Leilani M Norman

Category: Caring is Art

  • The End of Caregiving

    The End of Caregiving

    A study of dementia caregivers revealed that those who were prepared for the death of their person with dementia (PWD) had better bereavement outcomes than those who were not. The study identified several themes that contributed to poor grief outcomes, such as the perception of the dying process as traumatic or unexpected; traumatic loss of the caregiver role and accompanying loneliness; and perceived unavailability of support, either pre- or post-loss (Supiano et al., 2022).

    While the majority of bereaved dementia family caregivers emerge after loss through largely positive and adaptive grief processes and resume previous levels of function after the death of their PWD, an estimated 9-25% experience complicated grief (CG), which increases with age and is associated with worse biopsychosocial outcomes for the griever (Supiano et al., 2022). CG is “characterized by yearning for the deceased, intrusive thoughts of the person who died, unrelenting sorrow, withdrawal from previous social relationships, difficulty accepting the death, and a sense that life is without purpose” (Supiano et al., 2022, p. 369). 

    Caregivers of PWD face increased poor outcomes because their care recipients are more likely to experience distressing events that may lead to poorer quality of life, earlier institutionalization, more hospitalizations, and risk of elder abuse (Young et al., 2023).

    Non-White caregivers tend to provide care for a longer duration, requiring more time-intensive care, engaging fewer formal support services than their White contemporaries. Non-White caregivers are more likely to face negatively biased interactions with health care services on behalf of their care recipients (Young et al., 2023)

    What can caregivers do to prepare?

    A combination of family and community support can ease caregivers’ transition to life after the passing of their loved one. Spiritual and religious communities offer fellowship and understanding from those who have walked this path before.

    Hospice care provides support for caregivers and family/friends of the terminally ill. Many people wait longer than they have to before requesting these wonderful services. According to Barbara Karnes, RN and end-of-life educator, “Hospice helps these patients live as comfortably as possible with the understanding that they won’t be cured. Hospice also provides reassurance and practical assistance to families of the patients.” Karnes’ blog offers practical and warm end-of-life education.

    Thanks for reading,
    Leilani

    References:

    Supiano, K. P., Luptak, M., Andersen, T., Beynon, C., Iacob, E., & Wong, B. (2022). If we knew then what we know now: The preparedness experience of pre-loss and post-loss dementia caregivers. Death Studies, 46(2), 369–380. https://doi-org.library.capella.edu/10.1080/07481187.2020.1731014

    Young, K. M., Young, T. D., & Young, K. (2023). Caring for the caregiver in dementia. The Journal of Family Practice, 72(5), 215–219. https://doi.org/10.12788/jfp.0606

  • Positive self-talk

    Positive self-talk

    Our ability to survive and thrive while providing care is largely dependent upon self-care. Diet, exercise, and sleep all contribute to wellness. However, including this in our caregiving lives is often tricky.

    A critical component of self-care is more easily attained: positive self-talk. Self-criticism can lead to feelings of inadequacy and demotivation. Learn more about the impact of self-talk and ways to use its power for greater wellbeing and caregiving efficacy: https://familycaregiversonline.net/the-power-of-positive-self-talk-a-guide-for-family-caregivers/

    Thanks for reading,
    Leilani

     

  • The Invisible Contributions of Informal Caregivers

    The Invisible Contributions of Informal Caregivers

    Informal caregivers are family members and friends who give their time, money, and love to someone with a chronic health condition. They often sacrifice their health, financial stability, and quality of life. The majority are working full-time. Despite these challenges, informal caregivers are crucial in our healthcare system. As of 2021, 38 million Americans are informal caregivers, providing over $600 billion in estimated economic value. Unpaid carers in England and Wales contribute a staggering £445 million to the economy every day – that’s £162 billion annually.

    Women contribute to 71% of the global hours of informal care.

    In addition to their economic contributions, informal caregivers provide essential emotional and social support to their loved ones. They help to alleviate feelings of isolation and loneliness and give a sense of companionship and connection.

    State and Federal initiatives to support unpaid caregivers are growing. The RAISE Family Caregivers Act, signed into law in 2018, requires developing a national strategy to support unpaid caregivers. The plan will include recommendations for improving caregiver training and support, promoting caregiver health and well-being, and increasing access to respite care.
    Reference: National Alliance for Caregiving. (2018). RAISE Family Caregivers Act signed into law. https://www.caregiving.org/raise-family-caregivers-act-signed-law/

    Several state initiatives to support unpaid caregivers in the US address diversity and inclusion, recognizing that caregiving can impact people from diverse backgrounds differently. New York State’s Caregiver Support Initiative focuses explicitly on supporting caregivers from diverse communities, including LGBTQIA+ caregivers and caregivers from racial and ethnic minority groups. The program provides support services and resources that are culturally and linguistically appropriate and are designed to meet the unique needs of diverse caregivers. California’s Caregiver Resource Centers provide services and resources to a diverse population of caregivers, including those from underserved communities, such as low-income families, immigrants, and rural communities. The program focuses on providing culturally and linguistically appropriate services and resources. Minnesota’s Live Well at Home grant program focuses on supporting caregivers from diverse communities. The program provides funding for community-based organizations to develop and implement caregiver support services that are culturally and linguistically appropriate.

    Thanks for reading,
    Leilani

  • Great Care Begins with Self Care

    Great Care Begins with Self Care

    Caring for family members presents many opportunities to serve, to love, and to grow from the difficulties inherent in the process. Dealing with difficult family members, especially when a legacy of trauma is present, can be one of the greatest challenges of our lives. Learning to give ourselves the love and kindness we don’t hesitate to give others is critical. This is a helpful article on the subject of difficult parent care from WebMd.
  • Healthcare Advocacy is Art

    Healthcare Advocacy is Art

    My mother was Clara Kawahara Norman, a dedicated healthcare practitioner and humanitarian. Originally from rural Hawaii, Clara was a Nurse Anesthetist for fifty years. She worked in rural communities for the majority of her career, and in her spare time, she volunteered. When she was in her late sixties, she made the long trek from California to an isolated clinic in the mountains of Guatemala with a humanitarian organization. Preceding each trip, she collected medical supplies and clothing to donate. Our family cherishes Clara’s memories and photographs of the surgical teams from around the world. They put in long hours and traveled far to provide healthcare for people living in poverty.  My mother said that they really enjoyed themselves doing that difficult work.

    Clara was associated with Harvard Medical School and Brigham & Women’s Hospital in Boston, MA. She proudly served on the surgical team that carried out the first successful kidney transplant in 1953.

    When my mother was at the end of her 95 years of life, one of the nurses said, “Thank you, Clara, for the hundreds of patients you took care of.”

    Paul Farmer was another extraordinary human being, whom I had only recently become aware of through the film “Bending the Arc”. The healthcare visionary and several close colleagues founded Partners in Health (PIH), bringing compassion and “accompaniment” into poor communities with great success. I highly recommend that you view the film, to witness the splendor of Farmer’s far-reaching contribution to the relief of suffering in the unrelenting war against Tuberculosis and HIV/AIDS. PIH has changed the lives of millions in some of the most challenging, impoverished conditions on earth.

     

    “In the Buddhist tradition, Dr. Paul Farmer would have been known as a Bodhisattva, a being whose deep understanding of the essential unity of life finds spontaneous, uncontrived expression in seeking the well-being of others. Like the late Vietnamese Zen Buddhist monk Thich Nhat Hanh, Farmer brought peace into the lives of those he met. In the Jewish tradition, he would have been called a real mensch, a person who instantly generated respect and admiration for embodying the highest human virtues of generosity, kindness, and wisdom.

    In a world flooded with greed, hate, and delusion, Farmer’s presence was an enormous gift. We need his example more than ever. His simple retort to defeatism rings in my ear: “I’m not cynical. Cynicism is a dead end.”

    Let us remember him, celebrate his life, and carry on his legacy, doing what we can to relieve suffering wherever we find it.” Well said.

    Bryan L. Tucker
    https://www.bostonglobe.com/2022/02/25/opinion/dr-paul-farmer-healing-presence-bedsides-world-over/