Much-Needed Tips for Caregivers

Over the past five years, I've become all too familiar with hospitals, nursing homes, rehab facilities and doctors' offices, as my parents, husband and other family members have faced life-threatening diagnoses and needed both acute and long-term care.

As a result, I've had to learn how to navigate the health care system and advocate for my loved ones. I've also found comfort in knowing I'm far from alone in this challenging life stage. 

According to data from A Place for Mom, nearly one in five adults in the U.S., or almost a million people, care for adults over 50 without getting paid. Caregivers are logging an average of 23.7 hours a week unpaid for those who live separately and 37.4 hours for those who live in the same house. 

Meanwhile, nearly one in four Americans are considered part of the "sandwich generation"— people who are either responsible for a child 18 and younger or helping support an adult child and have at least one parent who is 65; more than one in three members of this group are in their 50s, according to the Pew Research Center.

Putting on my "Hospital Rob" hat hasn't always been easy for me. As a longtime journalist, asking questions of people in authority comes naturally. But in my personal life, I don't always like to rock the boat. 

Finding the right balance between accepting the status quo and speaking up is critical to doing right by your loved ones and maintaining your sanity. Here are some things I've learned while logging the hours in waiting areas, hospital lounges and patient rooms.

Hospitals and health care facilities usually pay more attention to patients if they know someone is checking on them. If you're the point person, share your cell phone and contact info with staff, visit during rounds or daytime hours if possible, and accompany loved ones on outpatient appointments. 

It helps if you are named as your person's health care power of attorney, but advocating for them is necessary. Johns Hopkins found seven in 10 patients have someone as their health advocate, typically a spouse, relative, friend or trusted caregiver, who can accompany them to medical appointments and hospitalizations.

When you visit your loved one in the hospital or another medical facility, ask for their nurse or attending doctor to get a first-hand update. Take names, so you know who to request or reference the next time or during a follow-up call. 

If you can't be there in person, check in by phone, text or email. Remember that the hospital shift change is typically at 7 a.m. and 7 p.m., so you must time your checks accordingly.

You probably don't have a medical degree, and Google can only get you so far, so it's imperative to ask questions when you need help understanding a diagnosis or treatment. 

Also, you know your person's history and medications better than the caregivers, so you can help close any communication gaps between different medical practices, hospitals and even day shift vs. night shift. 

For example, when my 92-year-old mom was recently diagnosed with a heart condition, the cardiology team adjusted her drug regimen. I had to ensure everyone was on the same page and she got the correct dosages.

The more authority you bring to your interactions, the more likely you will get a timely response and your loved one will get the care they need. 

At the same time, it's essential to adjust your approach for your audience. Although an aide or receptionist can provide critical information, they're not decision makers who can change a care plan or intervene if there's a significant concern, compared with a floor nurse or a hospitalist who can.

Sometimes, you must let the process play out, whether your person is waiting for pain meds, an emergency room test or a specialist's return call. 

It's always a numbers game in a hospital setting. When my husband was in the intensive care unit of a university hospital because of a rare virus, he required near constant care (and received it) reflecting a ratio of one to two patients for each nurse. By contrast, each nurse on a regular floor might care for up to six patients so the response time will differ. 

It's not that your person doesn't deserve timely care in any setting, but it means figuring out what's realistic and what battles are worth fighting.

No one wants to be a difficult patient (or advocate), but the health care system is rife with problems with continuity of care. Sometimes, you must escalate a situation, whether to ask for the charge nurse or nursing home administrator or contact hospital patient relations to express your concerns. (The latter tends to get quick results but should be used sparingly for maximum effectiveness.)

The key is to keep your cool, no matter how upset you or your loved one may be, and always to get the name and contact info of the person you've dealt with or the person's manager or immediate supervisor.

It's ultimately about accountability, not pointing fingers. When my various loved ones have been in rehabs and were supposed to receive a certain number of sessions of physical therapy a week, or my mom needed a walker to navigate her hospital room and to stay limber, speaking up has helped ensure those promises were met and their stays could hopefully be that much shorter.

Everyone (including your boss) has a parent, spouse, kid or some other significant person who has been ill, so they will understand if you need time off or additional support because of a family health emergency. More than six in 10 family caregivers are likely holding down a job as they care for someone ages 50 and up. 

Within this group, more than seven in 10 caregivers 65 and younger are more likely to be employed, and two in three who provide 20 hours or less of care a week are more likely to work, according to research compiled by A Place for Mom.

Asking for forgiveness extends to other obligations, including attending family events, volunteering or coaching, and socializing with friends.

Caregiving, even if part-time, can take a physical and emotional toll. The Cleveland Clinic and Parade Media found that more than one in three caregivers say they have depression and anxiety, a rate that's 114% higher than for non-caregivers. 

In contrast, more than half say they can't skip a day from caregiving, despite seven in 10 agreeing they could use consistent "mental and emotional health breaks." For family members who are less directly involved in caregiving, especially if they don't live nearby, there are many ways to support the primary caregiver. 

The National Institute on Aging offers a range of tips, including helping manage the patient's finances and insurance claims, setting up home care and liaising with family and friends.

For me, the littlest self-care things have meant a lot, whether walking the dog after a long day at the hospital, eating all the ice cream, or muting my phone to watch a favorite TV show. Plus, I always try to remember the big picture: Whatever stress I'm experiencing as an advocate, it doesn't compare to being the patient.