of socializing once a week. I use to love to go out with a girlfriend on occasion, but because of our moves and my lack of energy, I have not been doing this.
Tomorrow I am spending some time in Harrisburg by myself shopping, and this afternoon, remembering Holly’s words, decided to call a friend to meet me for lunch. I went to the phone twice before finally putting forth the effort to try and connect.
It is so sad that we can get bogged down in caregiving, and all the extras that our lives entail, to be too tired to make time for ourselves and the things that bring us joy. I continue to remind myself that caregiving can be better, but I can’t expect that to happen on its’ own.
Thank you for the encouragement!
Congratulations Bette on taking your first big step towards living your best life! I love how fast you implemented the message you received this morning. You are already sounding stronger.
Sending you a big Yahoo for empowering yourself to make this happen.
Warmly,
Holly
Holly Eburne´s last blog ..How to Move from Worry to HopefulnessHolly,
Thank you for the encouragement!I am just getting ready to go and my mother (who can’t be left alone anymore–so it takes a bit of planning for me to go–)says to me, “don’t you feel badly that you are leaving your children?”
Taking time for ourselves takes a lot of planning and preparing, I know it is so valuable for caregivers to do, in order to “reenergize” for this long journey, but sometimes it rattles your heart a bit to get there! (:
We almost have to prepare schedule-wise and emotion-wise. Thanks again!
Thank you, Holly, I did not hear the show yet but how you have learned to accept your life/embracing it as it is – inspires me.
Best, Carol
Carebuzz
Carol @ Carebuzz´s last blog ..Senior Care Questions
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Saturday, January 29, 2011
The Dominoes of Caregiving: Those Changes
Woman's Life Refutes a Hospice Myth - US News and World Report
By Dennis Thompson
HealthDay Reporter
FRIDAY, Jan. 28 (HealthDay News) -- Vailia Dennis says she is living proof that entering hospice doesn't mean you die on anyone else's timetable.
Dennis, 91, of Rancho Bernardo, Calif., signed up for hospice care 6½ years ago, after she was diagnosed with a fatal heart condition. At the time, she was told she'd have six months to live.
"The illness, the heart condition that I have, is one that should have and could have caused my death a long time ago, and just hasn't done it up until now," Dennis said. "Nobody knows why, and that's OK by me."
Dennis was 85 when her doctor gave her the bad news.
"The doctor wanted me to go in for open heart surgery," she said. "I refused, and I thought it made a lot of sense. I've seen people my age go in for open heart surgery and, when they come out, they aren't the same. They are more fragile."
Dennis promptly called San Diego Hospice and signed up for its care. She already knew that hospice care was what she wanted and needed.
"I have had three members of my family die at hospice," she said. "Hospice, to me, is like handing my problems to an angel. That's the way I feel about hospice."
Dennis still lives at home. Nurses and home health aides come by to check in on her condition and help her with household chores. A chaplain, one of her best friends, visits weekly.
"I didn't want to leave my home," she said. "My home's my home. That's where I'm staying."
She does struggle with symptoms from her heart condition. She experiences lightheadedness and eye impairment, has a hard time catching her breath and suffers head pain. When the symptoms come over her, she says, she sits still and takes oxygen and, before too long, feels better. She also has sustained some short-term memory loss as the heart condition starves her brain of oxygen.
But she's also having a lot of fun. She sits at her computer most days and writes recollections from her life. Other days, she's visited by family and friends.
"People drop in or I get wonderful phone calls, and I'm enjoying my life," Dennis said. "I'm not aware I'm doing that. It's just the way it is."
Hospice workers haven't had to help her family deal with their feelings about her death yet, Dennis said, but knowing that hospice will be there for them once she's gone is comforting.
"After death, hospice is so wonderful," she said. "The family doesn't become nonexistent after they've lost a loved one. There is loving care given to these people. When my uncle died, his wife sat by his bed and she would not leave his bed and would not stop holding his hand. They must have left her there for six or seven hours, with no one interfering."
When asked her reflections on her own impending death, Dennis seemed genuinely surprised by the question.
"I haven't even considered that," she said, chuckling. "I just keep living. I haven't considered it at all. There are no answers to why I keep going on, but I do. I know I am in the last stage of life, and that death is much closer than it has been. Am I frightened? No. Am I curious about what happens next? Yes -- but I'm not afraid."
"There is no reason to feel fear," she said. "Fear only makes you unhappy. It destroys what could be a day or two of pleasure. There are real pleasures that do exist, even if you are dying."
More information
A companion article offers information about hospice care.
Echols: Hospice volunteers make a difference » Times Record News
Hospice of Wichita Falls offers guidance and support to individuals with life-limiting illnesses. In addition, families are helped as they travel down a path of what is often unfamiliar territory. "What makes Hospice of Wichita Falls so special in addition to their highly trained staff and excellent care," said one family member, "is the volunteers. They were all so kind and compassionate when our loved one was on hospice care."
Visitors only have to enter the doors and take a few short steps at Hospice of Wichita Falls before they run into a volunteer who is on a mission to meet a need. When one such volunteer was asked, "How can you possibly volunteer in such a painful area of people's lives? Doesn't it make you feel depressed knowing the people you are helping may not be here for long?" The volunteer smiles not only with her lips but with her eyes and says, "Hospice doesn't mean that death will occur soon. Yes, they focus on caring rather than curing but I can think of no better place or group of people I would want to have care for me or one of my loved ones than those at Hospice of Wichita Falls."
Another volunteer simply says, "How can I not serve in such a wonderful and caring place? When you volunteer at Hospice of Wichita Falls you meet extraordinary people. Some are employees who give of themselves day in and day out. Other times it may be a patient or a family member who needs comforting or just a cup of warm coffee. Sometimes all it takes is just being there or lending a listening ear. Besides, it challenges my spirit and fills my heart with warmth knowing I can help make a difference in another's life whether it's long-term or short."
Hospice of Wichita Falls has more than 200 volunteers that give of their skills in a variety of ways. Some volunteers are trained to work with patients and their families, allowing caregivers some free time to care for personal issues or simply receive some much needed rest. Other volunteers help with mailouts or work in the center helping wherever needed. They volunteer because they want to make a difference and they truly do. Our volunteers play an important role in making sure Hospice of Wichita Falls runs smoothly.
If you would like to help make a difference and join our wonderful team of staff and volunteers, please call Cindy or Mona at 940-691-0982. Our next training is from 1:30-4 p.m., each Thursday, March 10-31. Volunteering at Hospice of Wichita Falls is a gift to our patients, families, and friends as well as to our staff and the community.
Tuesday, January 25, 2011
Physician-author Gary McCarragher Launches Site to Promote End-of-Life Care and Offers Video Support for Terminally Ill and Their Caregivers
Providing compassionate, end-of-life care defines the very essence of the universal anthem, 'Do unto others.'
Tampa, FL (PRWEB) January 25, 2011
Dr. Gary McCarragher, a hospice physician and writer, announced today the launch of his new Web site "Hospice - Care for Life" http://www.hospicecareforlife.com. The site offers a wide range of help for the terminally ill, their families and others who provide care and support.
The site is launched just as the United States' new healthcare law goes into effect in the midst of a national debate on the subject. McCarragher is an advocate of patients having voluntary consultations with their physicians to discuss advance care planning, consisting of advance care directives and end-of-life care planning. McCarragher was interviewed by NPR on the subject. His opinion pieces have been featured in the St. Petersburg Times and The Tampa Tribune.
McCarragher, http://www.garymccarragher.com, a native of Canada, is one of the few hospice physicians making himself available to the online public to answer questions about end-of-life care, advance care and grief following the death of a loved one.
"At the Hospice - Care For Life Web site, patients and their families will find a wealth of valuable information touching on all aspects of hospice and palliative care," McCarragher said. "Providing compassionate, humane, end-of-life care defines the very essence of the universal anthem 'do onto others.' If we dare to celebrate the value of human life and the human spirit, then we are duty-bound to each other to humanely administer to the dying. Hospice magnificently embodies these sacrosanct values. For the care and compassion it provides to our dying patients, in their most vulnerable time of life, I believe Hospice is among the most magnificent organizations ever created for humankind."
In addition to special areas dedicated to patients, families, healthcare providers and spiritual advisers, Dr. Gary McCarragher's Hospice - Care for Life site also includes articles from such luminaries as Dr. Ira Byock, author of Dying Well: The Prospect of Growth at the End of Life, who has been featured on CBS' 60 Minutes. There also is an insightful question-and-answer conversation with nationally recognized hospice expert, Dr. David McGrew.
While most of the information is dedicated to helping patients understand their choices of care and focusing on compassionate care through the end of life, the site also includes information for those who are grieving after the death of a loved one and includes a link to a national hospice advocacy network.
McCarragher, a graduate of renowned McGill University, teaches college-level anatomy. He performs in community theater and supports BLOOM Africa, a nonprofit charity supporting orphans.
McCarragher's Web site already has drawn praise from national experts on hospice and palliative care.
"I am delighted to read of your passion and the Web site you are creating. I truly support your efforts. Thank you for all you are doing," said Dr. Ira Byock, past president of the American Academy of Hospice and Palliative Medicine, who has appeared on NPR's Talk of the Nation and been quoted in USA Today, among other publications.
Dr. David McGrew, president of Hospice & Palliative Physician Services of HPH Hospice, and a founding member and past president of the American Academy of Hospice and Palliative Medicine, said, "In a society characterized as 'death denying,' it is important to help individuals find answers to questions about end-of-life care. I applaud Dr. McCarragher's new Web site for its mission to connect patients and their caregivers with helpful information and compassionate support networks."
In addition to his medical career, McCarragher is working on a novel involving a physician who faces a crisis that threatens to end his career and jeopardize his personal relationships. Excerpts of the forthcoming novel are available on YouTube.
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