Caregivers in ‘isolating and lonely’ struggle seek support
CHICAGO — Sandra Dennis recalls moving into her father’s Englewood 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, now lives in Richton Park, and tends to her daughter who suffers from health issues related to pulmonary hypertension. She tries to balance those duties with self-care, 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.”
Her story is one of many.
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.
AARP data from 2015 reported 1.56 million caregivers in Illinois — 330,000 in Chicago. And according to the AARP Public Policy Institute, more millennials are assuming the mantle of caregiver. 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. “Family caregivers across the country are, in many ways, invisible to the system, and they’re having to do a lot of the complicated responsibilities of caregiving with little to no support.”
Stress levels: Park Ridge resident 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.
In July, an elderly Niles woman fatally shot her seriously ill husband and then herself because, according to police, she struggled to care for him. Brown said such events speak to the stress of caregiving.
“We can sometimes think no one will understand how hard this is or what really goes on during the day,” Brown said. “The emotional toll of caregiving can be significant; it is isolating and lonely, and we really want people to know that there is support for them and there’s understanding and there is help. They don’t have to go it alone.”
In her effort to provide resources, including the National Caregiving Conference Nov. 8-11 in Rosemont, Brown also partners with Embracing Carers, a global initiative launched in 2017 that aims to increase awareness and discussion about the needs of caregivers. A recent survey conducted by the organization found that 47 percent of caregivers have feelings of depression, and almost 57 percent feel they need medical care/support for a mental health condition (i.e. depression, anxiety, stress) because of their role.
Accius says assessing your needs as a caregiver and reaching out for help are key. It’s also important to have a conversation with family and the loved one being cared for upfront. Pose questions such as: What are your family member’s end-of-life preferences? As a caretaker, what do you need to have a high-quality life yourself?
“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. “This is an issue that cuts across ideology, class, income, race — the whole nine yards. There’s an army of people — an organization of resources — out there to support you, and we want to meet you where you are.”
Keep in mind: Brown said it’s smart to look for resources on “your best day” — a time when help is least needed. She 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 such as the Alzheimer’s Association, a social service agency such as the 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 amazing 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 thin k that we’re not doing enough,” she said. “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.”
AARP’s Resource Center also offers a guide for first-time caregivers and 24/7 support hotlines: 877-333-5885 for English, 888-971-2013 for Spanish.