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January 7, 2009 > When Adult Children Become Caregivers

When Adult Children Become Caregivers

Experts Discuss Tools for Effective Caregiving and End-of-Life Decisions

As we age, family roles change - sometimes drastically. Many times adult children will become primary caregivers to parents that are facing a chronic health condition or end-of-life care options, such as hospice.

The truth is that most adult children serving as caregivers for aging parents have no formal training and must make tough decisions. Both caregivers and those they are caring for need support.

On Tuesday, Jan. 13, Washington Hospital will host two caregiving experts for a free Health & Wellness seminar entitled Aging Parents and Caregiving Support.
Donna Schempp, L.C.S.W., program director for Family Caregiver Alliance, will address issues caregivers may encounter, as well as how to access support and resources in the local community.

"Family Caregiver Alliance (FCA) is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy," Schempp explains.

Ellen Cuozzo, R.N., Certified Hospice & Palliative Nurse (CHPN), who serves as the East Bay Community Relations Manager for Pathways Home Health, Hospice & Private Duty, will focus her portion of the seminar on informing audience members about the benefits of hospice care for those with a life-limiting disease.

"I would like to talk about how to communicate with loved ones about what you desire for yourself and making the decision based on your personal philosophy - in other words, how to have those conversions about what you desire for yourself," Cuozzo says. "Loved ones are sometimes expected to do everything to keep themselves alive when they may not be what they want for themselves."

Caring for yourself as well as others
Schempp's talk will center around five talking points:
* Who is a caregiver
* Needs of caregivers
* What you need to know about eldercare
* Ways to access community resources
* Taking care of yourself as a caregiver
Oftentimes, Schempp says, it can be difficult for both parents and adult children caregivers to adjust to a change in the family dynamic.

"There is role change when you become a caregiver for your parents," Schempp says. "Problems arise when your parents feel that you are taking away their autonomy and independence and making decisions for them. If your parents have dementia, it becomes even more complicated, as the need to take over is greater. How these changes are navigated will make a big difference in the success of attempts to help and your feelings as well as your parents' feelings about difficult decisions and difficult changes."

Due to the enormity of the responsibility of caregiving for an aging parent, as well as the stress involved, many adult children tend to forget to care for themselves - or feel guilty if they need a break from caregiving.

Schempp is quick to point out that caregivers have higher incidence of depression as well as higher morbidity and mortality, which is why they must care for themselves as well.

"If caregivers don't take care of themselves, they are likely to hurt their own health and wellbeing," Schempp says. "It is not a gift to hurt yourself while trying to help someone else. If you get sick, then your loved one also suffers because you are not available to continue to be a caregiver.

"Taking care of yourself also reduces caregiver stress, which can reduce losing patience with your loved one, leading to being impatient or angry, which in turn leads to guilt because you may have acted in a way you did not want to."

Schempp will talk about the ways that seeking support and taking care of oneself can benefit both caregivers and the family members they are caring for.

Overall, she says, the role of caregiver is important not just in terms of caring for someone else but also in terms of honoring and caring for themselves.

End-of-life care: Honoring a family member's wishes

One of the most difficult challenges families can face is the loss of a loved one. And many families may not be aware of the support and services available to aid loved ones at the end of their life.

Ellen Cuozzo of Pathways Hospice wants those facing a life-limiting illness - and their loved ones - to know that hospice care is about facing the end of life with dignity and empowerment.

"The most important thing for people to know is that hospice is for people with a life-limiting illness that want to make the best of what time is left when there are no options for aggressive treatment or cure, as is the case of certain types of cancer, heart disease, liver failure, organ failure or simply general health decline - or for those that just don't wish to seek aggressive means of treatment."

"Hospice is the option for people who want to make the quality of their lives the best it can be."

Cuozzo will discuss hospice in greater detail and address topics such as:
* Making your needs known
* Benefit v. burden (Oftentimes, when people are looking at treatment options they don't realize the burden of some treatments that cannot prolong life in any appreciable way, Cuozzo says.)
* Advanced directives, power of attorney and living wills
* What makes someone eligible for hospice (hospice criteria)
* The benefits of hospice

"I think people want to know what to expect and many people don't know what to expect in regards to hospice care," Cuozzo says. "Another thing people will get from our conversation is that hospice is a program of great hope - hope that each day will be a good day, hope that we'll be able to manage symptoms. Hospice is about what you can have and you can do."

"Hospice a fabulous benefit because it looks at a person's physical, emotional and spiritual needs."

Hospice also integrates family members' needs during a very difficult transition, Cuozzo says.

"We don't just look that the patient, but also the spouse and adult children," she explains. "We serve the patient's family even after they have passed by educating their loved ones about what to expect and then following up with bereavement support. I think many people will be amazed at the support that is available after a loved one has passed away."

Hospice, Cuozzo says, represents a holistic approach to the patient, with the patient representing the center of care but also taking into account family members.

Get the support you need to be a better caregiver

To learn more from Donna Schempp of Family Caregiver Alliance and Ellen Cuozzo of Pathways Home Health, Hospice & Private Duty, join them on Tuesday, Jan. 13, from 1 to 3 p.m. in the Conrad E. Anderson M.D. Auditorium, Rooms A, B & C, located at 2500 Mowry Avenue (Washington West) in Fremont.

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