Introduction: Weight of Caregiving

[ In our last lesson we learned about Filial Obligation driven by Filial Piety. 

These concepts tell us it's "correct" to care for our family members as a central cornerstone of our lifetime. It's our duty and our honor to provide Filially. We'll later learn that we personally benefit from these responsiblities, according to Confucianism. 

But the merits of Filial Obligation extend far beyond cultural theories. Even the scientific literature features mention of personal and family-wide benefits.

"They" say: 

Caregiving, although at times stressful, can be emotionally rewarding because it can affirm family ties, honor past service the caregiver received from the person now needing care, and save family resources. (Adelman, et al. 2014)

Yes.

And also, at times Filial Obligation is not nearly emotionally rewarding enough to compensate for the mental, physical, material, and negative emotional costs. 

And also, also, the pressure to honor those parents through Filial Devotion can, itself, create additional strain for the individual, based on their perceptions of personal capacity and performance.

So let's not ignore the reality of what's being faced. 

A clusterfuck of perceptual and objective stresses that can snowball into psychological hellscapes, especially over significant lengths of time.

Let's talk about... ]

The ramifications

Caregiver burden: a clinical review.
Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS.
JAMA. 2014 Mar 12;311(10):1052-60. doi: 10.1001/jama.2014.304. PMID: 24618967.

The Patient’s Story:

Mrs D, at 84 years of age, was the primary caregiver for her functionally impaired 86-year-old husband and shot herself 3 times in a suicide attempt. Mrs D’s family did not perceive the severity of the caregiver burden as a family picnic was planned for the day of her attempted suicide. Mrs D did not leave a note and later stated she fully intended to kill herself. While recovering in the hospital, she expressed relief at not having caregiving responsibilities. Two months later, her husband died, which Mrs D described as a release for her.

Mrs D did not have a primary care physician or attend any medical appointments for her own health needs, but she often accompanied Mr D to his appointments. Her 2 adult daughters lived nearby with their families. Reflecting on her caregiving experience, Mrs D stated, “it didn’t seem like therewas anything that anybody could do for him,... Iwas doing all the house and yardwork and taking care of him. …This was very hard for me, physically.”

Mrs D’s daughter: We tried to help where we could, but she was reluctant to accept it….

Mr D would not accept nonfamily home health care.

Perspectives:

Mrs D: I could not stand another 24hours.…I asked my husband more than once, wouldn’t he like some of those people to come in and help him? At least bathe and things like that… He said no. 

Mrs D’s daughter: … [S]he thought she was responsible to… do just about all of the caretaking. …[T]hey did the parent thing of don’t worry the kids about how bad off maybe Dad is, or how she was feeling…

Dr K (inpatient geriatrician): [The suicide attempt] was originally precipitated by years of caregiver burden. … Mrs D stated that she was planning this for 2 years. Every day … when she thought about committing suicide… that made her feel better that she had an option.

Ms M (social worker): Sometimes [adult children] who still see their parents as being all-functioning and can do everything, may miss subtle cues or don’t listen between the lines. 

Dr N (inpatient psychiatrist): She didn’t look that depressed and she said she wasn’t feeling that depressed. … It struck me that the most useful thing would be … changing her situation and changing the drivers for that sense of feeling helpless and feeling trapped.

[ End vignette.

In this story of chronic spousal support, we see a sense of desperation to escape from the obligatory caregiving duties that have defined Mrs D's life for years.

Mrs D feels unquestionably responsible for her husband.
Mr D refuses to accept help from other sources.
Their nearby adult children are uninvolved, reportedly in a protective fashion.
The weight of the circumstances over time begin to affect Mrs D's ability to cope.
Burdened by responsibility-overwhelm and entrapment, suicidality becomes "the way out."

As we'll see in later lessons, this transition from care providing to depression to suicidality isn't an unusual or uncommon series of events.

Whether we're discussing spousal, parental, or other forms of chronic caregiving, the mental, emotional, physical, and material cost is substantial. Often those costs outweigh the resources available to the caregiver. ] 

Limitations of Psychological Care Providers

How about that juxtaposition between the last two provider perspectives discussing Mrs. D's stress and depression?

Social worker: "Some people may miss the cues or don't listen between the lines."

Next quote from a psychological professional: ".... she didn't look that depressed."

(and then she shot herself three times)

Ironic. This is another point for being aware-of and advocates-for our own mental and emotional load. We can't count on others to do it for us. 

Especially due to the animal instinct to hide our pain and present a strong face, not even mental health providers can detect or deter our stressload. All the more reason that being self-honest and informed about what you're experiencing in the midst of Filial Obligation is important in order to work towards the healthiest outcomes. 

[ Now let's learn about what Mrs D was probably experiencing that led to her attempt. ]

"Caregiver Burden"

Mrs D’s story illustrates the overlapping domains of physical, mental, and psychosocial health affecting caregivers of older patients. These domains are manifested by late-life depression,
geriatric suicide, social isolation, and caregiver burden.

Caregiver burden can be the most compelling problem affecting caregivers of chronically ill elderly patients. Overwhelming caregiver burden drove Mrs D to attempt suicide. 

There is no International Classification of Diseases, Ninth Revision (ICD-9) or ICD-10 code for caregiver burden. In a longitudinal study of husbands and wives as caregivers, Zarit and colleagues
proposed a useful definition: “The extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical, and spiritual functioning.”

This definition emphasizes the multidimensional toll caregiving may exact on care providers and also that caregiving is a highly individualized experience.

Some caregiving circumstances likely cause burden and stress for caregivers (eg, the need for heavy assistance with activities of daily living, social isolation, and financial deprivation as a result of illness and caregiving), but different thresholds exist for triggering caregiver burden. 

[ Let's pull out that definition.

Caregiver Burden: "The extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical, and spiritual functioning. This definition emphasizes the multidimensional toll caregiving may exact on care providers and also that caregiving is a highly individualized experience."

They note many practical considerations that contribute to Burden (heavy assistance, social isolation, financial deprivation, illness, time commitment). But the factors go much deeper than material, financial, and physical healthy considerations.

We'll find out why we all have a different (unconsciously driven) threshold for Caregiver Burden as our lessons progress. Get ready to deep dive into your buried knowledge. 

But first, here's another definition of that new vocab, broken into its component parts, as we inch closer to our answers.

This time, we hear from an additional source about the two aspects of Caregiver Burden: ]

Components of Caregiving Burden

Filial Piety, Caregiving Appraisal, and Caregiving Burden
Daniel W. L. Lai
Research on Aging 2010; 32; 200.

Caregiver burden is defined as the stress, tension, and anxiety that caregivers feel and experience when they are faced with problems and challenges when caring for their care receiver. Caregiving burden results from discomfort and strain when providing acts of caring for the care receiver. Burden is a word used to describe feeling emotionally or physically heavy.

Caregiver burden could be both observable and perceived. 

1. Observable burden is related to the costs and tasks of providing care to the recipient. 

2. Perceived burden is the extent to which the caregiver is troubled or disturbed and the feelings that they experience while providing care. 

The perception of burden affects the impact of that burden on the caregiver’s life.

[ It probably comes as surprise to no one...

There are temporal, material, and other measurable costs involved in Filial Obligation.
And there are mental, emotional, and spiritual costs that are impossible to quantify.

Together, the objective and perceptual demands define the Caregiving Burden experienced by care providers (which makes things rather complicated when everything is based on unique perspective). 

This means...

You're not "out of your mind" for feeling the weight of Caregiving, while others are seemingly unable to comprehend your degree of stress from their respective perspective.

Luckily, we can identify factors that contribute to both components of Burden in order to prepare ourselves for what's to come or better identify what's already happening. 

First, let's start with the observable. ]

Measurable and Perceptual Costs of Care

[ The expense of caregiving can be measured and quantified in some ways, while it's far more individualistic and nebulous in other aspects. 

Let's get into both categories of Burden.

To start with, here are a few numbers for individual households to mull over and prepare for. ]

Measurable Costs

As with Mrs D, the majority of caregivers are women who take care of a relative (86%) or friend (14%). 

Caregivers spend an average of 20.5 hours per week providing care, with 20% spending more than 40 hours per week. 

Caregiving includes assistance with basic and instrumental activities of daily living and medical support (eg, medication management, scheduling and accompanying care recipients to medical visits, and making treatment/management decisions). Equally important, the caregiver provides emotional support and comfort.

The economic value of this informal caregiving dramatically surpasses spending for formal home health care and nursing home care.

A recent cohort study estimated the cost of informal dementia caregiving at $56,290 annually per patient. (Adelman et al. 2014)

[Financial, energetic, time commitment, and physical factors that can be measured and validated absolutely contribute to Caregiving Burden. 

But then again, some aspects of the duties that cannot be verified. Our individual conditions and conditionings frame the experience of Filial Obligation, creating incongruent perceptions of our responsibilities.

Let's start with a common sense portion of the perceptual problem that increases Total Burden:
Most of us don't feel like we're equipped to become chronic caregivers. 

(We'll be coming back to this as a spring of anxiety and depression, but for now let's examine fear of incapacity as a source of stress that increases perception of Burden.)

Adelman tells us:]

Perceptual Costs: Medical Overwhelm

Most family caregivers are untrained and often feel ill prepared to take on caregiving tasks. This is especially true for caregivers who provide more medically skilled caregiving such as changing
catheter bags, providing wound care, or overseeing complex medication management. 

Caregivers who are the primary interface with the health care system often receive inadequate support from health professionals and frequently feel  abandoned and unrecognized by the health care system. (Adelman et al. 2014)

[ Keyword: feel.

The perception of Caregiving Burden is an individual and internal experience, unlikely to be objectively verifiable or agreed upon.

We don't need our families, friends, or work associates to notice or confirm the weight we've been carrying. Furthermore, they cannot. Not even on a medical basis.

When we're thrown into the deep end of a situation we're unprepared for (playing nurse as a part or full time job) the impact on our psychological landscape cannot be viewed from the outside.

But the perceived Burden goes beyond medical care. Going back to our paper by Lai, here are a few additional factors that complicate the Perception of Caregiving Burden, including individualistic experiences of stress and stress tolerance.

Lai says: ]

Perceptual Costs: Stress from All Ends

The caregiver stress-coping model encompasses much of the relationships between stressors and caregiving burden. It reflects on conditioning variables in caregiving such as health, income, social support, social relationships, nature of prior familial relationships, personality factors, and coping strategies. 

The model relates these caregiver factors to conditions that can add stress and burden to the family. These include functional status and affective state of the care receiver, namely, the nature of a dependent’s disability, prognosis, and visibility.

Stress is often a key factor resulting in caregiving burden.

In turn, stress has been associated with role conflict, which is related to caregivers having to simultaneously balance the roles of spouse, parent, breadwinner (i.e., employee or employer), and care provider for elderly relatives.

Role conflict is also seen when caregivers have less time for their children and family, possibly leading to potential psychological stress for the caregiver. These conflicts may have the consequences of decreased marital satisfaction, increased marital stress, physical feelings of exhaustion, and somatic responses such as disrupted sleep patterns.

Caring for an elderly family member also decreases the amount of self-care and relaxation time. 

Other stressors such as financial stress may occur in addition to role conflicts. Financial stresses may include purchasing equipment to assist with the mobility, medical bills, and home improvements for the health and safety of the elderly.

Stress is increased if the care receivers are unable to care for themselves and have problems with incontinence, dressing, mobility, and especially cognition. 

(Lai, 2010)

[ Lai tells us that there are many sources of stress one can expect to experience from Filial Duties, especially as those tasks conflict with our other duties and relationships. 

Our career can suffer, our social tethers can become strained, and we have less time to unravel the internal tensions that these situations are creating. We have less resources for self-care in all its forms. Caregiver health tends to decline as they focus on the ailing party. Finances become destabilized as the costs of care add up and employment becomes difficult to maintain. 

And these concerns increase with the level of disability and "invisibility" of the patient. (In other words, carereceivers who are poorly supported socially and medically are more likely to spawn stress responses in their caregivers.)

In general, the greater the degree of dependence required from the care receiver, the greater the actual and felt burden will be for the care giver. This happens in a holistic manner that is cumulatively defined by extenuating circumstances and incongruences between those circumstances - not only the absolute amount of care being directly provided.

So, to say that the individual experience of Filial Obligation is complexly influenced by innumerable known and unknown factors is a bit of an understatement.

Here are some more:] 

Other Risk Factors for Increased Caregiver Burden

Risk factors for caregiver burden include female sex, low educational attainment, residing with the care recipient, depression, social isolation, financial stress, higher number of hours spent caregiving, and lack of choice in being a caregiver (Table 1). 

Mrs D’s statement, “I could not stand another 24 hours of watching him the way he was,” highlights the detrimental effect of 24/7 exposure to the suffering of a loved one with chronic illness. 

Around-the-clock care obligations, particularly in situations that may be associated with high or increasing care needs (eg, dementia, cancer, decreased functional status, end-of-life care), and care transitions (eg, hospital to home) are all substantial risk factors for caregiver burden. (Adelman et al. 2014)

(Adelman el at. 2014)

[ Let's summarize the barebones of this table together. 

As you consider taking on Filial Obligation duties:

- don't be a woman with low educational status who lives with the care-receiver. They have the worst outcomes.

- under CG Burden individuals may face a 63% higher risk of death.

- while you lose weight (in a bad way), you're also likely to ignore your own health and suffer from interrupted sleep patterns.

- you face increased risk of depression, distress, social isolation, anxiety, and suicide. (more on this later)

- the outcome is closely connected to duration of chronic care, regular hourly commitment, financial stability, loss of other employment, and ability to decide to engage.

I think we can hypothesize about the psychological strain of feeling choiceless in the matter. As far as factors that will increase stress perception, feeling out of control and locked in a purgatory of someone else's making will boost those inflammation markers. 

Would you like a horror story of what happens when we don't have the choice? 

This has already been a long and damning lesson, so here's a short recommended blog post for you. Enter when you have the spoons. ] 

An Overview of Caregiver Burden from the Literature.
And a Horrific Example of What Goes Wrong.

[ Take your time with that bonus blogpost, check out these resources, and I'll catch you in the quiz! ]