The Nonstop Juggle of Compound Caregiving

Compound caregivers report physical exhaustion, lack of time to attend to personal needs, less time to work, and increased loneliness or depression. One factor that sets compound caregivers apart from other caregivers is the sheer amount of time spent helping their care recipients. One study found that compound caregivers reported an average of 52 hours a week on caregiving duties.

For me, it is not just about the time spent on caregiving tasks (fetching ice packs and coordinating and attending doctors’ appointments for my husband and tending to my daughter's needs). In addition, there is a good amount of time spent performing my husband's usual contributions around the home. That means twice the dishes, twice the cleaning, twice the litter box scooping (easily my least favorite, although I love the kitty cat dearly!). Because we work together, I am also managing his in-office tasks while he cannot leave the home. It became clear very early on that I cannot handle it all without assistance. Finding, asking for and accepting help are key pieces to successful caregiving and the well-being of the compound caregiver.

Considerations for accessing help

Many caregivers experience isolation in some form. For example, rural caregivers tend to be isolated from communities and services. Compound caregivers experience isolation because they are so entangled in their caregiving lives. And now, during the time of the pandemic, isolation has affected us all in some way.

Visitation may be limited for a facility-bound care partner. You may have difficulty finding friends or relatives who are willing to drop in to see your care partners or assist with your chores at home, maybe because they are immunocompromised and still quarantining. Or perhaps you are isolating so as to not compromise your care partner with a chronic illness. Your regular outlets for caregiver self-care (meeting friends for lunch or attending a religious service) may not be possible right now. It's hard.

Still, don't give up on finding your helping hands. Is it possible to consolidate households with a family member who could help? There are proven benefits to multigenerational living. Maybe it's time to consider adding more people to the household to help you with day-to-day living.

Take a break

Respite care is an essential caregiver need, and new programs for respite care are being developed. Your employer may even offer respite care as a benefit. If relatives are able to offer some time with your loved ones, don't be shy in asking (more on that below).

Also consider setting up a “caregivers’ pod.” Do you know other caregivers who could give you a break? We understand the importance of respite care more than anyone. The first person to help my family was a friend who had just cared for her husband through cancer. She saw I needed a break to attend to my job and took my husband to his therapy. Caregivers just get it.

Outsource jobs when possible

Scheduling daily tasks and organizing are a large part of the compound caregiver's day. Even though it may not feel like it, some of this can be outsourced. Just the simple act of delegating your caregiving calendar to someone else and asking that they handle medical and insurance paperwork can save you hours. In addition, setting up an online planner or meal sign-up will allow others to help you within their capabilities, without your initiating the request. Family members or friends can manage these calendars, paperwork and online planners from anywhere and on their own schedules.

For those caring for a parent or grandparent, it can be challenging to get siblings and other family members to lend their time and talents to help lighten the load. If you all need help getting on the same page and creating a plan, a mediator could assist in working through your conflicts. A family contract can formalize everyone's roles and responsibilities.

Ask for training

Finally, push for training and do not feel that you have to figure it all out independently. You may be more likely to be providing complex care than other caregivers. Performing medical or nursing tasks or dispensing multiple medication regimes for multiple people would be a stress on anybody. Ask your loved ones’ doctors for training and find out where you can use professionals, if possible. A care manager who handles medication management alone can make sure medications are taken according to directions and on time, which can prevent complications or even hospital readmissions. If you feel that your care partners’ medical providers have not adequately prepared you to help a loved one at home, advocate to get the instruction you need.

Compound caregiving is tough, but so are caregivers. If you have any of your own tips and techniques that have helped you care for others successfully, please share them in AARP's Online Community so others can benefit from your expertise.