The Accidental Caregiver

July 11, 2013 - By the NCPC

You've heard people say it and maybe you have even said it yourself.  "Don’t worry Mom or Dad, I’ll take care of you in your old age."

This always seems to be a simple loving gesture on your part as you see them beginning to age and settle into retirement.  The thought of their actually failing in health or mental capabilities seems absurd or at most, years down the road. Thus it catches most children and spouses unprepared and sometimes surprised when their loved one needs care and help with daily living activities.
 
A stroke, injury or sudden illness may result in the immediate need for a significant caregiving commitment.  On the other hand a slowly progressing infirmity of old age or the slow onset of dementia may require intermittent caregiving.  Either way, if you have not made provisions for this, you will accidentally become a "caregiver."

Former first lady Rosalynn Carter made this statement,

 "There are only four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, those who will need caregivers."

Statistics show that the possibility of becoming a family caregiver grows yearly.

"43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer's disease or other dementia."
Alzheimer's Association, 2011 Alzheimer's Disease Facts and Figures, Alzheimer's and Dementia , Vol.7, Issue 2.

"The value of unpaid family caregivers will likely continue to be the largest source of long-term care services in the U.S., and the aging population 65 and over will more than double between the years 2000 and 2030, increasing to 71.5 million from 35.1 million in 2000." Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1

There are two types of caregiving scenarios, Formal and Informal.

Formal Caregivers

Formal caregivers are care providers associated with a service system.  Service systems might include for-profit or nonprofit nursing homes, intermediate care facilities, assisted living, home care agencies, community services, hospice, church or charity service groups, adult day care, senior centers, association services and state aging services. Professional care managers and legal and financial professionals can also be of help.  Some these formal caregiver services are covered by Health Insurance, Long Term Care Insurance, Medicare and VA Benefits.  Otherwise for formal care where there is a charge, payment is out-of-pocket by the individual or family members.  Private pay, out-of-pocket for long term care services can be costly and advance financial planning is advised when possible.

Informal Caregivers

Informal caregivers are family, friends, neighbors, or church members who provide unpaid care out of love, respect, obligation, or friendship to a disabled person. 
The number of informal caregivers range from 20 million to 50 million people.  This could represent about 20% of the total population providing part-time or full-time care for loved ones. 

About two-thirds of those caregivers for people over age 50 are employed full-time or part-time and two-thirds of those–about 45% of all working caregivers–report having to rearrange their work schedule decrease their hours or take an unpaid leave in order to meet their caregiving responsibilities. 

The average amount of time informal caregivers provide assistance is 4.5 years, but 20% will provide care for 5 years or longer (National long term care survey 1999).

Below are some of the activities provided by or supervised by informal caregivers. The Accidental Caregivers, involved in this type of care, will find themselves picking up a few things that need to be done or supervised in the beginning and adding more as the need increases.

• Managing money and paying bills
• Writing letters or notes
• Making repairs to the home, maintaining a yard, and removing snow
• Providing comfort and assurance or arranging for professional counseling
• Answering the phone
• Making arrangements for meeting medical needs and doctors' appointments
• Shopping and running errands
• Providing transportation
• Maintaining the household
• Attending to personal hygiene and personal grooming
• Administering medications
• Help with walking, lifting, and bathing
• Help with using the bathroom and with incontinence
• Providing pain management
• Preventing unsafe behavior and preventing wandering
• Feeding
• Providing meals
• Doing the laundry
• 24 hour care and monitoring
• Nutrition management
• Financial planning
• Legal directives
• Medical directives
• End of life planning

Understanding the Progression of Care Commitment

The chart below illustrates the relationship of informal care to formal care.  As care needs increase, both in the number of hours required and in the number or intensity of activities requiring help, there is a greater need for the services of formal caregivers.

(The Four Steps of Long Term Care Planning, National Care Planning Council)

"Unfortunately, many informal caregivers become so focused on their task, they don't realize they are getting in over their heads and that they have reached the point where partial or total formal caregiving is necessary.  Managing their own needs and daily schedule along with those of the person they are caring for can become so consuming and energy depleting that the caregiver themselves are in need of care.  It becomes time to bring in other family members, professional services and medical advisors to create a plan of care that is best for all involved." - National Care Planning Council

Caregiver stress and caregiver burnout are serious issues that face caregivers providing both formal and informal care. Make certain you take care of yourself as well as take care of your loved one. The work of caregiver is difficult, but as caregiver Marlo Solitto said "Caregiving can be one of the most rewarding experiences of your life."