The Realities of Family Caregiving

Care communities housing
By Pamela D. Wilson, CSA, MS, BS/BA, CG

Many young people I know have never stepped inside a nursing home.  Yet our parents and grandparents have sickening visions of nursing homes that play in their minds like a horror movie especially when they think about getting older and the possibility that they might have to live in a nursing home.

The nursing environment has changed significantly from the memory our parents and grandparents hold, however the fear of being “put away” remains in the minds of older adults. My own mother made us promise never to put her in a nursing home or the threat was that she would come back and haunt us. Fortunately my mother passed away never having spent a single day in a nursing home.

Family CaregivingThe general population is not as fortunate.  Few realize that poor financial planning is exactly what places individuals who need care in nursing homes.  Medicare does not pay for custodial care which is the type of care that older adults benefit from to remain independent.

Working children are shocked to learn Medicare does not provide for community care when parents age and need care.  And unless you’ve personally experienced caregiving it’s difficult to understand the stress, pressure and sleepless nights experienced by caregivers concerned about caring for loved ones and how they will financially make ends meet.

Look at the recent economic woes.  The stock market over the last decade has been a rollercoaster of declines and finally in 2013 a few gains.  Most retirement accounts have only returned to their previous value of 10 years prior.  Yet the cost of living increases annually.  The cost of one year in a nursing home averages $75,000; one year in assisted living $35,000.  If you or your parents had to pay these expenses today are their sufficient finances to meet these expenses?  For the majority, the answer is no.

So what is the answer?  It’s not relying on the U.S. healthcare system, a system trying to figure out how to rescue social security, Medicare and Medicaid.  The answer is acknowledging the need for and planning for long term care. Long term care insurance is one component.

Older people view long term care insurance as nursing home insurance because in their minds, a nursing home is where one goes to receive care when old and frail.  But the opposite is true.  Long term care insurance provides options to avoid nursing home placement like in home care, day programs, assisted living and more.

The majority of individuals over age 65 will require a long term care stay.  Over 40% of persons will experience a long term care stay lasting two or more years. This can be a long time if you are in a nursing home in a shared room – not private room, with a roommate you dislike. It can be even longer if you are in a nursing home reimbursed by Medicaid versus retirement savings or long term care insurance.

For an individual needing care, a nursing home is generally the last resort. Other preferred options include home care, day care and assisted living. When children become involved in the care of their parents it is usually at an early stage meaning that caring for parents can last for years. This is the point where custodial care is most helpful, the type of care not reimbursed by insurance.

The role of a caregiver involves time at work on the phone speaking to parents and health care providers, arriving at work late or leaving early to accommodate medical and other appointments, reducing working hours, taking a leave of absence or resigning a good position to move across country to take care of parents.  Logically, does it sound reasonable to give up paid employment and saving for retirement to take care of a parent?  Years later the math doesn’t work out and adult children caregivers who opted out of careers are filled with regret.

Adult children caregivers living in town spend evenings and weekends at the home of their parents and experience great frustration or overwhelm because their parents believe that only children can provider care.  Caregiving becomes like a part time unpaid job that provides free assisted living benefits to parents but no benefit, other than exhaustion, for the children.  Heaven forbid parents would consider paid caregivers as an option.  Emotions run high. Caregivers become angry and guilt ridden.  Parents expect more and more and more.

This is the reality of family caregivers that continues to escalate because of current population estimates.  The population continues to age.  For society, this requires a new way of thinking that includes educating employees and early retirees about aging, costs of care and preventative measures like long term care insurance.

© 2012, 2013 Pamela D. Wilson, All Rights Reserved. 

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