Filial Reality: What Brings Us Here
[ Lettuce begin with a research quote, as you'll find heavily interspersed throughout the course. ]
Many family caregivers report positive experiences from caregiving, including a sense of giving back to someone who has cared for them, the satisfaction of knowing that their loved one is getting excellent care, personal growth and increased meaning and purpose in one’s life.
Positive Aspects of Caregiving. American Psychological Association.
[ What a story of relational and personal potential.
A sense of purpose, love, and growth can be achieved through family responsibility and eldercare (both constitute what we call Filial Obligation). Wonderful.
And yet... is it realistic?
We can discuss the theoretical merits and relationship mending potentials of Filial Obligation all day long. Surely, parent-child dynamics have been repaired and spiritual growth hath been experienced during health and hospice care scenarios.
But.
You probably wouldn't be here if you were feeling enthusiastic, safe, hopeful, capable of "excellent care delivery" or in control of the situation you're facing or the one you've recently emerged from.
Amiright? (Hopefully, or else this isn't the course for you.)
So let's talk about the other side of the Filial experience. ]
The truth is: CAN Filial Duty be fulfilling? Yes.
But more realistically:
It's straining even under the best relational circumstances.
Then throw in unrepaired relationship rifts, de-legitimizing family dynamics, maybe some resentments, regular feelings of ambivalence...
And it can be a headspinning, guilt-laden, personally destructive experience attempting to
"do the right thing."
Filial Obligation and Filial Piety may offer us communal, prosocial, relationally stabilizing ideas and opportunities that can enrich and enable healthy lives...
And also they may offer us practical, cognitive, and resourceful catastrophes that we struggle to support ourselves through or recover from. Immense pressures and stresses that are difficult to resist and require sources of resilience we may not have.
... Which is especially true when the quality of the relationship in question is not "defined by positive emotional experiences or full of mutual respect and reciprocity." Nor is the surrounding family system "full of high functioning adults with apt emotional regulation skills."
But more on those things later.
[ For now, let's simply say:
You're in the right place if you've been having questions about yourself, your parent, your shared history, and/or your Filial torment.
- If you're wondering why this is so hard.
- If it seems like your best intentions don't match outcomes in reality.
(And, maybe, like other people aren't helping you in that regard.)
- If you've been disappointed in yourself for the way your psyche has responded to Filial Obligation.
- If you've assessed yourself trapped, sh-uilted your way to insomniatic meltdowns, fallen into frustrated rages, or felt soulfully bogged down with narratives of personal failings for the ongoing relationship dynamic that seems to be unfixable despite your efforts...
Well, you aren't 'wrong' for your perceptions.
You're not even unique.
In this course, we'll talk about how commonly Filial Obligation inspires an isolated-feeling existence of personal self-doubt and nonstop relational stress, and why these unwanted outcomes emerge. ]
What we want you to know:
- There are reasons why your head has been a hornet's nest.
- You aren't "bad" or "weak" or "an asshole" for struggling in a situation that fully envelopes
your chosen life.
- Caregiving burden is an individual, perceptual, experience that cannot be replicated
or "agreed upon" by onlookers.
- Your subconscious knows things you consciously deny, which influence those stress perceptions.
- You will face childhood pains and unrepaired relational wounds in the Filial process.
- There are both heightened risk factors and research-backed ways to support yourself through these practical and psychological difficulties.
- Ultimately: This is about realistic assessments of 'the greatest good,' choice, and self-care.
- You're allowed to make the decisions that support your health, even if they fly in the face of traditional convention or family expectations.
- Forced engagement with unhealthy players does not create an "excellent caregiving situation"
for you, nor them.
- And you aren't alone in making these decisions, or in coping with the aftermath of your choice.
To start this discussion, let's get a baseline understanding:
What's "normal" in Filial Duty?
[ Because it might be very different than what you're assessing.
Let's work on that self-stigma you might be feeling.
When you're surrounded by cultural narratives that don't match your reality it can be difficult to get your feet on the ground in order to find situational acceptance and make the best choices.
The social pressure and feeling of wrongness can be overwhelming, on top of an already-flooding experience.
Time to reveal what's common in 'typical' Filial Caregiving scenarios. (i.e. positive-enough parent-child histories with present day supports available for each individual and no diagnosed psychological pathologies.)
Here are common characteristics of Filial Duty: ]
[ Without saying anything, common sense and familiarity with the issues makes it obvious how one challenge bleeds into the next and creates a vicious cycle.
- From guilt, we spawn a litany of additional self-punishments and fears.
- Physical and relational destabilizing factors emerge with time and inhibited attentional capacity.
- It can become so overwhelming that we fantasize of a 'way out' without seeing a path forward.
- These experiences increase negative self-assessment and further promote guilt.
Filial Duty is not a walk in the park.
No variety of caregiving is associated with strictly positive outcomes. In fact, there are a host of negative outcomes commonly seen in caretaking scenarios of all manner.
But don't take my word for it.
Let's spend some time with this easy-reading paper. ]
Impact of Caregiving on Caregiver Mental and Emotional Health
Caregiver Health
By Family Caregiver Alliance
In cooperation with California’s Caregiver Resource Center
Reviewed by Moira Fordyce, MD, MB, ChB
Evidence shows that most caregivers are ill-prepared for their role and provide care with little or no support,4, 5, 6 yet more than one-third of caregivers continue to provide intense care to others while suffering from poor health themselves.7 Studies have shown that an influential factor in a caregiver’s decision to place an impaired relative in a long-term care facility is the family caregiver’s own physical health.8, 9, 10, 11
A substantial body of research shows that family members who provide care to individuals with chronic or disabling conditions are themselves at risk. Emotional, mental, and physical health problems arise from complex caregiving situations and the strains of caring for frail or disabled relatives.
Today, medical advances, shorter hospital stays, limited discharge planning, and expansion of home care technology have placed increased costs as well as increased care responsibilities on families, who are being asked to shoulder greater care burdens for longer periods of time.12, 13 To make matters worse, caregivers are more likely to lack health insurance coverage due to time out of the workforce.14
These burdens and health risks can hinder the caregivers’ ability to provide care, lead to higher health care costs and affect the quality of life of both the caregiver and care receivers.
[ To summarize: Most caregivers don't feel prepared. Over 33% are in physical decline, but continue to provide for their caretaker. If we can manage to overcome our own ailments, we're more likely to maintain the Filial Duty ourself vs. a healthcare facility.
And this decision comes with massive risk for the caregiver. ("Emotional, mental, and physical problems arise from complex caregiving situations and strains...")
Because of our fucked healthcare system, families are increasingly shouldering this burden and for longer periods of time. This comes with the added economic complication of inhibiting working potential.
All of these factors affect quality of life and caregiving performance for both parties.
Seems significant, doesn't it?
Yap. But let's take a skeptical approach and find out the full details before we jump to conclusions.
Sure, burdens and risks exist. We're not equipped for this new job and it might become more of a "career" than anticipated.
But how bad could it really be? "These are our family members and loved ones, afterall."
Welp. Let's count the ways we're negatively effected (and affected) and measure the significance of these common conditions.
The below information is again from the above resource. Caregiver Health ]
Caregivers show higher levels of depression.
- Studies consistently report higher levels of depressive symptoms and mental health problems among caregivers than among their noncaregiving peers.15, 16, 17, 18, 19
- Estimates show that between 40 to 70% of caregivers have clinically significant symptoms of depression, with approximately one quarter to one half of these caregivers meeting the diagnostic criteria for major depression.20
- Both caregiver depression and perceived burden increase as the care receiver’s functional status declines.21 Thus, higher levels of clinical depression are attributed to people caring for individuals with dementia. Studies show that 30 to 40% of dementia caregivers suffer from depression and emotional stress.22, 23
- Depression and anxiety disorders found in caregivers persist and can even worsen after the placement of the patient in a nursing home. Many caregivers who institutionalize their relative report depressive symptoms and anxiety to be as high as it was when care was in the home.24
- Depressed caregivers are more likely to have coexisting anxiety disorders, substance abuse or dependence, and chronic disease. Depression is also one of the most common conditions associated with suicide attempts.25
Caregivers suffer from high levels of stress and frustration.
- Caregivers have higher levels of stress than noncaregivers.26 They also describe feeling frustrated, angry, drained, guilty or helpless as a result of providing care.27
- Some 16% of caregivers feel emotionally strained and 26% say taking care of the care recipient is hard on them emotionally.28 An additional 13% of caregivers feel frustrated with the lack of progress made with the care recipient.29
- Caregiving can also result in feeling a loss of self identity, lower levels of self esteem, constant worry, or feelings of uncertainty.30 Caregivers have less self-acceptance and feel less effective and less in control of their lives than noncaregivers.31, 32
- More than one-fifth (22%) of caregivers are exhausted when they go to bed at night, and many feel they cannot handle all their caregiving responsibilities.33
- Caregivers who experience chronic stress may be at greater risk for cognitive decline including loss in short-term memory, attention and verbal IQ.35
Health Consequences for Women Caregivers
- Research shows that female caregivers (who comprise about two-thirds of all unpaid caregivers)41,42 fare worse than their male counterparts, reporting higher levels of depressive and anxiety symptoms and lower levels of subjective well-being, life satisfaction, and physical health than male caregivers.43,44,45
- According to one study, there is a dramatic increase in risk of mental health consequences among women who provide 36 or more hours per week of care to a spouse.46
- In a national survey on caregiver health, more than one in five (21%) women surveyed had mammograms less often.47
Stressful caregiving situations may lead to harmful behaviors.
- As a response to increased stress, caregivers are shown to have increased alcohol and other substance use. Several studies have shown that caregivers use prescription and psychotropic drugs more than noncaregivers.37, 38
- Family caregivers are at greater risk for higher levels of hostility than noncaregivers.39
- Spousal caregivers who are at risk of clinical depression and are caring for a spouse with significant cognitive impairment and/or physical care needs are more likely to engage in harmful behavior toward their loved one.40
Caregivers are in worse health.
- About one in ten (11%) caregivers report that caregiving has caused their physical health to get worse.48
- Caregivers have lower levels of subjective well-being and physical health than noncaregivers.49, 50 In 2005, three-fifths of caregivers reported fair or poor health status, one or more chronic conditions, or a disability, compared with one-third of noncaregivers.51 Caregivers also reported chronic conditions (including heart attack/heart disease, cancer, diabetes and arthritis) at nearly twice the rate of noncaregivers (45 vs. 24%).52
- Caregivers suffer from increased rates of physical ailments (including acid reflux, headaches, and pain/aching),53 increased tendency to develop serious illness,54 and have high levels of obesity and bodily pain.55
- Studies demonstrate that caregivers have diminished immune response, which leads to frequent infection and increased risk of cancers.56, 57, 58 For example, caregivers have a 23% higher level of stress hormones and a 15% lower level of antibody responses.59 Caregivers also suffer from slower wound healing.60
- The physical stress of caregiving can affect the physical health of the caregiver, especially when providing care for someone who cannot transfer him/herself out of bed, walk or bathe without assistance. Ten percent of primary caregivers report that they are physically strained.61
Caregivers have an increased risk of heart disease.
- Caregivers exhibit exaggerated cardiovascular responses to stressful conditions which put them at greater risk than noncaregivers for the development of cardiovascular syndromes such as high blood pressure or heart disease.62, 63
- Women providing care to an ill/disabled spouse are more likely to report a personal history of high blood pressure, diabetes and higher levels of cholesterol.64
- Women who spend nine or more hours a week caring for an ill or disabled spouse increase their risk of heart disease two-fold.65
Caregivers have lower levels of self-care.
- Caregivers are less likely to engage in preventive health behaviors.66
- Spousal caregivers who provide 36 or more hours per week of care are slightly more likely to smoke and consume more saturated fat.67
- Compared to noncaregivers, women caregivers are twice as likely not to fill a prescription because of the cost (26% vs. 13%).68
- Nearly three quarters (72%) of caregivers reported that they had not gone to the doctor as often as they should, and more than half (55%) had missed doctors appointments.69
- Caregivers’ self-care suffers because they lack the time and energy to prepare proper meals or to exercise. About six in ten caregivers in a national survey reported that their eating (63%) and exercising (58%) habits are worse than before.70
- Caregivers in rural areas are at a greater disadvantage for having their own medical needs met due to difficulty getting to the hospital and doctor.71
Caregivers pay the ultimate price for providing care—increased mortality.
Q: "How bad could it really get?"
[ There's your A: "Early death."
And a whole litany of other psychological-emotional-physical health problems leading up to the grand finale. (Or, the "great escape," as we'll soon discuss.)
Here are some cliffnotes that stuck out from the above data.
Higher Depression
40 to 70% of caregivers have clinically significant symptoms of depression
one quarter to one half of these caregivers meeting the diagnostic criteria for major depression
Higher Frustration and Stress
16% of caregivers feel emotionally strained
26% say taking care of the care recipient is hard on them emotionally
loss of self identity, lower levels of self esteem, constant worry, or feelings of uncertainty
Cognitive Decline
More than one-fifth (22%) of caregivers are exhausted when they go to bed at night
may be at greater risk for cognitive decline; loss in short-term memory, attention and verbal IQ
Worse Outcomes for Women (why not)
two-thirds of all unpaid caregivers
higher levels of depressive and anxiety symptoms
lower levels of subjective well-being, life satisfaction, and physical health than male caregivers
Harmful (High Risk and Abusive) Behaviors
increased alcohol and other substance use
greater risk for higher levels of hostility than noncaregivers
more likely to engage in harmful behavior toward their loved one
Physical Health Failures
three-fifths reported fair or poor health status, one or more chronic conditions, or a disability
chronic conditions (heart attack/heart disease, cancer, diabetes and arthritis) at nearly twice the rate of noncaregivers
23% higher level of stress hormones and a 15% lower level of antibody responses
slower wound healing
Higher Rates of Heart Disease
exaggerated cardiovascular responses to stressful conditions
Women who spend nine or more hours a week.. increase their risk of heart disease two-fold
Lower Self-Care and Health-Prevention
Nearly three quarters (72%) of caregivers reported that they had not gone to the doctor as often as they should and more than half (55%) had missed doctors appointments
Increased Mortality
63% higher mortality rate than noncaregivers of the same age
The fact being:
You aren't busted for experiencing any of these things.
You are, actually, rather average.
(sorry?)
And while it doesn't fix any of the above issues or their chronic torture-making, I hope that knowledge calms at least some of the self-doubting narratives that might be rattling your brain.
If not? Hey, we're just getting started.
Now that we've been introduced to the not-so-sunny results of long-term caregiving, let's take a step back and discuss what's driving so much of the dysfunction:
(The culturally pressured foundations for overcommitment, negative self-appriasals, and stress-depression-entrapment spirals that we'll talk about in great depth.)
Meet you in the next lesson.
Let's get "Pious." ]
