Family caregivers have concerns about managing multiple roles and responsibilities.
These concerns include 1:1 care, emotional and social support, and care monitoring, coordination, and advocacy. Physical stress, worry, and emotional overwhelm are shared caregiver experiences.
Information gaps exist in underestimating the type of information to manage disease progression and daily care needs. Other gaps include: identifying services, managing life changes, and navigating medical and legal responsibilities. Caregivers are uncertain where to turn to receive accurate, reliable, and trustworthy information.
Caregivers receive satisfaction from providing good care for loved ones. Confidence grows from learning to manage difficult situations. The challenges of assisting with daily personal care results in poor sleep and physical injuries from transfers, lifts, bathing, and repositioning.
Providing emotional and social support requires partnership, cooperation, and finding the middle ground to support family participation. This includes: providing companionship, participation in hobbies and activities. Managing family conflict and differing opinions can be emotionally draining.
Caregivers come to me for support about significant conflict and disagreement about care needs within the family. Families are embarrassed about difficulty “getting along.” In high stakes care situations, where care is complicated and multiple individuals are involved, managing family conflict is a regular part of caregiving.
The most time-consuming aspect of caregiving responsibilities is monitoring care, coordinating with the healthcare system, and advocating with service providers. This is another area of high conflict.
Gaps exist between healthcare opinions of care versus family desires. Bias exists against treatment for individuals with dementia. Service providers may not meet family expectations. Gaps in care recommendations and coordination occur. Family caregivers must be the collaborators to close gaps in care and treatment.
Caregiving is hard work; both stressful and rewarding. The stress is constant, relentless, and ongoing. Caregivers benefit from seeking support. The Internet offers technologies that support live on-line support groups and programs. Research confirms these programs to be effective in reducing caregiver stress, anxiety, depression, and in building confidence. More information about caregiver support services can be found at www.PamelaDWilson.com
Editor’s Note: This article was submitted by Pamela D. Wilson, MS, BS/BA, CG, CSA. Pamela is a caregiving expert, advocate, and speaker who solves caregiving problems by offering live-online caregiver support and programming. She may be reached at 888-393-7754 or by email at Inquiry_For_Pamela@pameladwilson.com