AARP Hearing Center
Vidhya Nagarajan
Editors asked AARP Family Caregivers Discussion Group members and other caregivers to submit pressing questions they’d like family therapist and clinical psychologist Barry Jacobs to tackle in this column. Jacobs took on this hot-button topic.
How can a caregiver maintain a relatively positive outlook while also protecting against huge disappointment when good things don’t happen?
—DN, Millersville, Pennsylvania
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Jacobs: That’s a great question. It captures, in one line, both sides of an age-old debate about the ideal attitude for tackling all of life’s endeavors, including family caregiving.
On the one hand, the optimists among us will always strive to focus on the positive aspects of any situation and expect that things will turn out all right. It is an approach that works fairly well for most people at least some of the time. Psychological research has found associations between optimism (but not unrealistic, pie-in-the-sky overconfidence) and better health, greater happiness and longer life — all desirable outcomes for any caregiver.
On the other hand, the pessimists among us will always strive to keep their expectations low so that their bubble won’t burst if things don’t go well. They deny being “negative”; instead, they usually argue they are being realistic while those willfully deluded optimists are blithely ignoring the dangers around them.
Your question suggests that, as a caregiver, you are trying to find a middle path between the two. Maintaining a positive attitude toward caregiving could bolster your resilience and lift your care recipient’s spirits. But guarding against huge disappointment by entertaining the possibility that bad things could occur — for instance, your loved onecould fall, experience a medical setback or die — may ultimately protect your emotional well-being. Sometimes, this balance between optimism and pessimism is called “cautious optimism.”
What does that middle path for caregivers look like? It requires the ability to simultaneously hold on to both hope and the prospect of further decline. That means getting real — educating yourself about your care receiver’s condition and its potential “negative” trajectory and then doing whatever you can, within the limitations of your knowledge, skills and power, to help prevent that outcome. Here are ideas for how caregivers can create that middle path for themselves through appropriately pitched goals, prudent contingency planning and acceptance:
Aim for support and comfort, not a cure
Most caregivers base their expectations of how their care receiver’s condition will progress on what doctors say is likely to happen. But some are skeptical of medical advice and believe they can overcome the odds by providing such exceptional care that their care receiver will thrive, or at least stabilize rather than deteriorate.
For example, a caregiver might know that people with Parkinson’s disease often have poor balance but still convince themselves that they can keep their care receiver so strong and limber that they will never fall. I have also met caregivers who thought that, through force of love, will and effort, they could stop or even reverse the cognitive decline of their family members with dementia.
It’s not wrong to aim high. As the old saying goes, “A person’s reach should exceed their grasp.” But the higher and more improbable the goals, the more likely caregivers are to be deeply disappointed, especially if they judge their worth by achieving those ambitious objectives. Aiming to provide compassionate support and comfort, not a miraculous cure, is the surer measure of your success.
Planning for good and bad contingencies
To find the middle path, you will need to prepare yourself for a range of possible outcomes or contingencies. In other words, you can “maintain a relatively positive outlook” but still hedge your bets and protect yourself from being disappointed by planning for how to handle caregiving’s many “what-ifs.”
For instance, what if your care recipient eventually needs more hands-on physical help with bathing and grooming than you are comfortable providing? Perhaps you have anticipated this and have proactively talked with other family members about possibly stepping up to provide such help. What if your care recipient lives much longer in a disabled state than you are expecting? Maybe you have had the foresight (and good fortune) to save money just in case to pay for the support services they will need. What if they are in terrible pain? Perhaps you have already learned about a range of medical and behavioral pain-reduction methods and are ready to help them get as much relief as possible.
Prudent contingency planning won’t give you perfect control, but it is far better than wishfully thinking that change won’t occur or dealing with challenges only when you must — i.e., “I’ll cross that bridge when I get to it.”
Acceptance and grief
More from Barry Jacobs
My Mom Needs Caregiving Help but Won’t Accept Any. It’s Stressing Me Out
‘Being a Caregiver Ruined My Sleep’
My Dad Won’t Listen to Me About Paying for Mom’s Care. How Can We Agree?
My Mom Wants Me to Be Her Caregiver, but She Won’t Move Near Me to Make It Easier
Our Long-Distance Sister Questions How We Care for Aging Parents
Even the most careful planning, however, may not account for what can occur in caregiving. Your care recipient’s medical condition may progress much faster than anyone predicted, or they may contract a separate illness entirely. Family members who promised to help may suddenly disappear. The care receiver whom you expected to hang tough may give up instead.
These would be disappointing developments, to be sure. Ultimately, you have little choice but to accept them, though. Despite your positive outlook and concerted efforts, caregiving — spurred by complex illness and disability and shaped by stress and complicated interpersonal dynamics — will play out as it will.
It is a short step psychologically from acceptance of a situation to grief about its bad outcome if necessary. You are then left with mourning your care recipient’s losses before they die, as well as their eventual death. There is also grieving what you wanted to accomplish but could not; that’s the crucial message in the Serenity Prayer about accepting things you cannot change. Is that hugely disappointing? You’ve done your best, however imperfectly, and likely made a difference — even if not all your high hopes are fully realized.
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