This week’s episode of The Caring Generation discusses how caregivers can lose sight of what is important. As a caregiver, it is important to maintain a consistent focus on what makes you feel happy and fulfilled. Caregivers who willingly self-sacrifice parts of their lives to focus on caregiving tasks can risk the loss of important relationships.
Additionally, interactions with the healthcare system can be in conflict with the goals of the caregiver and the person who needs care. Learn how to gain sight of issues that are not always obvious to make sure your efforts balance the needs of the caregiver and the loved one who needs care.
How Caregivers Lose Sight of What Is Important and What to Do About It
A single-minded focus can harm or destroy other parts of life if you are a caregiver swept up in duty and responsibility.
This
conflict between responsibilities and relationships can happen when:
- Caregivers feel they have no choice in becoming a caregiver.
- Care relationships shift the focus from friendships, marriage, parenting, and other roles.
- Involvement with healthcare systems—that rarely consider caregiver involvement—can add stress and unexpected complications.
No Choice to Become a Caregiver
Let’s talk about the obvious, whether you are new to caregiving or have been doing this for a while. The obvious may not yet be apparent depending on where you are on the “I had no choice but to become the caregiver” versus “I am doing this willingly and feel very fulfilled by caring for another person.”
Depending on which side you are on—no choices versus willing and how long you have been a caregiver—it may be impossible to imagine a person would feel different. To put this into perspective, remember this contrast of opinions and beliefs when thoughts of judging your siblings or other people who do not help come to mind.
Not everyone attaches the same level of duty and responsibility to the role of caregiving. When you compare yourself or your situation to others, the result can be varying levels of resentment and dissatisfaction.
This difference in the level of what is important transfers to caregivers’ relationships with other people. We will begin by looking at friend relationships and then discuss spousal relationships.
Lifelong Friendships Transform or End
Let’s say you have a lifelong friend or 20, 30, 40 years or more. Suddenly one of you becomes a caregiver for an aging parent.
What you may not realize if you are not the caregiver is that accepting the role of a caregiver means that your friend is trying to be everything to everyone.
Everything may include being a friend to you, a husband or wife, a son or daughter, a father or mother to children, an employee in the workplace, or a volunteer.
There are many roles in life. Role-shift to becoming a caregiver can involve small amounts of time at first, then growing to 20, 30, 40, or more hours a week. So in these situations, eventually, something or someone has to give or be more flexible to maintain relationships.
Caring for an aging parent, a spouse, a sibling, or someone is time-consuming and involves the ability to respond immediately to urgent situations.
Urgent Situations Can Require Immediate Attention
To offer a personal example, I was the guardian of a man living at home with dementia who had caregivers coming into the home. The man did not understand why he couldn’t live independently or perform everyday activities like grocery shopping.
So, imagine this. It is Friday night. I am at a movie theatre watching a movie with my husband, whom I met after work. Fortunately, we came from two different locations, and both had our vehicles.
I received a text message from my client’s attorney during the movie. The attorney stated that my client was rebelling because he felt controlled by the caregiver assigned to care for him that evening. My client, let’s call him George, was at a nearby grocery store and refused to return to his home with the caregiver.
I left my husband in the theatre watching the movie to go to the lobby to return the text and make a phone call. I attempted to determine if there were any directions or suggestions I could give to the caregiver with George at the store. The caregiver had tried everything she knew to calm him down and was unsuccessful.
She relayed that George wanted her to leave him at the grocery store. Leaving him would be unsafe, considering his memory loss and mental state. He was acting irrationally and saying that he would harm himself if he had to go home with the caregiver.
Fortunately, the staff at the grocery store knew George and did not believe the caregiver was acting inappropriately. After speaking with the caregiver and the staff at the grocery store on the phone, I called the attorney.
The attorney confirmed that he would go to the grocery store to talk with the client. But a backup plan might be necessary if the client would not return home with the attorney. The need for a backup plan meant that because I was legally responsible for George, I had to meet the attorney, George, and the caregiver at the grocery store.
So I left my husband at the movie theatre at 8 pm on Friday and drive halfway across town to solve this situation. I could not refuse because if any harm came to my client, I and my company would be legally responsible. So off I went.
This is an example of how caregivers lose sight of who or what is important when they are pulled in different directions. Even though, at the time, there may be no other choice.
Paying Attention to the Person With the Greatest Need at the Moment
There are instances when there is no option but to choose the person with the greatest need at the moment.
This situation is one of many examples of unexpected situations for family caregivers who are legally or primarily responsible for the care of a loved one.
So, put yourself in the place of your friend, the caregiver, who faces varying degrees of this experience daily. How might you feel as a caregiver with an out-of-control life?
- Fear or panic about losing sight of what is important—relationships, health, or a job.
- Mentally or emotionally exhausted or burned out.
- Overwhelmed and uncertain of how to change the situation.
So it’s essential when accepting
a role that might become all-consuming to talk about how not to lose sight of what is important. These include friendships, personal interests, marriages, and a career.
In other parts of life, outside of caring for aging parents, this role can also be choosing to have children or accepting a job that involves travel, weekend work, or other non-standard requirements. It’s best to be realistic about the benefits and challenges of choices you make.
Friendship With An Over-Scheduled Life
Here is an example of how caregivers lose sight of what’s important when life is scheduled down to the minute. You are the friend who calls and wants to chat. All the caregiver can think is, “I don’t have time. I’m juggling too many other things.”
The phone call distraction might be very positive for the caregiver, but the caregiver says, “I can’t talk now,” or “I’ll call you back,” but becomes distracted and never returns the call.
You become resentful because your friend, the caregiver, broke their word. So you decide not to call again. Weeks and months pass. You miss your friend, but your pride stops you from picking up the phone.
Let’s look at another example of losing sight of what’s important.
- A friend and caregiver see each other occasionally.
- During visits, the caregiver complains the entire visit.
- The caregiver also wants to be the person who decides on the time with friend activity.
In this case, the non-caregiver friend can feel pessimistic about the friendship. Time spent together focuses on the negative. The friend feels powerless to help because past recommendations—even though the caregiver asked for help—have been brushed aside.
So this relationship, rather than being mutually beneficial, becomes one-sided. Let’s look at both sides. First the caregiver and then the non-caregiver friend.
- The caregiver may feel that he or she has lost total control of their life.
- Daily, weekly and monthly events are led by the needs of the elderly parent or spouse who needs care.
- The caregiver has given up everything, a job, other friends, and hobbies, to be constantly available to provide care.
- So when the time comes to escape for a few hours, the caregiver wants to do what the caregiver wants to do.
- There may be an expectation that the non-caregiver friend will go along.
The non-caregiver friend may have different a different outlook.
- Feeling ignored, unimportant, or unappreciated.
- A sense of loss that the friendship may be lost.
- Guilt or anger toward an aging parent or spouse who needs care even though the responsibility of the caregiver is acknowledged.
Caregiving: Babies, Children, and Elderly Parents
When you think of this role shift to care for an aging loved one, the shift can be compared to having a friend with a baby when you do not have a baby or any children. Babies are a 24/7 job. Children require time and attention.
Your friend’s time with the baby or an elderly parent becomes consumed by caregiving. The ability to do something at the last minute is gone—the ability to do activities without the baby or an elderly parent may not be possible.
So the friendship, instead of being one-to-one, is now you, your friend, the baby, an older adult. The activities are limited to things that can accommodate persons who need care.
If friendship is important to you, you may have to decide if you will always include an elderly parent or a baby in activities or outings. Or is it possible to work around a babysitting or a care-sitting schedule?
The other complication is a change in interests that includes sharing information about caregiving experiences. You may feel you are on your way to having little in common because this relationship or responsibility that you may not share might last for years.
Yet there was something there at one point: a reason you became friends. What was it? Can that basis of common interests sustain the friendship?
Looking at this from a different perspective, the non-caregiving friend has an opportunity to seek out new relationships and make friends based on common interests. Because life roles shift, having friends in different roles and in different places in their life can be a positive experience.
Relationships: Do the Work
There are practical discussions and decisions to help caregivers who lose sight of maintaining important relationships. If both individuals are willing to do the work to continue the friendship, then the friendship can continue on a new path of ongoing interaction and communication.
If you are willing to make this effort, time with your friend may involve baby time or time helping them care for an aging parent. If not, you both might decide that circumstances are beyond anyone’s control and that this will be the way for some time. Other options might be:
- Scheduling stay-in-touch phone calls until the caregiving friend is more available.
- The non-caregiver friend can assist with tasks to free up time so the caregiver and friend can have time together.
- Teamwork with both individuals engaging in activities to care for the person in need.
While none of these suggestions may be ideal, they can support an ongoing relationship by realizing the existing constraints.
Making adjustments to maintain a relationship can be difficult if you are the friend on the outside, watching caregiving duties consume a friend’s life. If you have not been a caregiver or had a child, it may not be possible to understand the work and time pressures that result from care activities.
So, like the caregiver experiencing the losses in their life, loss of friends, enjoyable activities, and giving up a job, the friends and people who know the caregiver can experience similar losses.
These transitions are part of life. Caregivers who are so busy may not be able to see that other options exist. Questions and conversation starters might be:
- Who can help the caregiver, even if this is hired or volunteer assistance?
- Does the caregiver have to give up all aspects of their life, which means excluding relationships, activities, and other parts?
- Have all options for the care of a loved one been investigated, even though they may not be ideal?
- What would the situation look like if the caregiver was not involved and others provided care?
These are good questions that caregivers buried in responsibility may not think to ask.
Learning to set boundaries can be difficult for caregivers who want to remain helpful or feel a sense of duty.
Duty and Responsibility
When caregivers are pulled into the vortex of care – a whirlwind of non-stop effort, it can be difficult to pause and consider the short and long-term effects on life. For example:
- The caregiver cannot see what has happened to relationships because they are so focused on care details.
- It becomes impossible to see that one thing is more important than another or that some things can wait.
- Caregivers feel like they are the only ones who can provide care. So, they refuse to consider the involvement of another person.
- The unexpected needs of an aging parent or a spouse are impossible to predict. So, making plans is impossible.
- There is no end to the tasks. Other needs are continuously growing in the amount of time required and the scope of activities.
The caregiver who always says yes, instead of no, is asked to do, give, and trade more of their life and eventually believes there are no other options.
If the caregiver is not thoughtful, the result is that it will be difficult, if not impossible, to return to the life that existed before caregiving. Marriages may be destroyed—relationships with children harmed. Friendships lost. Career prospects derailed.
The World Moves Ahead While Caregivers Can Remain Stuck
These and many other examples are reasons why it is important for caregivers not to lose sight of the importance of relationships, careers, living independently, and finding ways to enjoy life.
Are you a caregiver in this situation? If so, seek support and help. Don’t wait.
Repairing damaged family relationships because you were angry at siblings who chose not to help might not be possible. Regaining or learning new skills that fit today’s job market may mean returning to school or taking an entry-level position. The longer you are away from the world, the more difficult it is to re-enter.
For example, I spoke to a caregiver who took ten years out of the job market and was shocked that job-seeking today happens online. A bot or computer program scans resumes to confirm basic skills. If and only then is a resume passed to a human who may or may not call you for an interview. Your Internet presence and what you post on the Internet might disqualify you from consideration for a particular job.
Marital Relationships
Similar experiences with losing touch about what is important happen in marriages, partnerships, and the workplace. One spouse or partner can become dedicated to caring for an aging parent, excluding spending time with a spouse or partner.
These losses are much more challenging to navigate with a life partner. Getting a spouse’s or partner’s attention can be similar to the actions for an intervention with a person addicted to alcohol or substances.
You may have to be the one to fight for your marriage. The caregiving spouse may not be able to see a path forward. Guilt, seeking appreciation, and many other emotions combine in care relationships that consume life. Detaching from a complex care relationship is not easy and may take planning and a timeline.
Caregiving and Healthcare Systems
Now let’s talk about caregivers and healthcare systems. If you are a caregiver, you probably have experienced that healthcare providers—from hospitals and hospital staff to persons at a doctor’s office, working in home health, the staff at labs or treatment centers, pharmacists, customer service people at insurance companies, and so on— can be your best friend or worst enemy.
The U.S. healthcare system is one of the world’s most expensive systems with inconsistent outcomes. One of many reasons for this is fragmentation or silos of programs and funding that begin at the national level and trickles down to states.
This funding and these programs include how the healthcare system approaches patient care. In 2007, an organization called the
Institute for Healthcare Improvement developed a framework called the Triple Aim.
- In 2014 the Triple Aim Became the Quadruple Aim.
- The Triple Aim initially focused on Improving the patient experience and population health and reducing healthcare costs.
- The addition of the fourth Aim called attention to healthcare worker burnout.
Family caregivers suffer from equal, if not more significant, levels of burnout than healthcare workers—but for different reasons. There is no mention of family caregivers in the Quadruple Aim.
This lack of recognition of the work and self-sacrifice by family caregivers—who are highly involved in patients of healthcare systems—represents a major gap in balancing what is important and to whom.
How much progress have healthcare systems made in the last 16 years (since 2007) toward improving the patient experience? I will leave that up to you to think about based on your experience. My experience is that because healthcare systems (not patients) define the patient experience, progress has been slow.
Healthcare is Complicated
Healthcare systems include payers—known to patients as insurance companies and government programs like Medicare and Medicaid. Plus, there are providers—known to patients as hospital systems, physician groups, pharmacies, labs, skilled nursing communities, home health, hospice, etc.
When discussing the level of burnout of healthcare workers, individuals who are patients and caregivers may not recognize the amount of complexity, red tape, and bureaucracy involved in providing care services.
For example, the healthcare system is losing physicians because of higher demands for administrative work and paperwork required by the Department of Health and Human Services, state governments, and other agencies and branches. All of these organizations may have different goals.
You may also be aware that efforts to fund and speed progress in healthcare systems may be hindered by government agencies, non-profit organizations, and public and private organizations who may duplicate efforts.
On the community side of healthcare, many organizations are doing good work for patients and caregivers. But similar to patients and caregivers, these community-based organizations may not speak the language of healthcare systems. Community-based organizations may also have different goals.
So how do we move everyone to work in the same direction for the benefit of the patient? Many efforts are underway, but the rate of progress is slow.
CMS (Centers for Medicare and Medicaid) Proposed Rule for Caregiving Support
One example is an August 2023 CMS (Centers for Medicare and Medicaid) request for comment specific to caregivers receiving training from clinical providers specific to activities of daily living for patients receiving rehab.
You can find the document in an Internet search for Federal Register Number 2023-14624. It is a proposed rule called Medicare and Medicaid Programs:
CY 2024 Payment Policies Under the Physician Fee Schedule and Other Changes to Pat B Payment etc.
If you look at this document, you will see why healthcare systems and providers might feel buried in administrative tasks or paperwork. The document is 936 pages long. It is one of many documents published by CMS each year. Open it and scan for Item #26.
Item twenty-six offers specific information about caregiver training. CMS proposes teaching caregivers skills to help aging parents and others they care for with
activities of daily living (ADLS) and instrumental activities of daily living (IADLs).
Caregiver training makes a lot of sense. But when you think about it, the CMS proposal shifts responsibility to family caregivers. This shift allows healthcare providers to meet the Quadruple Aim goal of improving patient experience and population health and reducing healthcare costs and worker burnout.
Healthcare Worker and Caregiver Burnout
How does caregiver training support the Quadruple Aim and
caregiver burnout?
- Improving the patient experience and reducing healthcare costs happens by reducing re-hospitalizations. Instead of a patient returning to the hospital within 30 days of returning home, the effort to train caregivers means that aging parents and others can recover at home with family support.
- Teaching and training improve the patient experience by raising caregiver confidence and self-esteem. Transferring knowledge from home healthcare workers to family members improves patient self-care and caregiver advocacy skills.
- Reducing population health concerns happens by identifying and treating health concerns like high blood pressure, strokes, and falls. When caregivers provide support for daily living activities, their loved ones benefit.
- Healthcare workers experience less burnout when patients are more involved in their care. Attending routine doctor appointments can improve relationships between patients and their care providers.
So when we look at how caregivers lose sight of what’s important, the basis can be over-involvement by caregivers.
Caregivers may be so focused that they miss the realization that doing too much for another person—in the ways of thinking and doing—results in that person doing less for themselves.
So while caregivers complain about their workload, they keep doing more, resulting in the person they care for doing less. How does this happen? Part of the answer is impatience.
Caregivers can do things better and faster than a parent, who may be very slow in performing all activities. Just because caregivers can work faster doesn’t mean they should. Allow persons needing care as much independence as possible so that caregivers can retain as much independence as possible.
Change Comes from Within
When becoming a caregiver, losing sight of what’s important—marriage, children, friendships, interests, or a career evolves over time. Nothing will change or improve until caregivers value their efforts and lives. If you are a caregiver, consider the following:
- Trying to change other people can be frustrating—instead, change yourself, how you think, and how you respond.
- Avoid comparing your life or relationship to others—you will only become resentful. Instead, express gratitude and be thankful for small and large blessings.
- Gain the support of people with similar experiences and then get outside of the caregiving world to embrace different opinions and experiences.
- Meet new people, and experience new things
You might be surprised to learn how fascinating life can be when you take the time to broaden your experiences outside the world of caregiving or any other responsibilities or areas that result in losing sight of the important things.
As a caregiver, seek the support of friends and family who love you to help you with the transition from a single focus of caring for another person to focusing on you and your relationships. Begin today.
Looking For Help Caring for Elderly Parents? Find the Information, Including Step-by-Step Processes, in Pamela’s Online Program.
©2023 Pamela D. Wilson All Rights Reserved