Nancy C. Stallings, M.A.M. is Manager of the Caregiver Support Program and Elder Abuse Prevention at Salt Lake County Aging Services.

This program offers information and resources, case management, caregiver training, support groups, and respite for caregivers of older adults.

Prior to Caregiver Support, Nancy served as Training Specialist for Adult Protective Services, State of Utah.

Her background is in education and human resources / organizational behavior.

Have YOU Planned on Caregiving?

by Nancy C. Stallings, M.A.M.

"The scary thing about middle age is knowing that you are going to outgrow it." President Jimmy Carter

Middle age-the age of America's Baby Boomers-is when we often come face-to-face with the realities and challenges of aging and dependence. Middle age is also when more than 22 million Americans will become caregivers for parents, siblings and spouses.

We plan for our finances, we plan our gardens, we plan for our next car, vacation, job, child, etc-----but most resist planning for the time when we will be caregivers. The current reality is that 1:4 US households has a caregiver of an adult over age 50. Yes, we're living longer-that's the good news and also a caution. With longevity comes need for services and provisions for care. 95% of older adults live in the community. Most of us have at least one living parent. It's time to start talking about the realities of caregiving for dependent adults as a new facet of our family- and life cycle. Over the years, we will be caregiver of an adult perhaps 18-20 years although not at a single stretch.

When we have a baby, we send joyful announcements, we're showered with "congratulations" and gifts. When we become caregivers for an older spouse or parent, the occasion is rarely celebrated. Caregiving is very challenging and can be the hardest family responsibility we'll ever face. With older adults, there are lifelong patterns of independence and this often complicates the relationships. Disease, dementia, loss of independence, losses in mobility or functioning, and loss of friends or spouse affect the Care Receiver's behavior. There may be financial strains and the extra chores compete for the Caregiver's leisure time. And caregiving doesn't just affect home life; over half of working caregivers either quit their jobs or reduce their paid working hours in order to do the caregiving. Productivity and performance suffer; workers may be forced to decline promotions or transfers in order to maintain their caregiving responsibilities. What once was taken for granted is now impossible and it seems like life will never be the same.

It is estimated that family caregivers provide services worth $200 billion per year. And while they provide incredible levels of care, most caregivers neglect their own self-care. Caregiving is often physically demanding; lifting, sleep deprivation, the effects of long-term chronic stress all take a toll on the caregiver's health. Studies show that older spouse caregivers of dementia patients have three (3) times greater mortality. Also, the immune systems of spouse caregivers are affected and these caregivers report higher incidences of colds, flu and pneumonia.

The mental health aspects of caregiving are significant: symptoms of depression can linger for up to 3 years after the caregiving experience has ended. Most caregivers report an emotional rollercoaster of emotions. They can be angry at being trapped, at the disease that's affecting the care receiver or the others in the family that do not carry their share. Caregivers feel guilty because perhaps they want out of the caregiving role or because they "haven't done enough" when there's nothing more to do; being the healthy one can produce feelings of guilt. There's fear that they may be the next in line or that they can't handle the situation. There's frustration. Most of all, there's grief and prolonged loss as the person deteriorates, relationships fail and life gets overwhelming, long before the death occurs.

Studies show that most caregivers need 2 things primarily: respite and information. They also need validation for their challenges as well as their coping and strength. Most caregivers are so focused on what lies ahead that they don't look back at their strengths and accomplishments. Caregivers also need reassurance that it is ok to ask for help and seeking resources and services is vital to good caregiving. Some warning signs that a caregiver needs help:

  • You feel you're the only person enduring this
  • You no longer have any time or place to be alone for even a brief respite
  • Family relationships are breaking down because of the caregiving pressures
  • You're going on in a no-win situation just to avoid admitting failure
  • You refuse to think of yourself because "that would be selfish" (even though you're unselfish 99 % of the time)
  • Your coping methods have become destructive: overeating / under-eating, abusing drugs and/or alcohol or taking it out on your relative
  • It feels like there are no more happy times

Are you planning for your caregiving yet? It's similar to planning for a trip: figuring out how you will go and what "roads" are open is the best way to start. So for caregivers, it's important to know where to get information and services you may need before the need arises. The issues and challenges of caregiving have finally resulted in a new, federally-funded program, the National Family Caregiver Support Program. This program authorizes training, case management, support groups, family coaching, limited respite and supplies. Locally, your Area Agency on Aging can advise you of the program in your area. Caregivers can also find incredible amounts of information on the internet; search on "family caregiving" and link to online magazines, articles, support / e-mail groups, shopping, care techniques and strategies as well as disease-specific information.

Caregiving has been part of the Carter Family's experience. Former First Lady Rosalyn Carter tells us there are 4 kinds of people in the world:

  • Those who are caregivers.
  • Those who have been caregivers,
  • Those who will be caregivers, and
  • Those who will need caregivers.

Are you ready?

- Nancy C. Stallings, M.A.M.


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