Caregivers come out of the shadows to get support, overcome isolation
There are resources to help with the physical, emotional toll of care
CHICAGO— Sandra Dennis recalls moving into her father’s Chicago home after he started showing signs of dementia in his late 70s. She recalls the mental and physical drain of caring for him, including a back injury requiring surgery.
Dennis, 65, also tends to her daughter who suffers from health issues related to pulmonary hypertension. She tries to balance those duties with selfcare, including keeping her shoulder healthy after a torn rotator cuff also required surgery.
“It can be isolating. It is stressful, but you do it because it’s someone you love,” Dennis said. “But it takes a toll on you physically and mentally.”
According to AARP, 40 million American adults support ill, disabled or aging family members with needs like bathing, meal preparation, shopping and help with medical and nursing tasks. They navigate the health-care system on their loved ones’ behalf and advocate for them when talking to doctors and care facilities, all to help family members stay at home.
These people often alter their own daily routines and put their lives on hold to ensure a loved one has the support they need. The role can be highly stressful and isolating, but as caregivers step out of the shadows, more and more resources are becoming available.
“You have been a caregiver, you are caregiving or you’re likely to become a caregiver ... This is something that’s going to impact all of us at some point in our life,” said Dr. Jean Accius, vice-president of AARP’s Public Policy Institute.
Denise Brown has been a caregiver for her 87-year-old father and 83-year-old mother since 2004 and created a resource for others with her website Caregiving.com. It features blogs, daily online chats (holidays included), podcasts, webinars and more. Brown has conducted an informal, ongoing survey of caregivers for more than two years and found their average stress level to be 4.15 out of 5.
Accius says assessing your needs as a caregiver and reaching out for help are key.
“The point is to have a conversation with the person (being cared for) or the family members to come up with a plan that takes into account (their needs) as well as the skill sets in the family, so it’s really a team-based approach,” Accius said.
Brown offers five things to keep in mind during the journey.
“If you are struggling, it’s not because you are failing. It’s because what you’re doing is really hard;”
If you need help and aren’t sure where to start, reach out to your doctor, local area agency on aging, a disease-specific organization like the Alzheimer’s Association, a social-service agency like United Way, or your employer’s Employee Assistance Program;
If the doctor you contact can’t offer suggestions, nudge him or her to create a list of resources. Tell the doctor and staff, “I know I’m not the only one. ... You’ll be doing us all an amaz- ing service;”
Find ways to relax. “If we can find even just a few minutes in our day to release the worries, even if it’s just for five minutes to relax, that can help us,” Brown said;
Make self-care a priority. “We have a tendency to think that we’re not doing enough. I think it’s important for us to sit still for a few minutes every day and know that we are doing enough — that our work and our caring and our love is enough.”