The world of eldercare is one of noble intentions, no maps, and a success defined as not having failed. It is the realm of love, instinct, and a certain amount of resignation, with the comforting knowledge that Plan B is always “I quit my job and move in with Mom.” Most people don’t discuss it, and those that do usually treat it as they would retirement planning, if they discuss it at all. It is not an arrival, not a debut, but a carving-out — time taken from one’s most useful years and reorganized around someone else’s needs. It is not a temporary adjustment but a lasting change.
The role-reversal no one talks about
As a culture, we are unprepared to acknowledge that caring for our parents is an exercise in perpetual, one-way goodbye. That the decline of an older person is an unremitting enterprise, with precious few bounce-back opportunities after a hip replacement at 88 or a dementia diagnosis that erases, if only temporarily, the parent we knew. We talk ourselves into getting better, because to admit that it will not happen feels like admitting defeat. We have weaponized the word “aging,” turning it into a pathology, not a sunset. It has to stop. We need a new script for this moment in life — one that allows us all to talk plainly, and early, about the practicalities and the emotions. And we need it now.
Why “we’ll figure it out” fails
“We’ll figure it out” is a wonderfully elastic response to any question that has a constraint. It’s the equivalent of “It will all work itself out in the end,” and it works beautifully in the context of short-term eldercare needs. Your mother fractures her ankle and needs help for six weeks, then she’s back to her usual self. Your sibling can step in for a month, or take a leave of absence, or simply endure. There is an endpoint.
But there is no endpoint to chronic and progressive issues. Dementia does not pause for Labor Day weekend, and mobility loss due to arthritis or stroke rarely rebounds on a convenient schedule. The demands of more serious care, particularly care that requires an ongoing and open-ended commitment of time and energy, can no longer be met with improvisation. The shift has already happened. Each family member learns to adjust to the new normal, with the same endgame in mind: death. But no neighbor brings a casserole to the funeral.
The slippery slope
The assumption is that there will be some sort of tipping point — a hospitalization or fall or diagnosis. What most families discover, however, is that the signs of decline are often subtle, and easily overlooked, even by the parent who is struggling to adjust to the new normal. Things start to change in the realm of the IADLs: the Instrumental Activities of Daily Living. That’s the phrase used by one gerontologist I spoke with who described them as the “unnoticed tasks we all perform that contribute to our independent living.”
These tasks include managing medications, medical insurance, and doctor’s appointments; balancing the checkbook and paying bills; shopping for food and clothing; using the phone and the Internet; cleaning; lawn care and other home maintenance; cooking; and arranging for and attending doctor’s appointments and transportation.
The ability to manage these tasks is frequently the first sign that a senior is experiencing some level of decline. Understanding the difference between ADLs and IADLs is critical for families looking to hire home care for aging parents, because IADL support can be difficult to judge when families are already stretched thin. It may come late in the trajectory, after a fall or other crisis has already pushed the family toward more formalized care. It may also be applied to the wrong tasks.
The price of informal care
The sacrifices made by family caregivers — both in time and in financial opportunity — have long been documented. In fact, a survey by AARP/National Alliance for Caregiving puts the number of unpaid family caregivers in the U.S. at over 53 million, or 22% of the total population, with the majority reporting high levels of emotional strain. This is the unofficial cost of the continuous, around-the-clock care provided to aging parents — particularly by adult children — who sacrifice work opportunity and retirement assets. Caregivers are also said to experience poorer physical health than their peers who do not provide care since sleep, exercise, and their own medical needs are frequently put on hold. Marriages are adversely impacted when one spouse is consumed by caregiving for his or her parent. Sandwich generation caregivers — those caring for their parents while raising their own children — have no time for anything, threatening both their family responsibilities and their careers.
These challenges cannot be tied to a specific personality profile. Ask anyone to volunteer for unlimited, unpaid, and intensifying care without the benefit of a backup plan and you’ll find little willingness to do so. Burnout is not a hypothetical possibility; it becomes a real risk if informal caregivers are expected to provide ongoing care without professional assistance.
The fine line between informal and on
A simple way to differentiate between informal care and professional caregiving is to ask yourself this question: does the safety and wellbeing of your parent depend on you being constantly available?
If the answer is yes, then “informal” is no longer an option. And that’s a good thing. Because parents who suffer falls or other accidents may require round-the-clock supervision in the early recovery period. Those who have dementia or another cognitive impairment, or live with delusions or hallucinations, may also benefit from the expertise of a professional caregiver who can provide the constant presence and supervision that a family member may not be able to manage on a day-to-day or even hourly basis.
Reframing professional care as a responsibility
The guilt associated with hiring professional help is misplaced. If anything, it can reflect a caregiver’s difficulty in recognizing the limitations of family assistance. The decision to augment family care with professional caregivers is an indication that you understand the responsibilities you are taking on. It is also a responsible choice since it takes the pressure off you by filling the gaps and ensuring your parent receives the support he or she needs around the clock. While you are still the caregiver, you’re also the supervisor, which is a much easier position to be in — and a more responsible one, perhaps, since it allows you to continue to play the role of daughter or son, rather than overextending yourself trying to fill multiple roles without the benefit of professional training.
Respite care is often an excellent option for families looking to test the waters so to speak. Hiring help for a few hours per week or month is an affordable way to gauge the value of professional assistance while giving the caregiver time to recharge, and allowing the parent to become accustomed to the support. It also takes some of the pressure off the children, who can discuss the matter objectively with their other siblings as a group, rather than as individuals. That way, respite care can serve as an introduction to professional caregiving and a launching point for a more comprehensive care plan, without committing to a full-time caregiver.
Where siblings and support collide
A common family dynamic in eldercare is sibling rivalry, particularly when one sibling assumes most of the responsibility for aging parents with little to no assistance from the others. These situations can be complicated by the location and lifestyles of the siblings, as well as their financial and time constraints. The caregiver who ends up with the lion’s share of responsibility begins to feel taken advantage of, and the tension within the family unit grows. A clearly articulated plan with objective parameters can go a long way towards eliminating much of the guesswork and stress associated with eldercare, particularly when it comes to dividing the responsibilities among siblings. Such a plan is best designed with the guidance of a professional caregiver and/or geriatric care manager, who can serve as an impartial authority on the practicalities of in-home care, and bring objectivity to the process.
Families also tend to be blindsided when it comes to the financial side of care. The most common mistake made is to assume that once the crisis occurs, Medicare will pick up the tab. That it often does not is an unfortunate reality for most families who find themselves in the throes of an emergency and making difficult decisions about the future of their aging parent. In reality, Medicare only covers skilled nursing facility care, not independent living assistance, home health aide services, or companionship — which are considered non-skilled care. Families who fail to plan ahead end up spending more on a crisis than they might have budgeted for a less intensive level of care, not to mention the stress associated with facility placement rather than in-home support.
An actionable alternative to “we’ll figure it out”
“We’ll figure it out” is a response born from the assumption that someone will always step in. There is one thing children can do immediately in support of parents who are struggling to maintain independent living — and that is, in large part, the point. There is still time to think through the options and decide what you want to do, and how you want to do it.
Conduct a brutally honest functional assessment. Go over each of the IADLs and ADLs and ask yourself what the reality is. Is this what you believe your parent would want? You can have this conversation early on, and then put it aside until it needs to be revisited. The goal is to establish your parent’s preferences and preserve autonomy as much as possible, not to discuss the details of your options. The talk should be an exercise in dignity, where they get to tell you what they want, and you get to accept or reject it based on your own priorities.
None of this is likely to save you from ultimately assuming the role of your parent’s parent, if that is what is needed. But if you go through the motions, at least you can be certain you gave it an honest try.
