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Who cares for the caregiver is a discussion largely dismissed by everyone, including the caregiver.  While the news reports families are playing a larger role as caregivers these days, there is little to no compensation available.   Rarely is there relief and resources are often scarce.

Defining Caregiver

The Family Caregiver Alliance National Center on Caregiving (FCA) provides this definition of a caregiver.

“A caregiver—sometimes called an informal caregiver—is an unpaid individual (for example, a spouse, partner, family member, friend, or neighbor) involved in assisting others with activities of daily living and/or medical tasks. Formal caregivers are paid care providers providing care in one’s home or in a care setting (day care, residential facility, long-term care facility).”

Caregivers by the Numbers

Why is it so important we discuss cares for the caregiver?  Because the number of caregivers is astonishing!  There is not an easier or more pleasant way to say it.  The FCA shares the following numbers in an article called “Caregiver Statistics: Demographics”.

• Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• About 34.2 million Americans have provided unpaid care to an adult age 50 or older in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• The majority of caregivers (82%) care for one other adult, while 15% care for 2 adults, and 3% for 3 or more adults. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Approximately 39.8 million caregivers provide care to adults (aged 18+) with a disability or illness or 16.6% of Americans. [Coughlin, J. (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management.]
• About 15.7 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

…And Caregivers by Gender

• 65% of care recipients are female, with an average age of 69.4. The younger the care recipient, the more likely the recipient is to be male. 45% of recipients aged 18-45 are male, while 33% of recipients aged 50 or higher are male. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Upwards of 75% of all caregivers are female and may spend as much as 50% more time providing care than males. [Institute on Aging. (2016). Read How IOA Views Aging in America.]
• Male caregivers are less likely to provide personal care, but 24% helped a loved one get dressed compared to 28% of female caregivers. 16% of male caregivers help with bathing versus 30% of females. 40% of male caregivers use paid assistance for a loved one’s personal care. About 14.5 million caregivers are males out of the 43.4% who care for an older family member. [National Alliance for Caregiving and AARP. (2009). Caregiving in the U.S.]

Early Days

In early days, families were large and lived near or with one another.  This was standard living.  As members of the family aged, the younger generation took care of the elderly.  Somewhere along the line, after the days described in The Grapes of Wrath (one of my favorite classics), the tradition of communal family living changed.  Families are spread everywhere.  Elderly parents with ten children do not have a single child of their children living in the same state.

More Recently

In the last decade or so, more and more families are returning to communal living.  This choice can be financially driven or out of loyalty and sometimes out of a feeling of obligation.  Either way, over time, the communal living transitions into caregiving.

Our elders become more fragile.  Often, mobility challenges surface and the risk for falls and broken bones increases.  Hearing and vision impairment impacts their ability to respond appropriately in an environment or in an emergency situation.  Memory loss, dementia or other cognitive conditions affect their functioning.

The Unintended Caregiver

A parent has moved in to an adult child’s home.  At first, it’s a novelty having the parent there.  Grandpa likes to help water the plants and Grandma likes to clean up the kitchen.  They both love to read to the kids or listen to them practice reciting a poem for a school project.  It’s so nice having this parental back up and break.

Small things start to change.  You notice your mom isn’t walking as quickly as she used to when you take her shopping.  Dad is having a hard time getting in and out of his favorite chair in the TV room.  At first, it’s a little worthy of teasing.  “Is there a hitch in your get-along?”  The weeks go by and the challenges are increasing and now you can see the look of frustration on their faces.  You hear the frustration in their voices.

Naturally, when you see this you slow down your own walking pace so your mom can walk comfortably.  Quickly, you jump out of your chair to your feet and are at the chairside of your dad offering an arm for stability to sit or as leverage to pull to a stand.  Congratulations!  Your generous gestures are not just polite and the proper thing to do for your elderly parent, you have become the unintended caregiver!

Caregiver Trust

The trust doesn’t end with physical assistance. One of the most rewarding aspects of being a caregiver can also be one of the most heartbreaking aspects.  In most cases, people are aware on some level of their changes.  They don’t wish to be a burden.  The feelings of frustration are just as real for them as they are for the caregiver.  The caregiver wishes they could do more.  The disabled person wishes they could do it on their own without help.  The disabled person starts sharing more personal thoughts, feelings and opinions.  The caregiver is the ultimate listener.  A beautiful friendship develops above and beyond the family relationship.

Challenges of Care Giving

Caregiving is physically challenging.  Not only are you taking care of your own laundry and that of your families, now you are doing your parent’s laundry too.  At first, its not a big deal.  Just one more load.  But that one more adds another ten plus minutes to your daily chores.  It’s one extra bed to strip, wash and make.  Another set of dishes to clean.  Don’t forget the extra trips to the doctor offices and pharmacy or the hair salon.  When you add time in your day to meet others needs, its physically tiring.

Mental exhaustion is a given with caregiving.  Because the caregiver is cognizant of the needs of the disabled person.  Our ears are on automatic pilot listening to every grunt and groan, every breath, every foot shuffle.  When this is a live-in situation, the caregiving is 24/7.   The caregiver handles the daily routines, anticipates needs, responds to needs, interprets needs, and it becomes a top priority to keep the elderly or disabled comfortable.  Any job 24/7 is mentally exhausting.  But one that you can never leave because it is with you for life, that is exhausting, period.  Everyone needs balance in life.

ARE YOU LIVING LIFE…

…WITH A FULL PLATE?

The Silent Challenge of Caregiving

The room for emotions in a caregiving scenario is quite small.  Yes, you have this beautiful special trusting bond and friendship.  Sure, you handle folding clothes all day, if and when necessary.  Your knack for organization and details make the daily routine and all the special needs manageable.  There isn’t time to be emotional over anything.  Certainly, the last thing you want is to be emotional and have your elderly/disabled person feel as if his/her being a burden has caused you distress.  You have this handled!  People look at you and wonder, “Wow, how does she do it?”.

Internalizing Situations

Caregivers are experts at compartmentalizing their feelings.  We internalize and compartmentalize our emotions as if they were Tupperware containers and lids.  We set aside our own needs to accommodate the needs of others.  If something has to give to make something else happen, the something to give was on the caregivers list of needs or wants.  This applies to EVERYTHING.  From meal planning to an afternoon entertainment adventure.  Caregivers either don’t schedule doctor appointments for themselves or they call and cancel repeatedly.  They are the worst caretakers of themselves!

They are strong in the face of adversity.  It’s on their shoulders, they feel, to keep everyone upbeat and positive about the outlook of circumstances.  “Our patience is that of a Saint, or so I have been told”, claims one caregiver (me).  Our deepest crevices in our minds hear the same question fifteen times over the course of two hours and we respond with the same answer each time.  Smiling and in a soft tone of voice, for now.

Responsibility of the Caregiver

 It’s a huge responsibility to care for another person.  Any parent knows this.  But to care for a person with extra special needs regardless of what type of needs is more daunting.  They are more fragile.  The stakes are higher.  Medical professionals seek your view of the patient as much if not more than the patient’s own reporting.  The person you are caring for is counting on you.  The family relies on you to provide primary care which frees them to attend to their own needs.  Family doesn’t worry or consider you could use help or a break or both.

Caregiver Burnout

According to WebMD, caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude — from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able — either physically or financially.

Eventually, all long-term caregivers feel burnout.  Supposedly, the average caregiver is only in this position for four years.  Yet when talking with other caregivers I find most of them have been care giving for far many more years than that.  Because once a caregiver, its hard to not give care elsewhere.  It’s a natural instinct for a caregiver to anticipate the needs of others.  They are the first to offer an arm to an elderly lady walking across the street by herself!  Their care giving days often include years caring for a family member before they ever care for a client.  And you can bet they will care for more than one family member where possible.

Time Spent Caregiving

The FCA reports findings on the time spent caregiving.  Remember, most caregiving that happens within families are unpaid positions.  No pay, no benefits – no compensation!  Not even a tax write-off!

• 4 in 10 (40%) caregivers are in high-burden situations, 18% medium burden, and 41% low burden based on the Level of Care Index (1997). Burden of care increases with hours of care provided. 92% of providers providing 21 or more hours per week are high burden versus 16% of lower hour providers. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Primary family caregivers of people with dementia report spending an average of 9 hours per day providing help to their relatives. [Fisher, G. G., Franks, M. M., Plassman, B. L., Brown, S. L., Potter, G. G., Llewellyn, D., et al. (2011). Caring for Individuals with Dementia and Cognitive Impairment, not Dementia: Findings from the Aging, Demographics, and Memory Study.]

Hours per Week

• Family caregivers spend an average of 24.4 hours per week providing care. Nearly 1 in 4 caregivers spends 41 hours or more per week providing care. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Live-in Family caregivers spend 40.5 hours per week caring for this person.
• Those caring for a spouse/partner spend 44.6 hours per week performing caregiving tasks.
• Meanwhile, those caring for a child under age 18 spend 29.7 hours per week performing caregiving tasks. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Older caregivers who are 75+ years old provide 34 hours in an average week on caregiving. Middle aged caregivers report spending 21.7 hours per week on caregiving tasks. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Family and other unpaid caregivers of people with Alzheimer’s disease and other dementias provide an estimated 21.9 hours of care per week. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

Months and Years Providing Care

• The average duration of a caregiver’s role is 4 years.
• Only 30% of caregivers provide care for less than a year.
• 24% of caregivers provide care for more than 5 years.
• 15% of caregivers provide care for 10 or more years. Higher-hour caregivers are twice as likely to have been in their caregiving role for 10 years or more. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Regardless of employment status, unpaid caregivers report that positive activities in their respective daily lives are reduced by 27.2% as a result of their caregiving responsibilities. This effect is three times greater in their personal lives than in their professional lives. [Coughlin, J. (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management.]
• Measured by duration of care, Alzheimer’s and dementia caregivers provide care on average 1-4 years more than caregivers caring for someone with an illness other than Alzheimer’s disease. They are also more likely to be providing care for five years or longer. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

Clearly, the statistics support the idea caregivers do not take time for themselves!  Setting aside family vacations, time for their own rest and relaxation.  Ignoring the most basic needs in order to provide care giving for others.

More Interesting Facts About Caregivers

“The State of Caregiving: 2015 Report” by AgingCare.com examined the demographics, finances and living situations of caregivers.

• The online survey of 3,300 family caregivers conducted in January and February found that mothers are most likely to need care; Alzheimer’s/dementia was cited by more than half of respondents as the reason the care was needed and an astounding half of family caregivers either had to use personal savings or go into significant debt to care for their loved one. Talking about finances, however, “appears to reduce the amount of cash a caregiver has to contribute to their loved one’s care,” the report said.
• When asked if they had a choice in taking on their caregiving role, half of respondents said no (That’s according to the NCA (National Alliance for Caregiving) and AARP joint report, Caregiving in the U.S. 2015).
• At least half of caregivers work while providing care, according to a 2010 report from the Center for Health Research.
• One in three caregivers reports feeling depressed, according to a 2009 MEDSURG Nursing article.
• The impact of social isolation on caregivers’ health is comparable to the biomedical risk factors of smoking, according to a 2006 article in The Gerontologist. Many caregivers report feeling they are alone. Feelings of isolation and reduced social interaction increases mortality.
• Caregivers have higher mortality and other adverse health outcomes than non-caregivers, according to a 2006 article in Psychological Bulletin.

Compensation for the Caregiver

Family Caregiver

The majority of caregiving is unpaid.  Ironically, instead of getting paid to give care, caregivers spend their own money to help cover the needs of the person for which they are giving the care.  This averages over $5,500 annually and nearly nine thousand dollars for long-distance caregivers.

Caregivers that hold other employment outside the home frequently get overwhelmed juggling the demands of both roles.  It is common for the caregiver to choose ending their employment to spend more time caregiving.  However, this adds stress because it creates additional financial hardship for families.

Professional Caregiver

Professional caregivers receive wages between $7.00 plus to $15.00.  On average, most caregivers make between $9.00-$10.00/hour.  Private pay caregivers earn more.  It’s not unusual to hear a private pay caregiver earns $20.00/hour plus.  Of course, live-in private pay professional caregivers that are non-family members are generally compensated well and their basic living expenses are included.  However, these opportunities are rare gems and require total commitment on the part of the caregiver.

Other benefits

Really?  Where?  Health care insurance?  Not usually.  Bonuses?  Rarely.  Paid vacation?  What’s vacation?  Paid vacation?  What?  Sick time?  Obviously, this varies from agency to agency.  But you can count on it not being commonplace to receive benefits above a wage.

If only our politicians would reform our taxes and include a deduction for caregiving.  After all, there are deductions for having a baby, for each minor child, and for housing a family member in a wheelchair (state deduction).  Depending on your financial tier, there is the earned income credit.  How about implementing a non-income-caregivers earned credit?  Oh wait, that’s right.  The funds for that are tied up in an elitist health care plan for our Congress!

Signs of a Stressed Caregiver

The burnt-out caregiver has any number of stresses.  Their ability to handle these stresses becomes compromised.  Caregivers experience depression and it is unfortunately said they often turn to alcohol to self-medicate.  Fatigue and anxiety help create debilitating situations for caregivers as well.  Combine just a few stressors and it is the perfect concoction for a shortened life.  It is estimated a burnt-out caregiver is likely to lose 10 years of life due to the stressors causing premature aging.

Physical Signs

• Disturbed Sleep
• Back, shoulder or neck pain, muscle tension
• Headaches
• Stomach/digestive problems (upset or acid stomach, cramps, heartburn, gas, irritable bowel syndrome, constipation, diarrhea)
• Weight fluctuation (gain or loss)
• Loss of hair
• Fatigue
• High blood pressure, irregular heart beat, palpitations
• Chest pain
• Perspiration
• Skin disorders (hives, eczema, psoriasis, tics, itching)
• Periodontal disease, jaw pain
• Reproductive problems/infertility
• Weakened immune system suppression: more colds, flu, infections
• Sexual dysfunction/lack of libido

Emotional Signs

• Anxiety
• Depression
• Moodiness/mood swings
• Butterflies
• Irritability, easily frustrated, road rage
• Memory problems and lack of concentration
• Feeling out of control
• Increased substance abuse
• Phobias
• Argumentative
• Feeling of isolation
• Job dissatisfaction

(These physical and emotional signs lists are courtesy of https://www.caregiverstress.com)

Caring for the Caregiver

Where does the caregiver go to rest?  This is the much-needed discussion that doesn’t take place.  Over time, most caregivers end up with medical maladies of their own.  This happens because they didn’t take time to make that doctor appointment.  Instead of attending to their own desires, the scales of balance are off severely and now you have an unfulfilled, depressed, inappropriately emotional shell of a human being that exists on auto pilot.  To clarify inappropriately emotional, I mean when sadness and grief strike, no tears are shed yet when the leaves turn color in the fall tears fall faster than the leaves.

There are very few resources available for caregivers.  On the positive side, the development of resources for caregivers is on the rise.  Agencies are making efforts to provide their staff with information on local caregiver support groups and internet support forums.  Medical professionals are making more efforts to explain respite care to primary caregivers.  More doctors are ordering respite care to help families.

Plea to Family and Friends

This is my request for all families and friends of caregivers, please help the caregivers you know.  I am asking you to give a little of your time.  This isn’t a request to have you come takeover.  It is not a plea for you to change your life and commit your time to one whole day every week.  This is saying, pay attention to the caregivers.  Offer to come prepare a meal, better yet, bring a meal with paper plates and plastic utensils.  If you see their mailbox is bulging, bring the mail to their door.  When the sink is full, fill the dishwasher.

Do you see signs of caregiver stress?

If yes, don’t delay – help today!!!

Of course, for those willing and able to offer more support than an hour or favor here and there, do it!  Give the caregiver an opportunity to get away for a week, or at least a weekend.  Provide your volunteer services for one day, or one afternoon, every week.  That is treasured precious time a caregiver needs.  Any caregiver needs to be able to set aside time for purposes of having at least a little balance in their lives.  That time is a luxurious hot bath and an afternoon nap in peace and quiet.

One more thing…

Start sharing your caregiver stories with your legislators and tell them you want to see caregiver credits on tax reform bills.  With over 43.5 million caregivers in our country, a person would think we could have some influence with our politicians!

Thank you to these resources:  https://www.caregiver.org/caregiver-statistics-demographics, https://www.webmd.com/healthy-aging/caregiver-recognizing-burnout#1, https://www.caring.com/questions/what-are-the-statistics-of-caregiver-stress, and https://www.caregiverstress.com/stress-management/signs-of-stress/physical-signs-caregiver-stress/.  Thank you also to Next Avenue for additional online resource information.

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