Caregivers voice needs at AARP meeting


By Sue Cody


Jon Bartholomew 2The constant supervision of someone with dementia.


A lost ability to drive.


The turmoil that results when a routine schedule constantly changes.


Emotional burnout.


More than a dozen people shared stories of the frustrations and successes related to their demanding role as an unpaid family caregiver. Taking it all in was Jon Bartholomew, government relations director at AARP Oregon. Bartholomew organized “Community Meeting about Family Caregiver Respite,” held June 29 at the Astoria Senior Center. It was one stop on his statewide tour to gather insights from some of the 436,000 Oregonians who provide unpaid care for an adult loved one.


The insights will ultimately land in Salem. Bartholomew is leading a workgroup of stakeholders who will craft a proposal for caregiver respite or relief services, which the group will take to the Oregon Legislature this fall.


Those gathered in the senior center on the cool June afternoon included teachers, retirees, health care professionals, social service workers, farmers and others interested in improving the health and welfare of caregivers and their care recipients.


Respite improves everyone’s life


Respite is critical for both the caregiver and the person being cared for. Reports show patients remain in better health and suffer less stress with respite. Some caregivers report that respite improves their relationship with their loved one.


Many caregivers don’t identify as caregivers, Bartholomew said. They don’t think in terms of needing resources and are unaware of options. They don’t talk about caregiving, and many don’t realize the benefits of taking a break.


Bartholomew did a survey, where participants responded to stress levels and barriers to getting respite. Emotional stress far outweighed the other choices. Financial concerns, lack of access and physical barriers were also identified.


Yet successful home caregiving has important financial implications for Oregonians. If a price tag were put on the unpaid care provided in Oregon today, it would amount to $5.5 billion a year, Bartholomew said.


The majority of those ages 65 and older want to stay in their homes. If they needed caregiving, the cost would exceed $100 per day in the home, and an average of $65 per day in an adult day center. That is unaffordable for many families.


The attendees agreed that caregivers and those cared for both benefit from respite care. But the caregivers faced challenges, particularly their own resistance or from the care recipient. Some caregivers feel they are the only one who can provide the proper care. Some feel guilty if they leave to recharge themselves. Others don’t want a stranger in their home.


Solutions from Salem


The Astoria audience voiced strong support for establishing an adult day care center in Clatsop County, where caregivers can drop off their loved one for an hour or more, freeing them for personal time, errands, rest or handling business matters. Meanwhile, their loved ones would have time to socialize.


Other priorities that came out of the discussion:

           • Better access to medical care in rural areas

           • More funding for respite programs

           • Transportation

           • Trained respite caregivers

           • Training of medical professionals in respite needs for caregivers.


Current resources


The Aging and Disability Resource Connection of Oregon (ADRC) offers a guide to services for those with aging or disability needs. In Clatsop County, Michelle Lewis at the NorthWest Senior & Disability Services can guide people to services.


Oregon Care Partners offers training for family caregivers. Lewis said a Savvy Caregiver class will be held in August, that supplies powerful tools and paid family leave.


The Oregon Project Independence (OPI) offers funds for respite, but it often runs out of money.


The Older Americans Act has a family caregiver support program. Both OPI and this are operated by NorthWest Senior & Disability Services.


Some nonprofits, such as Parkinson’s Resource of Oregon and Southern Washington (PRO), The ALS Association and the National Multiple Sclerosis Society’s Oregon Chapter may have some support for respite.


The Way to Wellville supports these efforts as part of its focus on Health Care Access.


For information on the Savvy Caregiver class and other resources for caregiving in Clatsop County, contact Michelle Lewis at NorthWest Senior & Disabilities Service, 503-861-4202 or email michelle.lewis