Sibling and Long-Distance Caregiving Issues Examined

We wanted to share two items about sibling and long-distance caregiving. First, Carol O'Dell writes about the difficulty in coordinating caregiving between sibling on her Mothering Mother and More blog.

If you’re the primary caregiver, you may feel resentment toward your “free” sibling who works, goes to movies, take vacations.

If you’re the “other” sibling, you feel guilty. You don’t know where you fit in. You’re uncomfortable speaking up and voicing your opinion because after all, you’re not the one doing all the work–and you’re reminded of that often.

If you’re the third sibling, well, you might as well be in the outer Netherlands. That’s might be how it feels. All those childhood birth order issues get kicked right back up.

Second, an article from the Craig Daily Press (CO) discusses the experience of Rene Mattone, who lives far away from her parents, leaving the responsibility for daily caregiving to her six siblings. Her father is in the early stages of Alzheimer's disease and her mother has cancer.

In some respects, living far away is easier because Mattone doesn’t have to witness the changes in her parents — her father is in the early stages of Alzheimer’s disease and her mother has cancer — yet the distance often leaves her feeling guilty and helpless.

“I feel like I’d like to be able to do more, like I’m a little bit of a disappointment because I can’t be there,” she said.

Living far away from an aging parent — especially one who is injured or sick — can be an emotional rollercoaster for an adult child, who must cope with worry, frustration and feelings of inadequacy. These feelings are compounded by the stress of caring for that person over hundreds or thousands of miles.

Seeking Grandparents for Caregiving Survey

From the Denton Record-Chronicle:

Dr. Bert Hayslip of the University of North Texas Psychology Department and UNT student Shanna Davis are conducting a survey exploring the role of endurance as a resource among grandparents who are raising grandchildren on a full-time basis. The survey will ask questions about the grandparents, the caregiving situation and about the relationship to the grandchild. The survey takes about an hour to do and can be done at home.

To qualify for the project, grandparents must be primarily responsible for the full-time care of their grandchildren, who must be younger than 18 and residing with the grandparent.

Those interested can have the survey mailed to them. All information will be confidential. Each grandparent will be assigned a code number that will uniquely identify them only to Hayslip and Davis; no names will appear on the survey.

Also, grandparent caregivers are under no obligation to complete the survey even if they have begun the project. If desired, participants may receive results of the project when it is completed.

For more information, call 940-565-2675 or e-mail hayslipb@unt.edu

Caregiver's Viewpoint: Validating Dementia Patients Comes Naturally

Author and caregiver Carol Bradley Bursack writes about how she dealt with her father's delusional state from dementia. Before it became a known as 'validation theory,' Bursack sought to allay her father's anxiety by helping re-create the reality he was experiencing.

Dad was adamant. He was waiting for his medical degree to come from the University of Minnesota and wondered why it was taking so long. I did what I usually did, and waited a few days to see if this episode of delusionary thinking would pass. It did not. So, I went to my computer and designed a medical degree with my dad’s name on it, scribbled some “signatures” on the bottom, put it in a mailing envelope and brought it to him, in the nursing home, the following day. He was delighted.

PBS Produces Caring for Your Parents

Last month we shared a request for videos from PBS for people caring for elderly parents. The program will be airing April 2, 2008 spring and PBS has placed some of the videos on their website.

"As the population ages, many adult children are grappling with an unprecedented social, cultural, economic, and personal revolution as they transition into the primary caregiver role for their aging parents. Produced, written, and directed by award-winning filmmaker Michael Kirk, Caring for Your Parents is a moving two-hour special that draws much-needed attention to this universal reality."

Sparking Passion for the Job in Professional Caregivers

A thoughtful post from the Caregiving at the Crossroads blog, Sharon K. Brothers, MSW, points out that training programs need to ignite a spark in new professional caregivers to develop their love of the profession. Too many new workers do not complete their training or leave the profession very early. If you have ideas on ways to instill a love of caregiving in new workers, please share them with us.

When Faced With the Challenges of Caregiving, Find a Mentor

Dorian Martin, who cared for her mother and grandmother, offers a wonderful suggestion to those struggling with the new role of caregiver. Find a mentor to help you through. Look to people you already know who have assisted their loved ones and ask for their advice and their support. Read the full article at OurAlzheimer's.com.

Three Essays on Caregiving

Rochester's Democrat and Chronicle posted three guest essays last Sunday on the challenges and joys of caregiving. The cover a range of scenarios and offer insight into the caregiving experience.

Switching roles: Transitioning from giving help to receiving it

Putting to use the gerontology he had taught

Rising to the challenge of caring for elders

The Financial Costs of Caring for a Spouse

Claire Howard of the Journal Star reports on the financial implications of caregiving for patients with chronic or terminal illness. In most cases in the United States, spouses cannot be paid as caregivers, forcing many couples to make difficult decisions regarding care. Many spouses work outside the home, placing their loved one in long-term care or a nursing home. Others resort to divorcing in order to be paid for giving care to their former spouse. Howard relates personal examples of these difficult choices.

The Mental Health Effects of Caregiving

A blog post on MSCaregiver.com questions the idea that caring for those with a serious impairment, in this case multiple sclerosis, impacts caregivers' mental health more negatively than the other stressors of life. In fact, the blog asserts that caregivers mental health is not worse than the general population.

Caregivers do need to pay attention to their overall health and seek assistance when needed. View some tools for caregivers, including a caregiver self-assessment questionnaire, at HFA's Caregiver's Corner.

Caring for Family Members with Alzheimer's and Dementia Patients Creates Challenges

Jeanne M. West,a registered nurse and health care administrator, writes in a Pennsylvania newspaper of the difficulty providing care for those suffering from Alzheimer's disease and dementia. Despite the fact that West had taught caregiving skills for 20 years, with a particular emphasis on the care of seniors and those with dementia and Alzheimer's disease, she found herself challenged when she needed to provide care for her husband who was diagnosed with dementia. West is a past president and board member of the Central Coast Chapter (Santa Barbara, Calif.) of the Alzheimer’s Association.

The Importance of Volunteers in Hospice and Palliative Care

Nancy Forsyth, a palliative care volunteer for 25 years, speaks of the importance of volunteering to care for the terminally ill. Forsyth has an aggressive form of lung cancer and is forgoing further treatment for the cancer. The Shoreline Beacon article discusses how her experience as a volunteer is helping her while dealing with her own illness.

Are you interested in becoming a hospice or palliative care volunteer ? Volunteers in hospice find it personally gratifying, intellectually stimulating, and emotionally meaningful to assist those in need at a critical point in their lives.

Children as Caregivers, the Burdens Placed on Kids with Chronically Ill Parents

This in-depth piece by Washington Post reporter Michael Alison Chandler looks at the role more and more children are playing as caregivers for their chronically ill parents. Chandles sites a 2005 survey by the United Hospital Fund and the National Alliance for Caregiving that shows as many as 1.4 million children in the United States from age 8 to 18 care for a chronically ill or disabled relative. The burden of caring for ill parents is having a huge effect on these children, and there are few public services to offer needed assistance.

Published August 25, 2007

An Author's View on Caregiving and Hospice

Author Carol D. O'Dell (Mothering Mother) discusses how hospice can assist caregivers and patient in knowing when to say goodbye.

Order HFA's The Dying Process: A Guide for Caregivers to learn more about caring for a teminally ill patient.

Posted August 28, 2007

Hospice Offers Serenity at End of Life

Story of a hospice patient in Canada, and how hospice helped him rediscover purpose at the end of life.

Read more hospice stories on HFA's website.

Printed August 26, 2007.