Should I Become a Family Caregiver?

Life expectancy throughout the world is increasing linearly without signs of slowing down.

Likewise, we can only expect our elder parents to live longer than before.  However, though we are living longer, our health problems don’t go away. Because of this, more than half of those over age 85 will need some assistance requiring caregiving.  Typical Americans will spend about 20 years of their lives caring for their older parents. So, if we spend a quarter of our lives in this capacity, it makes sense that we should be prepared.  Unfortunately, this isn’t something you pick up in school.

Your elder parent or loved one may be developing some signs indicating they will need a caregiver including:

  • Difficulty with mobility, balance
  • Muscle weight loss
  • Loss of interest in hobbies
  • Changes in mood
  • Confusion, forgetfulness
  • Poor judgment (falling for sales pitches, scams, etc)
  • Poor hygiene, neglecting housework, neglecting bill payments
  • Incontinence

When do these problems start to happen?  Typically, in their mid to late 70s.

Unfortunately, these changes in health could lead to placement in a long-term care facility.  Most families don’t want to even think about the idea of putting their loved ones in a nursing home.  Keeping your elder parents at home, and taking care of them full or part-time (with the help of another family member or an in-home caregiver) might provide you more peace of mind, and avoid problems with guilt. However, if you choose this path, there are too many serious factors for you to consider first, before simply waiting for these signs to occur in your elder parents until you take action.

Caregiver Statistics

The surprising number of caregivers and the amount they contribute to their elder parents is overwhelming:

  • In their report, Metlife reported that the percentage of adult children providing personal care and/or financial assistance to a parent has more than tripled over the past 20 years, amounting to around a quarter of adult children.
  • The Associated Press-NORC survey found that four in ten Americans provided long-term care to an older relative or friend.  
  • Twenty-five percent of these (amounting to ten million adult children) provide caregiving duties on a full-time basis.  
  • A 2015 survey from the National Alliance for Caregiving found that there were more than 43.5 million unpaid caregivers, and will continue to increase exponentially.
  • The total estimated amount of lost wages, pension, and social security benefits total $3 trillion for these caregivers.
  • The generation of 50+ caregivers lost an average total of $303,000 ($324,000 for women or $283,000 for men) when they leave the workforce early to care for an aging parent.  
  • AARP estimates 60% of caregivers are employed.  But working and non-working adult children were equally as likely to provide basic care to their parents–basic care being defined as dressing, feeding, bathing, and other activities of daily living– for at least 100 hours or more in the last two years, and/or financial assistance of $500 in the last two years.

Out-of-Pocket Expenses for Caregiving

Because many retirees could not save enough, or incurred unforeseen costs that ate up much of their retirement savings, these expenses have to be assumed by many adult children. Where are these out of pocket expenses going?  They go to food, clothing, transportation, housing and home repairs, medication, medical services, insurance premiums and medical fees not covered by insurance to name a few. For insurance one also has to factor in deductibles, co-payments, and noncovered medical costs, such as dental care, glasses or hearing aids.

  • Out-of-pocket expenses alone from adult children for caregiving are estimated to be from $5000-$7000 annually
  • One in four adult children spend at least $10,0000 annually, and 15% spend more than $20,000 a year for their elder parents.
  • In another study, family members spent an average of $7000 or nearly 20 percent of their income, in out-of-pocket costs for parents living nearby.
  • Family members spent an average of about $12000 for elderly parents who didn’t live nearby.
  • In fact, in the last five years of life, the average out-of-pocket costs paid by caregivers for Medicare recipients’ medical services top $38,000.
  • Compare: The average out-of-pocket cost of raising a child from 0 to 17 is about $234,000. But for families with an older adult with serious long-term care needs, including the use of paid care, out-of-pocket costs average $140,000.  These costs typically aren’t paid over 18 years, rather, a span of only 4 or 5 years.
  • The White House reported that for those parents’ requiring more intensive long-term help with their activities of daily living, adult children’s out-of-pocket-costs average $72,000. However, of those who do in fact contribute anything to these costs, the average is a staggering $140,000.
  • In another study, 50% of nursing home expenses were found to be paid-out-of-pocket by families, with adult children contributing on average $10,000 a year.
  • The lifetime cost of care for Alzheimer’s patients is $174,000 and could grow by more than 400 percent by 2050.

Job Consequences of Caregiving for Family Members

Ok, now you’re thinking that you can’t afford to quit with these kinds of costs ahead.  But there are more issues to consider before you resign:

The financial costs and consequences of caregiving can be astonishing. Though AARP reports that about 12 percent of women give up their jobs to be full-time caregivers, others keep their jobs, but still must face serious consequences which include: reduced wages, reduced benefits, loss of job security, all when the caregiver is starting to need them more than ever.

For those with the most intense level of caregiving responsibility:

  • 92% have major changes in working patterns for their regular jobs
  • 83% arrive late, need to leave early or take time off
  • 41% take a leave of absence
  • 37% switch from full to part-time to due to their caregiving responsibilities.

Additionally, a working caregiver’s own health can deteriorate due to the increased burdens: with more chronic health conditions and medical debt vs. non-caregivers.

And do you think you have the time to be a part-time caregiver?

Average Time Spent Caregiving

  • Two weeks per month
    • Cooking, shopping, cleaning, driving
  • 1 week per month
    • Activities of daily living such as bathing, feeding, hygiene, dressing
  • Two days per month
    • Administering medication, phone work getting doctor visits in order, researching health problems on the internet, managing finances  

Even on a part-time basis, the average caregiver spends more than 24 hours a week caring for a loved one. Still, almost 20% of family caregivers provide full-time care (40 or more hours per week).

Questions to Ask Yourself Before Becoming a Family Caregiver

  1. Do you have enough savings to cover your family for several years, to still have a good retirement, and cover the out-of-pocket expenses detailed above?  
  2. Are there major life expenses you could decrease, like home downsizing, selling a car?
  3. Could you work part-time to alleviate income loss?
  4. How much would you save on commuting, work clothes, child care, eating out, etc.?
  5. How easy would it be to re-enter the workforce?
  6. Could you work from home, or do freelancing?
  7. Family security: if your spouse were laid off, how would your family get by?  
  8. Will you retain health insurance coverage?  

More Factors to Think About Before Quitting Your Job

Assess your parents’ needed level of care, and where they may be in the next few years.  If one of your parents, for example, has early-stage dementia, his condition could deteriorate slowly but surely, and you may need to make contingencies because of this.  Assess your parents’ financial situation.  Would they be eligible for certain resources such as Medicaid?  Are one or both of your parents veterans? They could be entitled to veterans benefits as well. Consider the fact that though you might not like it, you simply may be unable to provide the level of care your parents could achieve in assisted living or with a home care professional.

Who Is a Caregiver?

Rosalyn Carter once said:

 “There are only four kinds of people in the world:

Those who have been caregivers,

those who are currently caregivers,

those who will be caregivers,

and those who will need caregivers.”

We would define caregivers as those who assist others who cannot perform their normal activities of daily living but also strive to support their quality of life.  Within the domain of family or friends, caregivers are typically volunteers.

What kind of caregiver could you be?

Sandwich Caregiver

You are “sandwiched” between two generations, your children making one slice of the bread, and your elder parents or loved one(s) the other.  More “sandwich” caregivers are women, average around 54 years in age, and have teenage children.

Working Caregiver

Some sandwich generation caregivers fall in this category and aren’t necessarily at home full time with their parents.  Many adults can’t quit their jobs for several reasons. Still, this may make for conflicts at work, especially if the employer is not proactively assisting workers with elder parents needing care.  On the other hand, some employers actually offer referrals to find adult care or caregivers or allow for employee time off for medical visits with their parents. Now with the family medical leave act (FMLA), employers in the U.S. actually must grant employees up to 12 weeks of unpaid leave every year to take care of immediate family members with serious health conditions.  

Long-Distance Caregiver

I was a long-distance caregiver to a degree, though my mother did most of the work taking care of my dad.  Long-distance caregivers live too far (the Mayo clinic places this as close as 1 hour away) to physically be with their elder parent needing care.  With modern technology, however, some degree of observation can be made to reduce the chances of dangerous situations.  For example, some of my patients who live alone have told me they lost consciousness, or fell and were on the floor many hours before another person rescued them.  A long-distance caregiver could have checked in intermittently with such a patient on a remote basis with the aid of cameras. Elderly medical alert systems can be a big help as well.  In addition, long-distance caregivers aren’t prevented from helping with finances, arranging for home care, gathering information such as medication schedules and paperwork.

The National Institute on Aging provides more resources on caregiving that you may find useful.

Spousal Caregiver

The most common caregiver, with a median age of 64. These usually prefer taking care of their spouses rather than relying on the help of others.  In fact, 58% of spousal caregivers have no help from anyone, while 84% have no visits from home care aides. Burnout is a common problem within this group as they truly are lone rangers. Spousal caregivers don’t recognize how much they need respite care and help from their families.

Why Become a Family Home Caregiver?

Simply put, caregiving is an act of love. And when the person being cared for is a parent, that action can be profoundly meaningful.

For many, the chance to care for a parent comes with the opportunity to pay back the lifetime of love and sacrifice their parents made for them. It also increases the opportunity for quality time with your parent.  In fact, nearly 8 in 10 family caregivers say that the experience strengthened their relationship with their loved one.

With the costs outlined above from out-of-pocket expenses alone, but also in lost wages, and the long hours required as essentially a volunteer, becoming a caregiver is definitely a labor of love, a veritable corporal work of mercy.  

Keep in mind that those hours spent with your elder parent(s) or loved one will engender a deeper relationship with them. This relationship can become so strong, that when this role ends, a sense of loss of purpose or emptiness can even ensue for the caregiver. But those who become caregivers aren’t counting on what they receive, it is mostly a selfless act of love.  Your elder parents or elder relatives brought you into this world, raised you, sacrificed for you. Now you feel it’s your turn, and hopefully, your example will be passed on to your children if you need their assistance as well.

Still, there are some immediate advantages to becoming a caregiver.  Peace of mind is indispensable. For example, a parent with tendencies to wander can make you worry if she is safe at home while you work.  

Pros to Becoming a Family Caregiver

  • No more commuting
  • Spending less money on gas/transportation/daycare/nanny/paid caregiving for elder parent
  • Less extra time and effort at work such as pot luck dinner preparation, or after-hours meetings.
  • More time with your own family vs the daily grind from 6:00 to 6:00, running to get home to take care of dinner and house chores.  
  • Not having to sacrifice your children’s plays, quality time with their homework, important awards for your parents because of job requirements.
  • For those in the sandwich generation: your child is a child only once.  Now is a chance to be full time with them as well.
  • One economic consideration in favor of caregiving: if your elder parent needs to be placed in a nursing home, your family could be responsible for $80,000 to start before factoring in inflation.
  • Some states actually provide unemployment insurance for eligible caregivers who leave their job.

Another Pro: Grandparent Caregivers

For those in the sandwich generation, if your parents move in so you may better take care of them, in turn, they can help out with your younger kids.

  • Grandparents provide childcare for 25% of children under the age of 5 (40% for Hispanic grandparents).  This can mean a great deal of savings considering the cost of daycare.
  • Let’s not forget that older grandchildren can also provide a great deal of help in the care.

Cons Against Becoming a Family Caregiver

  • You may become financially vulnerable.
  • You could see a decrease in available funds to save for children’s high school, college, or marriage.
  • Your retirement fund will lose its annual contributions
  • Employability after an extended break may become difficult due to increased competition or skills becoming out of date.
  • You may lose your health insurance (don’t let this lapse!).
  • Contributions for your social security will cease.
  • You may see an increase in chores, errands, paperwork.
  • You may have decreased leisure time for yourself, and lost time with friends and family.
  • Burnout is a notorious problem for caregivers accompanied by negative health effects, stress, anxiety or depression.  In fact, depression can be experienced in 53% of caregivers.  Yet there are ways to help confront these problems including exercise and maintaining a good diet and making sure you get time for yourself through respite.
  • For those who keep their jobs, but also come home daily to care for their elderly parents, more fatigue could set in with this extra responsibility.  Missing work to take care of medical appointments for your parent(s) could be noticed by your employer.
  • Having an in-law move in your home can bring a whole new set of problems that your spouse may not be open to, and cause stress in your marriage relationship. The relationship with your spouse and in-laws can also be at risk of deteriorating, once you are all under one roof.

Tips to Consider Before Becoming a Family Caregiver

  1. Calculate lost wages, benefits and retirement income before quitting
  2. Caregivers stand to lose thousands of dollars as a consequence of quitting, and therefore should consider the option of working part-time, or taking a lower-paying job with better hours and commuting time.
  3. If there is some flexibility in the caregiving required that could be distributed with other family members, discuss this. For example, if your husband or sibling could pitch in accordingly.
  4. Some in their roles as caregivers could begin neglecting their own health.  They could forget annual screening tests such as mammograms, Pap tests, prostate checks, flu shots, dental visits or follow up visits to the doctor.  Begin good health habits now, and promise yourself you won’t give these up before becoming a caregiver.
  5. Can you find another job once your caregiving responsibilities are reduced sufficiently to return to work?
  6. What alternatives to quitting are there, such as taking other shifts, working part-time, working from home?
  7. Let your employer know your situation with your elder parent or loved one in advance.
  8. Ask your unemployment office in advance if your state provides benefits for caregivers forced to leave their jobs.  Ask them the best time to file a claim, and how to go about doing it.
  9. Consider an adult daycare program, an economic alternative in many cases.
  10. Consider respite care—basically, this means getting a substitute caregiver for yourself for a short period of time, so that you can take a break, or take care of important things for yourself and your family.
  11. Technology is making delivery service easier and more economical these days.  Find a store that delivers, and save time by ordering groceries online, especially if you feel under the weather.
  12. Get in better physical shape.  Be prepared ahead of time to help lift your elder parent(s) or loved ones in case they fall.  Just helping them up and setting them back down can be really hard on your back. Still, there are some good videos available to help mitigate these risks.

Other Things to Help You Prepare for Becoming Your Elder Parents’ or Loved Ones’ Caregiver

  1. Have a talk with your elder parents about their finances: This may take time.  Some may not want to share this information with you. But at least you could get them to update their financial advisor, accountant, or lawyer.
  2. With their permission, after the dreaded financial “talk”, consider listing their bank accounts. Especially if you are becoming their power of attorney, access to these funds is important.
  3. List their medical insurance policies, and list all their doctors, dentists, etc: verify any appointments coming up, and make sure their medical bills are being paid accordingly.  
  4. List all their medications and diagnoses.
  5. Find out if they have advance directives.  You can find these online for your state.

In summary, though completely under-reported, becoming a family caregiver belongs to the category of major life changes, including moving, getting married, or having your first child, that are notorious for incurring a great deal of stress.  It makes sense then to prepare well in advance with your elder parents or loved ones so that this transition will be done in such a way as to avoid a crisis mode as I experienced with my family. Instead, this change in life can become meaningful, graceful, allowing you to develop a more peaceful and deep relationship with your elder parents or loved ones and other family caregivers helping you out as well.

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