Family caregivers, on average, devote 23.7 hours a week to providing care. Roughly 1 in 5 family caregivers has experienced serious financial strain due to caregiving (AARP and the National Alliance for Caregiving). This is not a hobby. It’s a part-time job with no paycheck, no benefits, and no job description. The families who do well by it aren’t just seeing it through the lens of ‘love’ – they’re treating it as a managed enterprise.
It’s that very mindset shift that separates out the people who throw in the towel after just one year from those who persist without collapsing their health or personal finances.
Reframe The Role Before Anything Else
In most cases, people slide into caregiving without realizing it. A parent needs help with groceries, then with medications, then with bathing. Next thing you know, you’re responsible for executing a full care plan although you never had a meeting about it.
The admittedly less emotional but more functionally useful answer is to write down your parent’s medication schedule, and any dietary restrictions. Write down any physical therapy they’re supposed to do, and how frequently they need to be moved between activities of daily living (a metric for care level is how often they need help “bathing, dressing, eating, moving around the house”). Write down what medications need to be administered and what other treatments are part of caring for incontinence or bedsores. Write down what cultural activities your parent enjoys and how often they are being encouraged to engage with them.
This does two things: it’s an honest accounting for what your role as a caregiver actually entails, and it’s a clear hand off for any other caregiver or home health aide if you need a break. The point isn’t the documentation necessarily, it’s that the documentation forces you to confront just how much you’re doing.
Understand What The Financial Options Actually Are
Most families miss out on tapping such significant resources. Many states maintain Medicaid waiver programs allowing public funds to foot the bill for home-based care in lieu of nursing home placement – and through these programs, in some cases, a family member can be a compensated caregiver.
For instance, if you’re in Pennsylvania, getting paid to care for a parent in PA can be a reality if your parent is on Medicaid and meets other eligibility criteria. Long-term care insurance policies frequently include family caregiver coverage. FMLA supplies job protection for employees who decrease their hours or take leave while they’re providing care, although it doesn’t cover lost wages.
None of these things are simply given to you. You have to ask. You have to serve as part of the relay system of information passing between your impaired relatives and officialdom. You have to work through an array of agencies and often step hard on the gas to see a single red cent of what is out there. But the resources are there. And even if you manage to beget some of them, that doesn’t mean you’re a bad person. It means you’re embedded in the large-scale operation of the healthcare industry, rather than removed from it.
Distribute The Work Before Resentment Does It For You
In most cases, one individual will assume responsibility for the majority of the job. It is usually the person who lives nearest or the person who said yes first. The sandwich generation, which consists of adults who raise children and care for elderly parents, is familiar with this situation. The invisible work adds up quickly.
The responsibility can be shifted by regularly employing a shared calendar or a family communication application. When everyone can see that you have a doctor’s appointment on Thursday and that you picked up medications last week, it’s difficult to be idle. Rather than asking for general assistance, delegate specific tasks. The question “Can you take Dad to his appointment on the 14th?” elicits a yes or no response. “Can you help a bit more?” elicits no response.
Make The Home Environment Work Harder
Home modifications should not necessarily be costly to be efficient. Before thinking about a redesign, focus on the easy, inexpensive solutions: install handlebars in the bathroom, apply high-contrast strips on stair noses, install nightlights, replace doorknobs with door handles.
These are not just aesthetically pleasing changes. Falls are amongst the most common causes of severe injury among the elderly, and most of these incidents occur at home. A universal design strategy is a sensible approach, i.e. alterations that make the living environment safer for everyone, and not just the elderly individual with mobility issues. A resistant parent is also more likely to accept this type of change, as they don’t wish to be reminded of a hospital in their living space.
Cognitive impairment also impacts changes to the living environment. Hazards need to be eliminated, and a familiar setting should be promoted if your parent has dementia or Alzheimer’s. This may include sorting and clearing cabinets, eliminating visual clutter, or following specific routines to avoid confusion.
Build Maintenance Into The Routine
Isolated from the outside world, your aging parent can suffer cognitive and emotional declines, while you, isolated from the world outside your caregiving role, can suffer in other ways – ways you might not even recognize until the damage is done. Respite care is designed for exactly this scenario. A few hours with a home health aide twice a week? A short stay at a local program? Not optional. The whole system depends on it.
Home can work. It works even better when there are structure and breaks built-in. It works best when there is money to support the whole thing, with honesty about what it really costs everyone involved.
