Using Complexity as a Way to Empower Caregivers

Caregiving is frequently described as being difficult or overwhelming. Those are both apt descriptions of the experience, yet don’t help us very much at all.

I lean toward a different way of looking at caregiving –complexity.

Complexity highlights a crucial point, that caregiving isn’t really a single thing. It’s a layered role that involves many different factors, which all intersect with one another, creating their own patterns and distinct challenges. The factors at play, their strengths, and their intersections vary from one situation to the next, which is why solutions from one caregiver don’t necessarily work for another.

Looking at caregiving this way is surprisingly empowering. Doing so allows us to break the role down into components and address these individually – hopefully making things a little easier in the process.

Seeing caregiving this way also helps with caregiver guilt. This guilt is often driven by the idea that we should be doing better than we are. But, when you see all the layers that you’re dealing with, you’ll likely recognize that you’re actually a superhero.

One final note.

It’s best to approach this topic with curiosity and experimentation. Look for areas that might be relevant to you and play around with ways to make them a little better. The links scattered throughout the post can help you do this, as can our caregiving consulting service.

Experimenting like this takes away the pressure to get things ‘right’ and lets you see what actually helps right now. There’s no perfect solution anyway. The goal is simply to make things a little bit better wherever you can.

Common Caregiving Factors and Stressors

So then, let’s dive into some of the factors at play. While this isn’t a complete list, we do cover the most common and pressing elements of caregiving. Some will be obvious, but others may come as a surprise.

Related to the Care Recipient

Physical, Mental, and Emotional Needs

The person you’re supporting will have a host of different needs. They may be able to do some of these themselves, while they’ll likely need assistance with others. Care needs also increase with time, so even if they don’t need much support now, they might in the future.

• Physical care needs. Including assistance with the activities of daily living, along with more general support, like helping with housework, gardening, food shopping, and more.
• Medical support, including medication management, doctors’ appointments, working with conditions like diabetes, wound care, dealing with the healthcare system, and handling medical equipment.
• Emotional needs. Aging can hit on some big emotions, as seniors adjust to this new phase of life, what it means for them, and how it affects relationships. Seniors may respond to these feelings differently, and the impacts won’t always be obvious.
• Mental health needs. Seniors are vulnerable to issues like depression and anxiety, especially if they are socially isolated. Many may have been raised in environments where such topics are not discussed, so may not be vocal about their experiences.
• Social needs. Seniors are at high risk for social isolation, as they no longer work regularly, people in their age bracket are more likely to die, and they’re less mobile. This isolation can contribute to a variety of issues, including an increased risk of depression.
• Safety needs. People often become more vulnerable with age, so adjustments may be needed to keep them safe. This can include changes to the home, like installing rails or moving to a smaller and safer space.

Behavioral and Personality Challenges

Conversations about caregiving often assume that the care recipient is generally grateful and works with the caregiver as much as possible. Unfortunately, this isn’t always the case.

Some seniors are in denial about aging or don’t prioritize their safety, which can lead to them refusing help and putting themselves at risk. This puts adult children in a difficult situation, as the senior still has the right to make these types of decisions.

Other seniors follow a different pattern and look for excessive support, even if their actual needs aren’t that dramatic. Some caregivers burn themselves out trying to keep up with the demands, only to feel like they’re never doing enough (unhealthy parent-child dynamics can add to this issue).

That’s not even the worst of it. The senior could have a condition like narcissistic personality disorder, bipolar disorder, or borderline personality disorder, or simply be abusive without any diagnosis. Such issues turn caregiving into a nightmare for the adult children who continue to provide support (some people do, while many others refuse).

There are plenty of other variations as well, like seniors with depression or those who simply won’t engage in life. Regardless of the precise issue, any personality or behavioral difficulties can dramatically change the caregiving experience.

Changes in Cognition

Then there are conditions like dementia, which lead to progressive memory loss and cognitive decline. Changes in the senior’s brain require caregivers to regularly adjust their strategies and re-learn how to communicate with the senior.

Cognitive changes and limitations are a massive area of complexity because they can impact every other aspect of caregiving. Even once simple tasks like using the bathroom can become a big drama and something the senior can’t do on their own.

Their Living Environment

The senior’s physical environment has a range of implications for their physical and mental health. The following areas are especially relevant:

• Safety. People are increasingly prone to falls and injuries as they age, so a once safe home may now lead to accidents. Alterations may need to be made, like adding grab bars, to ensure the senior remains safe. Other times, the senior might need to move to a new living situation, like a smaller single-story home or assisted living.
• Who they live with. Seniors may be lonely if living alone, while living with people creates the potential for conflict. Living with family is particularly variable. On one hand, the familiarity and emotional connections can be beneficial, making the senior feel safe and loved. However, the same situation can also be tough due to family history, unhealthy relationship patterns, or vastly different expectations.
• The amount of independence. Some seniors resent any decreases in their independence, which becomes especially notable if they need to rely on others for support or if they need to move to a facility.

Other elements can also be relevant, like how much the place feels like home and whether it is associated with painful memories.

The impact of their living environment is why many seniors are so resistant to moving into an assisted living facility or similar environment.

 Related to the Caregiver

Now we come to the factors that relate to the caregiver, including your own needs and how caregiving impacts you.

Physical, Mental, and Emotional Demands

The physical demands of caregiving are easily recognized. This includes hands-on care tasks, like helping the senior to bathe or helping them move from their bed to a chair, along with running errands, practical tasks around the home, and more. The time and energy can add up quickly, especially as you also have your own life to manage.

Planning, organizing, and adapting take a surprising amount of mental energy. The effect gets much stronger if you’re trying to organize multiple people, like yourself, an aging parent, your children, and work meetings.

Caregiving can have particularly high mental requirements because it is unfamiliar and often unpredictable. You often need to learn as you go, then adapt whenever things change.

There’s an emotional component too. This includes the emotions that arise from watching a loved one’s decline, plus the emotional challenges of day-to-day engagement with the senior. There’s often a grief component too, as you’re mourning the loss of who the senior was or your previous relationship.

Emotional challenges are often amplified in caregiving, particularly if you and the care recipient have a difficult relationship or if you’re already exhausted.

Financial Strain  

Caregiving can come with considerable financial strain. This is partly due to the cost of extra products and services to support aging, especially if the family needs to hire professional caregivers or if the senior needs to enter assisted living.

At the same time, caregivers may need to decrease their work hours or even quit their job entirely. Doing so makes financial pressure even worse.

Difficulties Meeting Your Own Needs

Like seniors, caregivers have a selection of mental, physical, and emotional needs to meet, including getting enough sleep and connecting socially with others. Neglecting these often leads to increased stress and may contribute to health problems in the future.

Yet, caregivers famously struggle in this area.

That’s not surprising, as caregiving on its own takes a huge amount of time and energy. It’s tough to meet your own needs as well, especially if you struggle with guilt and feel that you should be doing more.

And honestly – the workload of caregiving isn’t realistic. It’s often too much for one person or even a whole family.

Some needs are also difficult to meet, even when the caregiver can focus on them. For example, caregivers may find that the little time they have for social connection doesn’t work well with friends’ schedules. Previous friendships may also feel less supportive than they once did, as friends may not know how to relate to the caregiving experience. Some friendships fade as a consequence, requiring caregivers to find new connections.

Caregivers can also struggle in some areas of their own health, like dealing with fibromyalgia, back pain, depression, diabetes, etc. Such health issues add another layer to the caregiving experiences and make self-care even more crucial. 

Limited Time

Caregivers are trying to manage the needs of their loved ones and themselves, while also dealing with the regular aspects of life, plus a complex healthcare system, interpersonal dynamics, paperwork, and more.

Often, there are too many things that need to be done and simply not enough time.

Self-care is one of the biggest victims of limited time, but other things can get missed as well. For example, people caring for a person with dementia might not have the time to learn about the condition and what to expect as it progresses. Because of this, the caregiver may need to constantly adapt to changes, an approach that could even put the senior at risk.

Lack of Training, Experience, and Support

Most family caregivers receive little to no training for their role. They’re often forced to learn as they go, using whatever information and connections they can find.

This can be incredibly stressful and can also lead to serious problems. One issue is that caregivers may be unaware of some potential changes to their loved one’s situation or health, such as how symptoms change as dementia progresses or potential hazards in the home.

It isn’t just the health side of things to think about either. Many people also lack knowledge about how to balance their needs with the care recipient’s and how to make the best decisions, especially when there are many changes and little predictability.

Support is another area. Some support options exist, including respite care for caregivers, but systems can be tough for caregivers to navigate alone and may require more time than the caregiver has.

Personal and Social Expectations

Not only do caregivers face these various challenges, they’re also subject to unrealistic expectations from others. This can include people thinking the caregiver should be doing more or that the role really isn’t that difficult. Such unrealistic perspectives are one reason why family members may not provide much support.

Caregivers may have unrealistic expectations of themselves as well, which can result in inadequate self-care and a tendency to push themselves too hard.

Other Factors

The Parent-Child Relationship

Adult children caring for aging parents face some extra elements that must be considered.

First, caregiving represents a significant relationship change. The adult child is now the one providing support, instead of being supported. This creates an entirely different parent-child dynamic that some people have trouble adjusting to. There are many variations of this, like the following:

• Parents who value autonomy and independence may refuse to accept advice from anyone else, particularly their children.
• Some parents may hold onto the old relationship dynamic, assuming that they always know best than their children. This is particularly likely if the senior has a low opinion of the adult child’s life path.
• Adult children can also hold onto historic relationship dynamics. This is sometimes seen caregivers who do everything they can to please their parents, even when the requests are entirely unreasonable.
• Some caregivers see this stage as a role reversal and treat their parents much like children. Doing so is completely inappropriate, as aging parents have a lifetime of experience and the right to make their own decisions.

Unresolved historical issues often come to the surface as part of the caregiving dynamic, potentially leading to emotional reactivity, disagreements, conflict, distrust, or other problems.

For example, children of emotionally neglectful or abusive parents can find caregiving extremely difficult and may see echoes of past experiences in the current situation. Such parents may continue their damaging behaviors even as their family members are providing care. 

Family and Other Interpersonal Dynamics

Of course, relationship challenges aren’t limited to the parent-child dynamic. There are plenty of other relationships at play too, all of which come with their own positive and less positive elements.

In particular, family history, dynamics, and differences between people can have a dramatic impact when aging parents have significant health needs. Common issues include different expectations, unequal roles and responsibilities, and disagreements about the best care decisions.

Some of these are driven by the fact that people can end up with very different perspectives from one another. For example, some adult children feel that their aging parent is best cared for in a facility, perhaps because of the skilled staff members present. Others may think that family care at home is the only viable option.

Such differences in perspective can be tricky to navigate, especially if multiple people feel that theirs is the correct approach. The presence of historic family tension makes things even more difficult to resolve, requiring time and patience from everyone involved.

Big Decisions

Seniors and their caregivers need to make some highly significant decisions, including decisions about end-of-life wishes, treatment plans, when the senior stops driving, and whether the senior should stay at home or transition to assisted living.

These decisions often have no clear answers. They’re also loaded with emotional meaning and may be strongly influenced by personal values and priorities.

It can be tough to navigate these decisions, especially if those involved have different views about the right approach to take.

Dealing with Systems and Professionals

Caregivers aren’t working in isolation. They’re part of a larger system that supports the senior, including the healthcare system and any sources of financial support.

There’s a lot of paperwork and bureaucracy in such systems. It can feel like you’re jumping through hoops to get even the simplest thing resolved. The nature of the system can even mean that some care needs simply don’t get met in time.

Final Thoughts

The length of this list proves why caregiving can feel like such an overwhelming role. However, it also provides hope, as the various elements can be addressed individually.

For example, elsewhere on Kapok we’ve talked about specific strategies for having difficult conversations. Such approaches can help with many interpersonal conflicts and perhaps even get everyone working together on the same goal.

When thinking about what to do, consider which areas are currently causing the most challenges. Is it the lack of time, a parent’s difficult behavior, the healthcare system, or something else?

Once you’ve identified the most challenging areas, you can start to think about possible improvements. Many of the posts here at Kapok can help you along the way. You can also check out our caregiving consulting service for advice that’s specific to your situation.