HOw You Become A Caregiver Matters

How You Become a Caregiver Matters – Emotional Impact

   Because how a person becomes a caregiver matters in shaping the emotional acceptance of a caregiver/care recipient relationship, it’s crucial to understand the differences in how they occur.  Never underestimate the power of emotion on how it affects someone’s perspective. 

emergency evacuation of injuried party in helicopter

Sudden Events 

   When a person faces a grave medical situation, perhaps life-threatening and without warning, their body often protects itself by going into shock. Regardless of being in shock, decisions must happen, and the caregiver may be the only one available to make them. At that point, it’s official. They are now the primary caregiver. 

     Without any preparation, the new caregiver starts making decisions and interpreting information. From that point, until the crisis is over, they get little sleep, feel emotionally unstable, and have difficulty thinking clearly. However, during this time, they are asked to make dozens of decisions and take in as many new pieces of vital information. As the crisis evolves, the caregiver continues to receive news; some shared one time only. It’s easy to get details confused, not knowing the jargon, and being sleep deprived. 

     Finally, the day of discharge arrives, and a print-out of instructions provided to the caregiver explaining what to do once they get home. At this point, only days may have separated discharge from intensive care status, but the caregiver is now on their own with only a few sheets of paper to guide them. The caregiver is afraid of what might be in their future.

Man patient with gastrostomy receiving tube feeding in hospital bed.

Chronic (Long Term) Events

     If the circumstances leading to someone being a caregiver are such that they occur over months and years, they have a while to adjust to the idea of becoming a caregiver. They see the train heading their way, have time to prepare, and research what to do. Being able to prepare can make a difference. The caregiver and care recipient has time to plan and identify participation triggers for the caregiver. In this manner, there can be a staged progression of intervention. Virginia ranks 42th in the country for prevalence of mental illness in the United States but lower rates of access to care. That means that caregivers who have family members with a mental health  conditions find it almost impossible to obtain assistance and the burden for care falls heavily onto their shoulders. (Mental Health in America – Adult Data)

portrait of happy woman and man with disability together on spring lawn

 
Inherited Role

     Other times, they inherit the role due to the death of a family member who was the caregiver for a disabled family member for years. The new caregiver is the designed family replacement based on his position in the family (oldest child and therefore, heir to the responsibility).  In such cases, various emotions may show up depending on the individual’s hopes for the future and how they feel about the family’s expectations for giving up their life’s dreams. The new caregiver may feel resentment, resignation, or acceptance, or a combination of them.  

How You Become A Caregiver - Event Impact

Background:

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

Chain of Events:
  • The caregiver calls weekly and notices some mistakes in what her mother says but assumes that it is typical “old age” and thinks nothing of it. No alarm bells go off after their telephone calls. She would forget someone’s name or a place they had visited but nothing significant.
  • Since the caregiver used Facetime to talk to her mother, she began to notice some changes in her Mom’s appearance.  No longer was she dressing up each day.  In fact, many days, she seemed to stay in her PJs.  She began to look different Changes in body posture, tone of voice, facial expressions, general appearance, and other background clues (dirty clothes, trash accumulation) indicated that her Mom was not taking care of herself.
  • Neighbors and acquaintances started calling the daughter to report they had concerns for her Mom’s safety. 
  • The caregiver receives a call from a neighbor who reports that she found her Mom wandering around in her garden at night, pulling up plants. A crisis occurs that requires the new caregiver to rescue the family member, and the full extent of the problem becomes apparent.
Challenges with Long Distance Care
  • Limited time at the location where the family member resides.
  • Unfamiliar with local resources.
  • Conflict with taking sufficient time away from work to deal with issues at the distant location.   Often home, work, and the office compete for caregiver’s time, and all have critical projects due at the same time. Determining who gets the focus is difficult to decide on whose need is more significant when all three are urgent.
  • Feelings of guilt, frustration, fear, anxiety, and a desire to take care of the family member are common.
  • Additional expenses to cover potentially 24-hour care or monitoring. Since the caregiver cannot be onsite, they may need to hire someone to stay with their family member full time. The expense of hiring someone else to do the care can be costly!
  • The new caregiver needs a way to feel confident that the family member is getting good care when the caregiver is not present. Creating a process to monitor the quality of care received and establishing an effective communication method is essential for everyone’s peace of mind.
Background:

For 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.  Through the hospital stay, the caregiver is anxious and afraid. She gets only short periods of sleep, eats poorly, rarely leaves the hospital, and then does business. 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.

As time wears on, 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.

Chain of Events:
  • After the next of kin receives notification of serious event, emotional shock develops, along with narrowing of focus, difficulty thinking, anxiety, physical symptoms, etc.
  • Requests come from the medical team to make decisions regarding life-saving measures and potential end-of-life preferences (i.e., Advance Directive documents).
  • Details of medical problems, requests for medical history and information for registration occupy the caregiver’s time. Meanwhile, during breaks, the caregiver must call other family members to update them on the status of the one who had the emergency. If the affected person is alert, the caregiver may be providing support and comfort to that person too.
  • Eventually, the caregiver receives the final determination regarding the family member’s medical status.  The caregiver either makes the final decision regarding the course of action or assists in making that decision with others. 
  • During the next few days in the hospital, the caregiver gets little rest and has a lot of anxiety alternating with fear. As the family member progresses and moves out of intensive care to the patient floors, the nursing staff begins to prepare the caregiver for what to expect going home. The Care Coordinator discusses what equipment may be needed, and a discussion regarding transportation to get home starts the planning process for either obtaining an ambulance service or other means.
  • 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, too.
  • Though being discharged is joyful, a lot of preparation is required before someone can comfortably go home. The house may need structural changes. Engineering and construction skills help in adapting the home to the needs of the recovering family member may be required.
  • 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.
Issues with Crisis Caregiving
  • Burnout –Caregivers living in crisis get little rest. They rarely have time to eat or sleep and live on adrenaline and caffeine. 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.
  • Becoming ill or injured themselves due to not taking care of themselves.
  • Developing depression or committing suicide from becoming overwhelmed.
Background:

The family member has a chronic health condition and does self-care for an extended period.  Over several years his health condition becomes worse. His physical state declines to the point that he needs help and begins to ask the future caregiver to assist him. Requests come more frequently until the family member comes to rely on the caregiver’s assistance in order to function daily.

Chain of Events:
  • The family member initially performs self-care without assistance.
  • His condition declines to the point that he needs part-time help.
  • Periods of intermittent dependence increase with progressively prolonged time frames where total dependence occur. 
  • The family member and caregiver discuss the need for full-time help with the caregiver serving as a coordinator of care rather than a provider.
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.
  • Caregiver fatigue and burnout are both characterized by withdrawal and symptoms of depression to different degrees. With fatigue, the caregiver demonstrates a grumpier attitude, whereas with burnout, they just no longer care.  Their emotions have become so numb, and they feel so isolated that they no longer feel anything.  The term “burnout” is an appropriate description because everything they feel has burned out of them, and there is nothing left to give.
  • Caregivers providing long term care are at high risk for developing chronic healthcare problems themselves due to the tendency to neglect their own care.  Many caregivers set aside their own 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.
Background:

A family member becomes forgetful, begins to wander, becomes fearful, does not recognize others, forgets to pay bills, and gets lost easily. Completing self-care becomes increasingly challenging.  At night, he wanders around the house instead of sleeping, although he rarely naps during the day. People he should know well, he no longer recognize, including his own children and siblings.  He may not be sure about when and where he is at any given time. If this sounds familiar, then your family member may have dementia.  Alzheimer’s is a form of dementia. 

Chain of Events:
  • The family member is demonstrating signs of dementia, which began to get progressively 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.
  • A family meeting of the three adult children is planned to discuss whether he should be admitted to a 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 compared the benefits of a facility geared toward patients with Alzheimer’s to try to find their caregivers and install alarms systems to alert them to his wandering. The caregiver’s children decided he would be safer in a facility and proceeded with making plans for admission.
Issues with Dementia
  • Fatigue is a significant problem for many people with dementia.  The level of fatigue is extreme because the family member is often up all night. Not only is the family member tired, but the caregiver is as well. 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.
  • Caregiver health issues are common due to caffeine’s use to stay awake and overeating for the same reason. An increase in accidents also occurs.  Many have substance abuse issues, divorce, or family issues.
  • Depression and suicide rates are high for caregivers since death is considered a means of escape from their burden.  
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 the use of comfort measures and the death and dying process.
  • Usually, an aide is assigned to provide the family member a bath several a week.  Otherwise, the family provides all care.
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.  People often also dig up old baggage they want to address and resolve before it’s too late.
  • Unfortunately, family conflicts may 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.

 

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