Thanks to private funding, 100% of every dollar donated to The Lustgarten Foundation goes directly to pancreatic cancer research.

Being a Caregiver

The caregivers are the ones who give the person with cancer physical and emotional care. Caregivers can be paid professionals with specific expertise, such as hospice physicians, nurses, social workers or home health aides. Oftentimes, however, caregivers are unpaid individuals who have a personal relationship to the patient, such as spouses, partners, family members, or close friends and are often a lifeline for the person with cancer.  This is not an easy role but a critical one. Caregiving for someone with a serious illness is a 24-hour-a-day, 7-day-a-week job, and most caregivers cannot do it alone.

Fatigue is a real issue with pancreatic cancer caregivers. There’s a cycle between fatigue and depression and lack of sleep, which caregivers often face. Due to the aggressiveness of the disease, pancreatic cancer caregivers often resist dealing with their fatigue because they feel they need to be ‘all-present’ for the patient.  This is not a healthy, cycle to start for you or for the loved one you are caring for. 

Things you should know as a caregiver:

  • You need to take care of yourself too.
  • Caregiving is both physically and emotionally taxing. Find someone trustworthy who you can talk to about how you are feeling; who can remind you that you need to take care of yourself
  • It is OK to have other people help you help your loved one.  Having assistance offers the caregiver an opportunity to rest and to recharge, so that they can provide better care to the patient.
  • You may want to consider reaching out to family, friends and other sources of support and accept offers of support.
  • You should speak with a member of the treatment team to inquire about possible respite services that may be available.
  • There are even some web sites that help caregivers develop support systems and avoid burnout.
  • It is important for caregivers to find time and ways to get out: whether to attend a support group and share their experience with others in a similar situation, or simply to take a 20-minute walk.
  • Realize there will be times that no matter how much you want to be by your loved one’s side, you just can’t get there. Don’t be hard on yourself.
  • It can be exhausting for caregivers to provide ongoing verbal updates to individual family members and friends. To ease this stress, patients and caregivers may want to consider the use of a Web site.

A note on work and caregiving.  Nearly three quarters of caregivers either work or have worked while providing care, and most have to make adjustments to their work life. Many have had to take a leave of absence from work to provide care and it is important to know that you do have workplace rights. The Family and Medical Leave Act (FMLA) of 1993 permits eligible employees to take up to 12 work weeks of unpaid, job protected leave during a 12-month period for specified reasons –including caring for a spouse, son, daughter or parent.

Community

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In-Depth Education

 

 

 

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Resources

Managing Practical Concerns

Cancer Survival Toolbox
This self-learn audio program is available free-of-charge from the National Coalition for Cancer Survivorship (NCCS). The program is designed to cover topics or skills that can assist individuals with cancer in meeting the challenges of their illness. It is appropriate for individuals facing any stage of the cancer disease, and includes helpful information for family members or caregivers of cancer patients.
 
CaringBridge
CaringBridge offers free, private Web sites for people facing a serious health event. Using a CaringBridge Web page, patients and caregivers can share updates, post photos, and receive messages of hope and encouragement through a guestbook.

Family Caregiving 101
This site provides caregivers with the basic tools, skills and information they need to protect their own physical and mental health while they provide high quality care for loved ones. The site provides assistance, answers, ideas and helpful advice.

Family Caregiver Alliance
1-800-445-8106
A public voice for caregivers, FCA offers practical tools and information, support services and other resources.

Lotsa Helping Hands
Lotsa Helping Hands is a private, web-based caregiving coordination service that allows family, friends, neighbors, and colleagues to create a community to assist a family caregiver with the daily tasks that become a challenge during a medical crisis, caregiver exhaustion, etc. Caregivers benefit from the gifts of much needed help, emotional support, and peace of mind, while volunteers find meaning in giving back to those in need.

Caregiver Action Network
1-800-896-3650
CAN educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. CAN reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well-being.

Well Spouse Association
1-800-838-0879
The Well Spouse Association is a nonprofit membership organization that advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner.
Home Care & Hospice

Cancer Support Community
Helpline: 1-800-658-8898
Multilingual Helpline: 1-877-658-8896
Caring Connections provides free resources and information to help people make decisions about end-of-life care/services before a crisis.

NCI Fact Sheet: Home Care for Cancer Patients
Includes information and resources for identifying home care services for individuals with cancer.

National Association for Home Care & Hospice 
NAHC produces a consumer guide, How to Choose a Home Care Provider: A Consumer's Guide.
Hospice Foundation of America

National Hospice and Palliative Care Organization
1-800-338-8619
Hospice Net
Information for patients and caregivers on end-of-life issues and bereavement.

Next Step in Care
Comprehensive information and advice to help family caregivers plan various transitions for patients.
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