En español | Twenty-four hours in a day doesn't feel like enough time. I genuinely believe I could get everything done if the day held about four more awake hours. But it doesn't and so I don't. The house isn't as clean as usual. We eat a lot of pre-prepared meals. Sweatpants are my uniform (although, in the year 2020, aren't most of us dressing more casually?). This article is two days late to my editor. In my current daily juggling act as a compound caregiver, some balls are going to get dropped.
A rise in compound caregiving
Compound caregiving means providing care to two or more people at once. It's not uncommon. A whopping 24 percent of caregivers care for more than one adult person. This number is up significantly from even five years ago.
Multi-person caregiving can occur several times throughout life, at different stages. Sandwich generation caregivers will assist their children and parents for years. Older adults may provide care for a spouse and grandchild together. Rural and multigenerational households frequently find more than one person in a household needing care. For anybody, it is a possibility and it can come sooner than you think — or when you don't expect it.
When I first considered writing this article, I reflected on several personal experiences. I recalled driving from my mother's first chemotherapy appointment straight to a hospital an hour away to attend an aunt's mastectomy. Supporting a relative when she cared for her adult son with intellectual disabilities and her husband with cancer simultaneously. The time when my husband was physically incapacitated for months when our child was 2 years old. Those experiences — and working professionally with families that have multiple care recipients under one roof — have helped me to understand the complexities presented when two people need your help at the same time. In my mind, I had some decent tips and tools for the compound caregiver.
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An unexpected change
And then suddenly ... I became an active caregiver again. My husband reinjured himself and is unable to stand or walk. Our child is not a toddler anymore, but she is still young and needing lots of love, time and attention. My spouse can give love and attention aplenty, yet can't manage the day-to-day parenting tasks. We are now almost a month in and we are uncertain about how long his recovery will be. This new reality made me realize how important it is to take my own advice about compound caregiving, seek the advice and recommendations of others, and be open to learning more every day (especially about how to adapt to caregiving during a pandemic) to prepare for the months ahead.
More than just double duty
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.