How Caregivers Acquire Their Role

              How Caregivers Acquire Their Role Affects Their Acceptance 

Caregivers acquire their role in a variety of ways. For some, it happens quickly, and for others, the process occurs gradually over time. Each event brings certain traits that impact how a caregiver processes the new duties they acquire. With a tragic accident or illness, the caregiver experiences emotional trauma and adjusts to becoming a caregiver. When an illness progresses slowly over time to the point that a family member loses independence gradually, a caregiver has time to adapt to the thought of taking on more responsibility. However, the transition is never an easy one.  Each type of transition brings with it special considerations.

Below, I provide an example of a typical situation where someone takes over the role of caregiver. Notice the changes that make the transition necessary and the key factors for consideration.

Situation 1 Long-Distance Family Becomes Ill:

Background:

The caregiver lives several hours away from her mother.  Most of their interactions are virtual through a device such as a phone, tablet, or computer using Zoom or Facetime.  Personal visits occur mainly on holidays.

Chain of Events:

• During the weekly calls, the caregiver notices a mistake in what her mother says but assumes that it is typical “old age” and thinks nothing of it. Her mother occasionally forgets someone’s name or a place they had visited but nothing significant. No alarm bells go off after their telephone calls.

• Since the caregiver uses Facetime to talk to her mother, she notices some changes in her mom’s appearance.  Mom no longer gets dressed each day and often stays in her PJs.  Her posture is stooped, voice flat, facial expressions dull, and overall general appearance unkempt. In addition, other background clues (dirty clothes, trash accumulation) indicate her mother is not taking care of her homes, such as dirty dishes, clothes, and trash scattered throughout the background visible on the phone.
• The daughter attempts to get mom to accept help, but mom refuses. The daughter has even hired people to clean for mom or act as companions, but mom has refused to let them enter the house.
• Neighbors and acquaintances start calling the daughter to report they are concerned for her mom’s safety. For example, one neighbor reported that she found her mom wandering around in her garden one afternoon, pulling up plants and talking about getting ready for the spring planting (it was Fall).
• The daughter receives a call one day that the mother is going to the hospital with a possible stroke.
• Upon arriving at her mother’s home to leave her travel bags, she finds the house smells of old food, dirty clothes, and dishes are everywhere. Papers and trash are piled high, and a stack of ” overdue ” mail lays in the mailbox.

Key Points: Challenges with Long Distance Care

• The caregiver is unable to see the living space first-hand. As a result, the family member may lie about living conditions.
• Unfamiliar with local resources, including who to contact for assistance or who might check in on a family member.
• The employer may threaten employment if the caregiver requests time off to check on a family member (FMLA prohibits such action).
• Family obligations (getting children to school, personal commitments, personal medical commitments, etc.) might conflict with the ability to leave one location to go a great distance to another.
• Long trips may not be affordable financially or in time commitments.
• Feelings of guilt, frustration, fear, and anxiety compete for emotional priority. The caregiver feels that nothing they do is right because it’s impossible to please everyone.  
• Insufficient income to cover expenses for 24-hour care or monitoring. In-home care is usually not covered by insurance and rarely is affordable for most families.
• When hiring an in-home caregiver, a method to monitor care and efficiency is needed. In addition, the caregiver may take on additional responsibilities for payroll, coordinating work schedules, and hiring activities. 

Situation 2 Emergency Event or Sudden Health Crisis: Background:

In emergencies, the event occurs suddenly and without warning. All involved parties are in emotional shock. Fear and anxiety lead to difficulty in decision-making and cloudy thought processes.  During the hospital stay, the caregiver is anxious and afraid. She gets only short periods of sleep, eats poorly, rarely leaves the hospital, and when she does, it’s to take care of business or chores. The caregiver’s laser focus is on the one who is sick or injured. Whatever the healthcare professional request, the caregiver promises will happen at home – whatever it takes to return them to the way things were.

For serious injuries involving long-term care, recovery moves forward slowly. A conflict between responsibilities inside the hospital and outside develops, creating frustration and resentment. Fear of what lies ahead surfaces as talk of long-term rehabilitation begins, and the impact on job responsibilities becomes a reality. The caregiver’s life takes a backseat to the injured one, and that two lives changed on the day of the accident; however, only one is in recovery.

Chain of Events:

• After the next of kin receives the notification of a serious event, emotional shock develops, narrowing of focus, difficulty thinking, anxiety, physical symptoms, etc.
• Requests come from the medical team to make life-saving decisions and provide directions regarding end-of-life preferences (i.e., Advance Directive documents).
• Details of medical problems, medical history requests, and registration information occupy the caregiver’s time.
• At the same time, the caregiver feels a pressing concern to call other family members to inform them of the emergency. In addition, if the accident victim is alert, the caregiver may provide support and comfort to them.
• Eventually, the caregiver receives the final medical update regarding the family member’s medical status.  During this critical update, the caregiver finds out about their potential future. During this critical conversation, the caregiver must decide about surgery, life support, amputations, and potentially heroic measures.
• Life and death decisions are often made alone by the caregiver because other family members who are still en route to the location are prohibited to the area by hospital policy. As a result, caregivers make those decisions when their emotions are fragile and, truthfully, they hardly know what is happening around them.
• During the next few days in the hospital, the caregiver gets little rest and has a lot of anxiety and fear.
• As the family member hopefully progresses and moves out of intensive care to a patient floor, the nursing staff prepares the caregiver for what to expect going home. The Care Coordinator discusses potential equipment needs for discharge planning. A discussion regarding transportation to get home starts the planning process for obtaining an ambulance service if the family member cannot walk.
• Throughout the hospital admission, the caregiver monitors the patient’s care for accurate timing, safe delivery, and appropriate practice.
• If the family member starts rehabilitation to continue recovery, the caregiver must learn to be both a physical and occupational therapist, maybe a speech therapist and counselor.
• Though being discharged is joyful, much preparation is required before someone can comfortably go home. For example, the house may need structural changes. Engineering and construction skills help adapt the home to the needs of the recovering family member.
• In preparing for home, the caregiver needs engineering and construction skills to adapt the house for their family member’s arrival. Often doors need widening for wheelchairs or new showers installed for bathing. Maybe they need to arrange for the installation of a new ramp?
• Rehab and prevention of wounds, pneumonia, or complications of immobility continue after returning home. Once home, long-term preventive maintenance programs begin.

Key Points: Issues with Crisis Caregiving

• In crises, emotional acceptance is beyond reach due to exhaustion. As a result, the individual can never restore their energy reserves and runs “on fumes”. 
• Burnout –Caregivers living in crisis get little rest. They rarely have time to eat or sleep and live on adrenaline and caffeine. As a result, they are exhausted most of the time.  They walk around in a fog of sleepiness as a way of life and fall asleep without warning, such as when driving, resulting in a risk for themselves and others.
• Many caregivers become ill or injured themselves due to neglecting their health.
• Some caregivers become depressed or commit suicide due to caregiver burnout after months and years of caregiving with no relief. 

Situation 3 Progressive Decline of Chronic Health Condition: Background:

The family member has a chronic health condition and neglects his health for an extended period, worsening his condition. As a result, his physical state declines until he needs assistance for many activities associated with caring for his home. Requests for help come more frequently and begin to include requests to help with activities of daily living, too.

Chain of Events:

• The family member initially performs self-care without assistance.
• However, his condition declines over time until he requires part-time help.
• Periods where he needs periodic help decrease. In its place, longer periods of continuous care occur where the caregiver provides support for more activities of daily living and performs greater assistance with home management.
• The caregiver becomes exhausted trying to manage both the responsibilities of full-time caregiving and their family obligations. As a result, their own health and well-being may suffer, job performance at work declines, and their family complains that they are never at home.   
• The family member and caregiver discuss the need for a full-time helper staying with the caregiver daily and the family member serving as a coordinator of care rather than a provider.

Key Points: Issues with Chronic Caregiving

• The caregiver gradually assumes additional duties as the needs of the family member slowly grow over time.  Therefore, the caregiver absorbs the extra responsibilities into their daily routine, not realizing the additional work assumed over time. Eventually, they feel the weight of the extra burden and are at risk of developing caregiver fatigue or caregiver burnout.
• The caregiver becomes grumpier with fatigue, or if they have burnout, they just no longer care. As a result, the caregiver becomes at high risk of developing chronic healthcare problems due to neglecting their care. 
• Many caregivers set aside their medical appointments, eat poorly, get limited sleep, rarely exercise, and may use caffeine or over-eat for energy—all of which increase their risk factors for future healthcare problems.  As a result, many of them suffer from chronic health problems that cause them to succumb to fatal events before the death of the one under their care.

Situation 4 Dementia: Background:

A family member develops forgetfulness, begins to wander, becomes fearful, does not recognize others, neglects to pay bills, and gets lost easily. Completing self-care becomes increasingly challenging.  He wanders around the house at night instead of sleeping, although he rarely naps during the day. People he should know well, he no longer recognizes, including his children and siblings.  He may not be sure about when and where he is at any given time.

Chain of Events:

• The family member’s dementia is progressively getting worse over several months. His caregiver is concerned about safety because he wanders outside the house. On three occasions, he has lost his way home after multiple attempts to find the way himself.
• The three adult children plan a family meeting to discuss admitting their father to an Alzheimer’s care facility.
• After looking at several options, the family decides which one he can afford and the risks they are willing to assume based on the current symptoms of dementia displayed.
• They decide to keep him at home and install alarm systems to alert them to his wandering.
• After a short period, they realize the alarms do not prevent him from leaving and decide for his safety, admission to a facility that specializes in dementia care is best.

Key Points: Issues with Dementia

• Fatigue is a significant problem for many people with dementia due to night-time wandering.  Not only is the family member tired, but the caregiver is as well. Therefore, the caregiver must continually check on the family member’s location and safety to ensure they have not escaped the house, fallen, or gotten injured.
• Frequently, caregivers who provide care to dementia family members suffer from multiple health issues. Many caregivers use caffeine to stay awake and overeat for the same reason. Accidents are common due to inattention associated with fatigue. In addition, other common problems are substance abuse issues, divorce, and family issues.
• Depression and suicide rates are high among caregivers who consider death a means of escape from their burden.  

Situation 5 End of Life:

Background:

The family member receives a terminal diagnosis and chooses hospice care.

Chain of Events:

• With hospice, the family member elects to die at home. The healthcare organization supports the family by training them in comfort measures and the death and dying process.
• Usually, an aide is assigned to provide the family member with a bath several times a week.  Otherwise, the family provides all care.

Key Points: Issues with End of life

• The end-of-life period is a mixture of emotions. It can be a time of sorrow due to pending loss, grief, fear, and depression. However, people often also address issues they want to resolve before it’s too late.
• Unfortunately, family conflicts sometimes arise over the property in anticipation of gifts and inheritance matters. Final estate matters may also create turmoil as family members declare their rights of inheritance.