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Caregiver’s Context: The Big Picture

Sometimes the big picture helps makes sense of what we are experiencing. This is certainly true for caregivers of aging parents who feel overwhelmed and exhausted from the complexity and uncertainty of their work. The Caregiver’s Context Mind Map offers them an integrated overview of the unavoidable challenges that come with the role. It also illustrates that the responsibilities exceed the capacity of any one person.

Adult children can use the Caregiver’s Context Mind Map to answer the following questions about the most challenging aspects of their role:

1. Which of the contextual factors is currently the most challenging?
2. Why is this situation so challenging?
3. Why does it need to change?
2. What needs to happen to improve this situation?
3. What decisions and resources does the change require?
4. Who can help me find them?
5. Where do I start?
5. What’s possible in the next 30 days?

Framing a difficult aspect of the caregiving role in terms of why it’s so challenging and why it needs to change helps mobilize the brain’s creativity and resilience to find answers both from within and outside resources. It also helps adult children reset expectations as to what is possible given the scope and depth of the contextual challenges.

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Crossing the Eighty-Something Frontier

We all hope our aging parents will be robust and independent as they navigate their eighties. Some will, but the majority, nine out of ten, will not. They will become frail or suffer from dementia. They will wind up not being able to take care of themselves. We wish it were different, but the statistics on “older bodies” are blunt: rapid deceleration from eighty on is the norm.

How is this information useful?

1. It helps adult children and their aging parent understand the tactical choices they will face in the “eighties zone.” All eighty-something adults are going to need help at some point. What does that help look like? Can our aging parents give up some privacy to stay put? Are they willing to change living spaces if it gives them a better level of control over their lives?

2. It helps adult children and their aging parents understand the financial choices they will face in the “eighties zone.” All forms of additional help is going to cost money. Who will pay for it? Will it come from savings, home equity, or long-term care insurance? What is the best way to manage these costs?

3. It helps adult children and their aging parents understand the emotional choices they will face in the “eighties zone.” The loss of health is going to present some tough decisions. What situations do our aging parents want to avoid? What limits do they want place on medical intervention? When is it time to say goodbye?

These are not just questions we ask our aging parents; they are questions we need to ask ourselves. They not only give us a glimpse of our own future, but they help us feel the ‘weight” of what our parents are facing.

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Navigational Thinking and Being Older

Senior couple walking their beagle dog in autumn countryside

We see things not as they are, but as we are.

Navigational Thinking is an effective strategy for recalibrating perspective. It offers aging adults a process to create a more useful attitude about being older.

Navigational thinking mimics the strategy that pilots use during an in-flight emergency. Pilots resist the natural response to panic by focusing their attention on a set of predetermined questions that lead them to useful thinking about the best course of action to save not only their lives, but also the lives of the passengers who are counting on them.

Although Navigational Thinking acknowledges a decline in outlook is a normal response to upheaval of being older, it insists that a course correction is not only possible but is necessary to preserve quality of life.

Navigational Thinking is designed to capitalize on the unique opportunity that aging adults have to orchestrate a different outcome. To accomplish this, it offers a new thinking ritual they can use to change the internal discussion they are having about their experiences. It taps into the cognition-emotion connection in the brain and redirects the emotional intensity of being older into a more useful, positive perspective.

Navigational Thinking is comprised of three reframing questions that increase control and facilitate legacy. They can be used at any time and in any situation.

This is not a quick fix that will magically transform a negative attitude back into first half optimism. Rather, Navigational Thinking is a rebalancing tool for the distorted thinking that being older creates, a cognitive reframing system that slowly begins to restore a more sustainable and nurturing perspective.

Navigational Thinking questions can be asked in any order. All three questions begin to reverse the myopia of “problem fixation” that a negative attitude imposes on aging adults by redirecting their focus to new insights, choices, and solutions.

The questions have no right or wrong answers; they are not a test. They offer a starting point for a new internal conversation. Like all cognitive strategies, they are most effective when written down, reconsidered, annotated, and shared on a regular basis.

1. What is the big picture of being older?

The years forever fashion new dreams when old ones go. God help the one dream man…Robert Goddard

Aging brings with it losses and recovery. This is not a new experience for aging adults who are veterans of life’s give and take. Yes, being older has painful setbacks, but at the same time it mobilizes new channels of courage and resiliency in a world where time is no longer vague or intangible. It also fosters a deeper gratitude for family and friends who anchor love and support. Aging adults are free to savor both the past and an amplified present with just enough time to make a difference.

2. What are my choices in being older?

Ever tired. Ever failed. No matter. Try again. Fail again. Fail better…Samuel Becket

Aging takes its toll. It is easy to become defeated by losses and setbacks. Withdrawal and isolation are common is a society that venerates youth and sees aging as pathology. Despite these emotional and cultural headwinds, being older still offers the opportunity to dance with circumstances. Aging adults are free to set the agenda and see what happens. They are equally free to change their minds, be out of character or reclaim a dream. The same is true for disengagements and amends. It is also possible to do nothing and dance with the gift of each day. Aging changes many things but choice survives it all.

3. What can I learn from being older?

The wiser mind mourns less for what age takes away than what it leaves behind…William Wordsworth

Aging leaves in its wake lessons about being older. First and foremost, aging adults come to understand that life is hard for everyone. This transformative insight paves the way for an inclusive empathy through patience and kindness.

Second, aging adults have come far enough to see that life always works out of its own volition, an insight that marks the limits of their control over life’s drama. Aging adults are called to adopt a new perseverance that is less apologetic about being older and more accepting of the opportunity life presents without fanfare or limits each day.

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Caregiver Decision Fatigue

Caring for aging parents brings with it a new kind of exhaustion called decision fatigue. While its cause has a number of contributing factors, two in particular stand out as primary sources:

• Sustained engagement with dilemmas
• Decision volatility in family systems

Although demanding and stressful, the problems of aging can be contained or eliminated. Lost prescriptions can be refilled. Unsafe staircases can be modified. Transportation for an unscheduled medical testing can be arranged. Solving problems means eliminating uncertainty and most caregivers are well versed in how to do this.

In sharp contrast, the dilemmas of aging defy containment or elimination. They demand sustained engagements with uncertainty, a challenge most caregivers are ill equipped to handle. Consider the following example:

An 84-year-old woman is scheduled to seen by her doctor at her family’s request over her unwillingness to use a walker. She has an unsteady gait, a history of falls and significant bone loss. She lives alone with the assistance of home care services. Her family has tried a number of approaches to get her to use the walker, but she has rejected all of them because she feels it makes her look old and frail.

This situation typifies the nature of the dilemmas, which present as:

• Complex and messy
• Threatening
• Unsolvable
• No-win options
• Decisions must be made

As the family of the 84-year-old woman scrambles to head off a disastrous fall, their challenge goes beyond engaging a dilemma. They must also address how decisions regarding the walker will play out in the family system.

By definition, families are complex systems whose behavior impacts the receptivity and response to intra-family decisions. These behaviors include:

Non-linear reactions—Seemingly minor decisions can carry major consequences. The decision to have the family’s matriarch see the doctor was made by her two daughters without consulting their brother. The daughters were certain their brother would agree with their plan. He and his wife didn’t, and it provoked a heated argument between the sibling’s families about who has the authority to make these kinds of decisions as well as who has the authority to override their mother’s wishes.

Resistance to dictates—Solutions in family systems cannot be dictated. Rather, they must emerge through an idiosyncratic consensus ritual. The flair up over the doctor’s appointment is emblematic of how seemingly benign dictates can rain havoc in the system.

Structural instability—Even the most promising solutions fall apart without warning. Collective consensus in family systems is fragile with emotional crosscurrents and unsettled agendas poised to collapse even the most adventitious decisions. Push back from family members about the lack of communication and consensus regarding the need for the doctor’s appointment resulted in bitter recriminations and the appointment’s cancelation.

Given the stress and complexity of dilemma management within family systems, what are some strategies caregivers can adopt to reduce decision fatigue?

Reorient the big picture—Caring for aging parents involves sustained engagement with uncertainty on an unstable playing field. The rules and expectations of stable, problem dominated environments do not apply. This means success needs to be redefined to allow for messy outcomes and wobbly consensus.

More dancing, less wrestling—The metaphor for engaging dilemmas in family systems is dancing instead of wrestling. Attempts to impose solutions or outthink the structure are doomed and only accelerate and intensify decision fatigue. Honoring the nature of dilemmas by acknowledging that imperfect choices have to be made reduces the endless recrimination over outcomes that are beyond anyone’s control. Honoring the nature of family systems by acknowledging that all caregiving decisions are vulnerable to emotional crosscurrents reduces exhaustive attempts to craft perfect and lasting consensus.
Shrinking the horizon—In the non-linear world of dilemmas and family systems, recalibrating the horizon can reset expectations that may have become distorted and emotionally punitive. The reality is that caring for aging parents occurs one day at a time. Recasting the horizon to a daily dance based on “doing the best I can do with what I’ve got” honors our best intentions while restoring a sane estimation of our capacity and limits.

Reorient self-care—Sustained engagement with dilemmas in family systems is not possible without a recovery ritual. Without one, caregiver morbidity and mortality rapidly and tragically declines. While recovery rituals vary in style and content, they all share a common theme. Rest, nurturing relationships, and enjoyable activities. The noble call to do the right thing for aging parents should always include the preservation of the physical health and sanity of the caregiver.

Partner Up—Sustained engagement with dilemmas in family systems is always better with the non-judgmental support of those who have walked the same path. Caring for aging parents is a long game full of dark vignettes, dramatic reversals and thankless service. It is not designed for solo heroics or the faint of heart. Partnering up one on one or in a small group setting is a personal breakthrough for both caregivers and aging parents.

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Why Would An Aging Parent Say That?

A reoccurring theme in caregiver support groups is disparaging and derogatory comments made by aging parents to their adult children who are struggling to do the right thing. Voicing anger and bitterness about how their life has turned out, these personal attacks deeply wound the very person who is struggling to protect and care for them. “Why would they say that?” these caregivers ask over and over again. Indeed, why would they?

While each situation is unique, most of these painful scenarios share a common back-story of failed expectations from the aging parent’s perspective. As such, they are tales of people and events that are clearly responsible for their current misery. These stories always blame “others” and are never the responsibility of the aging parent. Sadly, the brunt of the retribution for this poor outcome falls on the caregiver who winds up the loser in a zero sum game.

Ironically, the aging parent’s perspective is only part of the game’s deception. Caregivers caught up in this toxic dance usually harbor their own set of expectations that perpetuate the dysfunctional engagement. Out of loyalty, duty and love, they truly believe that it is within their power, on some level, to find a way to make an aging parent happy. The stories of their quest to find the elusive answer are filled with false starts, extraordinary sacrifice and painful rejections. But in the end, nothing works because there never was an answer.

Most adult children caught up in this don’t want to believe the game is rigged. Instead, they want to be a change agent whose heroic efforts save the day. Unfortunately, none of us possess the ability to change anyone, least of all our parents. While we have deep empathy for their sad circumstances and would go to great lengths to reduce their suffering, their punitive expectations are never ours to repair.

This disturbing insight is difficult to accept. It rejects the myth that adult children have unique powers for changing who their aging parents have become. In this regard, it declares that the game is set in stone. What isn’t set in stone is how adult children choose to respond to it.

Faced with this realization, caregivers have the option, however difficult, of revising their expectations about what is possible. The work is no longer about finding the non-existent secret to their aging parent’s happiness combined with the mythical approval for a job well done. It is a more healthy set of marching orders that continues to honor the commitment to provide compassionate care but is based on more realistic and self-protective goals.

This proves to be a monumental revision in the parent-child relationship that is easier said than done. Their life-long emotional advantage of parents over their children asserts itself with surprising force at any attempt to alter the game. This usually presents as dramatic outbursts, high-powered manipulations, and an escalation of derogatory comments. Dogged persistence and resilience are required to withstand this predictable and unpleasant pushback. Even then, it’s always a messy and unsatisfying process.

But armed with new expectations, the shame of never finding the impossible slowly begins to recede. While the bitter comments still hurt, little by little they begin to ring false and are seen for what they are, desperate attempts by an aging parent to shift the responsibility for his or her role in their situation. While the game continues, the choice to reject its premise and declare a different interpretation and response has altered its impact, a shift in the balance of power that comes none too soon for caregivers.

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