Caregiver Fundamentals

Introduction

Caregiver emotions run the gamit of extremes but no matter what, they keep caring and doing what they do.

Caregivers Need Fundamentals to Build a  Solid Foundation

 
A House Built on Sand Cannot Stand Against the Storms 

    Have you seen sandcastles swept out to sea? Houses built on sand have no anchor in the ground to help them stand against waves. They crumble without that foundation.  Likewise, a person thrown into the caregiver role without fundamental caregiver training or knowledge cannot be successful in helping their family member thrive. Nor can they keep themselves healthy and injury-free. (caregiving.org/Caregivers in the US 2020)

   Likewise, caregivers need to build a sturdy foundation at the beginning that gives them the strength and confidence they need to survive life’s storms. Without that preparation, they may find themselves overwhelmed and unprepared when an emergency arises. Their imagined stability comes crashing around them, washing their confidence out to sea like sinking sand.

    Caregiver looking up information about how to apply for a disability status with social security

 
No Time to Prepare for Role

 Caregivers often acquire their roles without warning.  They have no time to mentally prepare or attempt to gain fundamental knowledge or skills.  While in a state of emotional shock, they must pull themselves together and make life-changing decisions. Sometimes the choices can be made with the person affected, but other times, they must be made alone. Therefore, immediately the need for knowledge of legal rights and access becomes essential.  

Healthcare Culture

Even before the need for legal rights is the need to understand medical terminology and how hospitals function. Entering the world of healthcare is like entering a foreign country.  Health care workers speak their language. The hierarchy of leadership and authority is acutely defined, and without an understanding of who’s who, you can become lost in how to get things done. Furthermore, the rules and regulations are detailed and restrictive. Unless you know what to do and not to do, it is easy to run afoul. Therefore, you must adjust to your loved one’s new health condition and the healthcare world you find yourself. 

Caregiving can be very stressful for family members and between the caregiver and care recipient.

 
Family Dynamics Change

     In addition to learning to be a caregiver, you also adapt to a change in your family role. Before becoming a caregiver, you were a parent, sibling, child, spouse, partner, significant other, etc. You were younger or older than the person you are now “nursing.”  Furthermore, you had a relationship with that person that was either on good terms or not so good.

Dealing with Conflict

There are, in fact, a significant number of abused family members who become caregivers to their abusers who resent taking on that responsibility for apparent reasons. Consider the situation of a loving parent with the mentally challenged adult “child” who becomes violent when he becomes upset and often injures the parent. Another role change that creates conflict is the adult child who must set limits for her mother, who has dementia and accuses her of treating her as a child. The list of examples numbers the same as the types of relationships that exist.  

Alzeheimer's aggression with angry outbursts
Who Cares for The Caregiver?

     Sometimes the person acting as the caregiver is also someone who needs help themselves. Both parties may have chronic illnesses or physical limitations. Who cares for whom when both are having a bad day? What happens if the primary caregiver gets sick? Do they use us all their savings? Is there an agency to help? What happens if hospitalization is necessary for the primary caregiver, and the dependent family member left at home has no one to provide care? Is there anyone left at home with the fundamental caregiver knowledge to assume the duties required?

Many children take on the role of caregiver when parents become sick even when they are very young themselves.

     Another case in point involves school-age children. If the parent of school-age children is the one needing care, the parent is also a caregiver. In such cases, the children often learn to help the parent with caregiving needs before and after school, while the parent supervisors the children’s activities. Parents fear losing their children in court and, therefore, keep their situation secret. The result is that they feel trapped at home and unable to reach out for help. While they know they need somewhere to turn for resources and answers, they don’t feel there is a safe way to get them.

Daily challenges of 24/7 responsibilities without relief or a solution seem overwhelming. The caregiver is pulled in so many directions life becomes out of focus and lived from one crisis to the next with just survival as a goal.
Home Alone

     Though caregivers come from different backgrounds with diverse histories, they all come unprepared for the journey that lies before them. With that being the case, all caregivers share a common bond of being afraid of failure, making a mistake, or causing harm. American culture asks an individual with no experience to take on the role of a nurse with no training, no reference books, and no one on-call for assistance. Instead, we expect these emotionally charged individuals to take medically fragile family members home with minimal instructions and make them better.

Depression, isolation, fear - all emotions that can overcome a caregiver who has no one with whom to share their concerns and frustrations.

  The abandoned caregiver complies with expectations and accepts responsibility for their family member’s care. Once home, the caregiver alone must figure out what they are supposed to do. What made sense at the hospital, now is confusing and half forgot. Materials needed are not available, and before the night is over, the frightened caregiver is locked in the bathroom in tears.

     Maybe that’s too dramatic. However, coming home can seem like moving into a new house—overwhelming and exhausting. Most of all, coming back is just plain scary.  The caregiver is on their own and afraid of making a mistake.

Caregivers are very critical of themselves. They expect perfection.  To be gentle with themselves is a good reminder.

How BFC can Help

     The first part of Becoming a Family Caregiver education focuses on adjusting to the role. Thinking back over personal experiences and conversations with other caregivers, I share ideas on what caregivers can expect as they settle into the role emotionally and ways to adapt their thinking. One of the more significant changes they must make involves how they look at their world. They must begin to think about life in terms of “right now” instead of “later.” Life for caregivers changes continuously, and making plans is a thing of the past for most caregivers who focus on the here and now and fundamentals of life.   “Living in the moment” is where the majority of us exist. For me, adapting meant accepting loss and learning to cope with a fear of the unknown.

Everything that happens in our lives prepares us for the next thing we encounter.  We learn from every event if we listen to the lesson.

    The second focus of BFC deals with providing foundational knowledge around skills and how the body normally functions. Unless a caregiver understands “normal,” it’s challenging to recognize abnormalities and correct a problem.

     For topics, I included what I wish I knew when I first started as a family caregiver and what others shared as difficulties when they began their journey. I plan to add more over time and welcome your requests if you need something that is currently missing.

 
Conclusion

    In conclusion, I hope you find the following information helpful and that it will help you acquire the foundation you need to keep standing during the storms ahead.