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Becoming a Caregiver

Who Becomes A Caregiver?

Becoming a Caregiver   

     No two caregivers tell the same story of how they became caregivers. Each one has their unique experiences and needs; however, when a caregiver meets another for the first time, they can immediately relate to each other.  Since each caregiver begins the role from a different starting point, I cannot create a “caregiver’s orientation template” that perfectly meets everyone’s needs and has all the answers. Every caregiver situation is different, and each of us begins our journey at a different point along the path based on numerous factors.  However, we all have some shared needs when we first become caregivers.

Doctor explaining how to handle a medical situation once they get home.

 
Shared Needs
  • We must understand the language and practices of the healthcare systems that manage our family members’ care so that we can negotiate successfully.
  • We need to know how the body works to protect it, recognize developing problems, and understand how to intervene effectively.
  • To save time and money, we need to know how to locate the best resources and work the system most efficiently.
  • For the safety of our family and ourselves, we must know risk factors and safety measures for the procedures we perform, the equipment we use, and the potential emergencies that may develop for our family members.
  • It would help if you had a trustworthy sounding board with whom you can openly share concerns and talk out your fears; otherwise, the stress will overwhelm you.

     All the above are universal needs of caregivers; therefore, they appear first as topics with information about skills and conditions coming afterward under the “How to Do Things” section.

Who are caregivers?

      As I mentioned in the introduction, Building a Caregiving Foundation, anyone can become a caregiver, and most come to the role unprepared.  In reality, the only essential factor required to be a caregiver is someone who needs you to give them care provided you are willing to work as an independent contractor (i.e., work for yourself0. You will hear the term “caregiver’ used in a few ways.  There is the caregiver of children in daycare services or in-home.  An alternate phrase from days gone by was “baby-sitter” or “childcare aid.” These individuals are usually licensed if they work in a certified or licensed facility and unlicensed if they work in a home. On the other hand, is the caregiver who looks after someone with a medical condition. Medical caregivers are usually licensed or certified if they work for a facility and trained on the job if they work independently.

 
Do Caregivers Need Experience?

     No, most people learn to be caregivers with on-the-job training. Sometimes they assume the reins from another family member who teaches them what to do, or there is a healthcare person in the family or neighborhood who helps train them.  In most cases, they learn by doing. With knowledge of self-care coupled with the experience of raising children, they learn caregiving from what others show them or trial and error.

How old are caregivers?

     The majority of full-time caregivers are adults. However, the age varies depending on whether the care needed applies to an elderly parent, a young child, a young parent.   

  • Most seniors receive care from their spouses who are near their age. If their spouse is not available, the alternate caregiver selected is an adult child. 
  • The caregiver for young children is typically young adults. However, grandparents may be caregivers if parents are out of the picture. Aunts and Uncles are also known to be caregivers in those situations.
  • Surprisingly, school-age children and teenagers emerged as caregivers who provide care to disabled parents before and after school. Also, they often care for disabled siblings. However, there are a surprising number of young children who provide care for their parents before going to school each morning or assist siblings before and after school.

Where is care most often provided?

     Usually, caregivers provide care at home. The cost of care at a full-time facility is often prohibitive to many families who do not qualify for assistance from Medicaid, nor do they have Long-Term Care Insurance. Some caregivers hire care assistants to provide care in their homes, but for many, the cost is too much.  Most manage the care entirely on their own.

How Someone Becomes a CAregiver Impacts their Journey

   In my opinion, how a caregiver becomes a member of the card-carrying body of caregivers, significantly influences their future experiences and journey.  If a new caregiver suddenly takes on the responsibility of another person entirely with no time to prepare, the ability to sink or swim leans more to the sink side of the equation.

Sudden Events  

When caregiver suddenly acquires their roles, the precipitating event is usually something terrible and whatever the serious event often results in them being in shock.  Therefore, the caregiver makes decisions based on instinct.

Chronic (Long Term) Events

If the circumstances leading to someone being a caregiver are such that they occur over months and years, then the person has 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. It makes a difference.

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, and the new caregiver was the designed family replacement for the responsibility.  

    To illustrate the impact of how a person acquires the job can have on them becoming a caregiver, I’ll provide a few examples.  

Senior man with Alzheimer's disease putting shoe in microwave oven.

Back story:

The future caregiver lives several hours away from the family member.  Most of their interactions occur using a “device” such as a phone, tablet, or computer.  Personal visits are not regular and happen primarily by electronic means using Facetime.

Chain of Events:

  • The new caregiver is slow to detect a change in the family member, assuming that errors in conversation are natural “mistakes” everyone makes occasionally. No alarm bells go off after their telephone calls.
  • Since the caregiver uses Facetime software to see the family member during conversations, it is possible to recognize changes in the family member. Changes in body posture, tone of voice, facial expressions, general appearance, and other background clues (dirty clothes, trash accumulation) indicate that the family member is no longer taking care of herself.
  • Neighbors and acquaintances of the family member call the new caregiver to report unusual activities and their concerns. 
  • 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

  • Usually, under a time constraint when attempting to get care arranged while attending to the needs of the family member.
  • Conflicts arise between work/home/ and the family member’s needs. It’s often difficult to determine whose need is more critical when all three are urgent.
  • The additional travel time places a greater burden on the caregiver’s time constraints.  The caregiver’s employer may be reluctant to allow sufficient time off to include travel to, from, and time there to attend to the family member’s care.  While telework may be an option for some jobs, not all employers can support offsite work as an option for all job roles. 
  • Since the family member’s home is in a different location, the caregiver may not know the location of local resources, even if they lived in the area previously.  Locating agencies and finding street addresses can be a challenge that adds to the frustration and causes missed appointments. 
  • Feelings of guilt, frustration, fear, anxiety, and a desire to take care of the family member are common.
  • Since the caregiver cannot be onsite, they often have to hire someone else to be there for them. 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 method of communication is essential for everyone’s peace of mind.

Back Story:

All parties are healthy with all medical conditions under proper control. A potentially life-threatening car accident occurs. The family member’s injuries render him utterly dependent on someone else for all his care. His recovery time should take several months if not a year or more.

Chain of Events:

  • The new caregiver receives the notification of the accident and enters a state of emotional shock.
  • The medical team urgently requires decisions regarding life-saving measures and potential end-of-life preferences. Even though still in a state of shock, the new caregiver must decide what to tell them.
  • If an advanced directive exists, the new caregiver can consult it to determine the family member’s wishes. If not and the caregiver is the designated medical decision-maker, she must make the decision.
  • The caregiver role often becomes the decision-maker, the encourager, the one who supplies the strength to the one who needs care.
  • Many times they deliver bad news on behalf of the doctor as a means of supporting their family member. Maybe the bearer of bad news to them about the loss of function and need to help them restore their hope.
  • Unfortunately, the caregiver must function as a guardian protector in the ICU, as well as when they transfer to new locations within the healthcare facility. They become the one who keeps the continuity of care going between medical units and function as the “patients” security blanket.
  • If the family member enters rehab to continue recovery, the caregiver must learn to be both a physical and occupational therapist, maybe a speech therapist and counselor, too. Let’s not forget to learn the benefits of diet to help with tissue and nerve ending recovery once they get home.
  • Though going home 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.
  • In preparing for home, the caregiver needs skills in engineering and construction 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 – crisis caregivers get very little rest. They rarely have time to eat or sleep, and they live on adrenaline and caffeine. They are exhausted all the time.  They walk around in a fog of sleepiness as a way of life and fall asleep at any time resulting in a risk for everyone.
  • Becoming ill or injured themselves due to not taking care of themselves.
  • Developing depression or committing suicide from becoming overwhelmed.

Back Story:

The family member has a chronic health condition and does self-care for an extended period.  Over several years his health 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 expect the new caregiver’s assistance rather than considering it a request.

Chain of Events:

  • The family member can do self-care without assistance.
  • His condition declines to the point that he requests part-time help.
  • May have surges of caregiving activity where care needs intensify significantly. During those events, the caregiver assesses him thoroughly for signs of potential changes in his physical or mental status.

Issues with Chronic Caregiving

  • Often caregivers attempt to handle all the family member’s issues or concerns without seeking help. They may not realize how much extra they have taken upon themselves because it came gradually, or they feel the weight of responsibility for managing the care on their own. Either way, attempting to carry the burden single-handedly for an extended time can lead to caregiver fatigue or burnout.
  • With providing chronic caregiving, family caregivers are at high risk for developing chronic healthcare problems themselves due to neglecting self-care.  Many caregivers set aside their own medical appointments, eating on-the-run, get limited sleep, put their bodies in awkward lifting positions, and use caffeine to keep going—all of which increase their risk factors for future healthcare problems and frequently result in the caregiver dying before the family member receiving their care.

 

A family member becomes forgetful, begins to wander, becomes fearful, does not recognize others, forgets to pay bills, and gets lost easily. He finds it increasingly challenging to complete self-care tasks.  At night, he is up wandering the house instead of sleeping, although he rarely naps during the day.

Chain of Events:

  • The family member is demonstrating signs of dementia, which began to get progressively worse over several months. At this point, his safety is a concern because he wanders outside the house and attempts to have lost his way home on three occasions.
  • The family member is a father of three adult children who plan to have a family meeting to determine if it would be best to keep him home with a caregiver or place him in assisted living.
  • The family determines which option they can afford and the risks they are willing to assume based on the current symptoms of dementia displayed.
  • After comparing the benefits of a facility geared toward patients with Alzheimer’s as compared to trying to find their own caregivers and install alarms systems to alert them to his wandering, they 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 get up to 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 the use of caffeine 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.  

Back Story:

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

Chain of Events:

  • With hospice, the family member elects to die at home with the healthcare organization supporting the family by training them in the use of comfort measures and the death and dying process. Usually, an aide works periodically to give the family member a bed bath, but the family otherwise provides most of all other care.
  • An Aide comes to assist with a bath, but the caregiver may choose to bathe the family member more often. Needs to learn how to help get care recipient up and out of bed for toileting and other activities.
  • The family caregiver otherwise does all care until the family member dies.

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 its too late.
  • Unfortunately, family conflicts may arise over the property in anticipation of bequests and inheritance matters. Final estate matters may also create turmoil as family members declare their rights of inheritance.