Maybe you are a paid caregiver with an agency. Maybe you are taking care of a loved one. But who is taking care of you?
Caregiver burnout is a real thing. Whether you have chosen this as your profession, or you find yourself in a situation that you are now taking care of a loved one. The following tips will help YOU as you navigate the responsibility of taking care of others.
Caregiver burnout is a state of emotional, mental or
physical exhaustion. Taking care of another person can be a very rewarding
responsibility. However, taking care of others can also be extremely
overwhelming and stressful at times. It can be particularly hard when there is
no hope that your family member will get better despite your best efforts.
If you don’t get the physical and emotional support you
need, the stress of caregiving can leave you at risk for a range of problems.
Depression, anxiety, fatigue, difficulty sleeping, overreacting to minor
issues, new or worsening health problems, and many more.
A Few Tips To Help
Practice acceptance.
Sometimes we spend a lot of energy dwelling on things we
cannot change. Sometimes there are no clear answers. We must accept that we are
doing the best that we can. Try to avoid the emotional trap of feeling sorry
for yourself or searching for someone to blame.
Focus on things that you control.
You cannot control time, or the illness your loved one is suffering from. You can control how you react to situations, and you can make the most out of the time that you have. Educate yourself. The more you know about the illness, the more effective you will be in caring for the person with the illness.
Embrace your choice.
Either you are the caregiver or you have found yourself
hiring a caregiver. Embrace it. Focus on all the positive reasons behind that
choice.
Look for a silver lining.
Think about how care giving makes you feel. Do you feel like you have HELPED someone? Has it brought you closer to the person you are caring for? Do you know that your loved one is getting the help they deserve?
Don’t let being a caregiver take over your life.
You need to make time for you! Invest some time in a favorite hobby, your family, church, or simply some time for YOU!
Find a way to pamper yourself.
Light some candles and take a bath. Get a manicure. Go for a
walk. Read a book. Buy yourself some flowers. Do anything that makes you feel
special and relaxed!
Take care of your personal health.
Be sure to keep on top of your own doctor visits and checkups. Sleep is important too! Aim for 8 hours of sleep per day.
Exercise.
Exercise has been a proven method in relieving stress. Aim
for a minimum of 30 minutes on most days. When you do this regularly you will
find it boosts your energy level as well.
Eat well.
Fresh fruits, fresh veggies, lean proteins and healthy fats
are the best things to eat. These types of food will help keep steady energy
throughout the day.
Talk to a family member or friend.
Make sure you have someone you can vent to. Everyone needs a
listening ear, or a shoulder to cry on.
ASK FOR HELP!
When things get overwhelming, you need to ask for help. Don’t
try to do everything alone. No one can accomplish that. Look into respite care
from family, friends, or even an agency. You deserve a break too!
There are lots of different support groups out there too. Some are local, some are online. Support groups are important. You will see that you are not alone. You may even find someone who is going through a very similar situation. They may turn into your “person” that you talk to when you need shoulder to cry on.
What you do makes a difference. You are making someone else’s life a little easier. There are not enough “thank you’s” in the world to show the appreciation you deserve.
A diagnosis of Alzheimer’s disease can be difficult, but getting accurate information and support can help you know what to expect and what to do next. Use this checklist to get started.
Learn about Alzheimer’s disease
Being informed will help you know what to expect as the disease progresses. Here are some resources:
Alzheimer’s Disease Education and Referral (ADEAR) Center: 1-800-438-4380; nia.nih.gov/alzheimers
Prepare or update your will, living will, healthcare power of attorney, and financial power of To find a lawyer, contact your local bar association or the National Academy of Elder Law Attorneys: www.naela.org
Learn about care you may need in the future and how to pay for it: longtermcare.gov
Explore getting help to pay for medicines, housing, transportation, and Visit the National Council on Aging: www.benefitscheckup.org
Get help as needed with day-to-day tasks
Use simple memory aids like a notepad or sticky notes to jot down reminders, a pillbox to keep medications organized, and a calendar to record appointments.
Ask family members or friends or find local services to help with routine tasks, such as cooking, paying bills, transportation, or shopping.
Consider using technology solutions for medication management, safety (e.g., emergency response, door alarms), and other care.
Talk with your doctor if you become confused, get lost, or need lots of help with directions, or if others worry about your driving.
Get a driving evaluation. Ask your doctor for names of driving evaluators, or visit the American Occupational Therapy Association: http://myaota.aota.org/driver_search
Be active! Getting exercise helps people with Alzheimer’s feel better and helps keep their muscles, joints, and heart in good shape. For tips, see nia.nih.gov/Go4Life.
Continue to enjoy visits with family and friends, hobbies, and outings.
If you live alone
Identify someone who can visit you regularly and be an emergency contact.
If you are at risk of falling, order an emergency response system. A special pendant or bracelet lets you summon help if you fall and can’t reach the the phone.
Consider working with an occupational therapist. This person can teach you ways to stay independent. Ask your doctor for more information.
Stick with familiar places, people, and Simplify Your Life.
If you are working
If you have problems performing your job, consider reducing your hours or switching to a less demanding position.
Consult your employer’s HR department or employee assistance program about family leave, disability benefits, and other employee benefits.
Find out if you qualify for Social Security disability benefits through “compassionate allowances.” Visit socialsecurity.gov/compassionateallowances or call 1-800-722-1213.
NIH, National Institute on Aging, Alzheimer’s Disease Education and Referral Center, April 2016
Locally, if you have questions, concerns, a need for help, contact PA HOME CARE of Lancaster at 717-464-2006 or by email to PAHC@pa-homecare.com. We’ll be glad to help.
Someone with Alzheimer’s disease may start rummaging or searching through cabinets, drawers, closets, the refrigerator, and other places where things are stored. He or she also may hide items around the house. This behavior can be annoying or even dangerous for the caregiver or family members. If you get angry, try to remember that this behavior is part of the disease.
In some cases, there might be a logical reason for this behavior. For instance, the person may be looking for something specific, although he or she may not be able to tell you what it is. He or she may be hungry or bored. Try to understand what is causing the behavior so you can fit your response to the cause.
Rummaging—withSafety
You can take steps that allow the person with Alzheimer’s to rummage while protecting your belongings and keeping the person safe. Try these tips:
Lock up dangerous or toxic products, or place them out of the person’s sight and reach.
Remove spoiled food from the refrigerator and cabinets. Someone with Alzheimer’s may look for snacks but lack the judgment or sense of taste to stay away from spoiled foods.
Remove valuable items that could be misplaced or hidden by the person, like important papers, checkbooks, charge cards, jewelry, and keys.
People with Alzheimer’s often hide, lose, or throw away mail. If this is a serious problem, consider getting a post office box. If you have a yard with a fence and a locked gate, place your mailbox outside the gate.
HowtoHelp
You also can create a special place where the person with Alzheimer’s can rummage freely or sort things. This could be a chest of drawers, a bag of objects, or a basket of clothing to fold or unfold.
Give him or her a personal box, chest, or cupboard to store special objects. You may have to remind the person where to find his or her personal storage place.
Keep the person with Alzheimer’s from going into unused rooms. This limits his or her rummaging through and hiding things.
Search the house to learn where the person often hides things. Once you find these places, check them often, out of sight of the person.
Keep all trash cans covered or out of sight. People with Alzheimer’s may not remember the purpose of the container or may rummage through it.
Check trash containers before you empty them, in case something has been hidden there or thrown away by accident.
Remember, this behavior is part of the disease and no one is at fault for it. Learn how to best manage and cope and you’ll all be happier for it.
For more information about Alzheimer’s and related dementias, call 1-800-438-4380 to reach the National Institute on Aging’s ADEAR Center. (Alzheimer’s Dementias Education And Referral) or go to www.nia.nih.gov/alzheimers
Feel free to contact PA HOME CARE with any questions or for help at home. We’re here to make your life easier and we’re committed to helping seniors age in place, safely and securely, in the comfort of their own homes.
Though the following deals specifically with people living with Alzheimer’s, these are good tips to follow for anyone with disrupted sleep patterns.
Alzheimer’s disease often affects a person’s sleeping habits. It may be hard to get the person to go to bed and stay there. Someone with Alzheimer’s may sleep a lot or not enough, and may wake up many times during the night.
Here are some tips that may help caregivers manage sleep problems in people with Alzheimer’s disease:
Help the person get exercise each day, limit naps, and make sure the person gets enough rest at night. Being overly tired can increase late-afternoon and nighttime restlessness.
Plan activities that use more energy early in the day. For example, try bathing in the morning or having the largest family meal in the middle of the day.
Set a quiet, peaceful mood in the evening to help the person relax. Keep the lights low, try to reduce the noise levels, and play soothing music if he or she enjoys it.
Try to have the person go to bed at the same time each night. A bedtime routine, such as reading out loud, also may help.
Limit caffeine.
Use nightlights in the bedroom, hall, and bathroom.
Learn more about sleep and Alzheimer’s disease on the NIH website.
Have you ever become frustrated with your loved one living with dementia because you have tried everything you know to do and still they are angry or sad or scared? Did you know that if certain needs are left unattended, your loved one’s dementia will present itself in seemingly unconnected ways?
If Grandma is acting out in an angry manner, it’s possible that she may be hungry or thirsty and she is not able to verbalize her physical wants to you.
If Grandpa just wants to sleep in his chair and you know he had a good night’s rest, the answer may be that he is feeling sad and he cannot put into words what his true feelings are all about. Over-excitement may lead to the same result, you loved one may suddenly seem sad for no apparent reason.
A sudden bout of loneliness from the senior with dementia may actually have more to do with an unmet need to use a restroom, or an “accident” that they are not able to explain to you in words.
The elderly patient living with dementia may seem scared, more than confused. A cause for this can be attributed to this person feeling too hot or too cold and just have no ability to verbalize exactly what it is they are needing at this particular time.
Part of the difficulty in helping your loved one live with dementia is learning a new language, their language of emotional cues. After having eliminated (to the best of your ability) all of the obvious physical and environmental possibilities, it’s very likely that there is pain involved.
Pain can be radiating from any number of places; stomach ache, bowel or urinary issues, joints, head ache, old injuries, heart or gastrointestinal issues, discomfort in skin creases or folds, uncomfortable sitting or lying down positions, the list can seem endless.
Try your best to get at the nature of the pain and make your loved one comfortable. When all else has failed, it may be time for a trip to the doctor or hospital.
Taking care of someone living with dementia requires a certain amount of “sleuthing” on the part of the caregiver to meet and address all of the often unspoken needs of the elder loved one. The benefits are worth it when you find those fleeting moments of lucidity and you are there to “see” him or her again, even briefly.
Recently much has been said about “sitting being the new smoking” when it comes to health risks. For our senior population another risk has been well known in anecdotal form, but much less well documented. That is the inherent risk associated with social isolation as it relates to chronic depression. According to the National Institute on Health, frequent feelings of loneliness are linked to higher rates of infection, cognitive decline, cardiovascular disease, depression, morbidity and mortality. This risk is magnified among our older population as they are facing retirement and a perceived loss of self as well as health limitations and possibly disabilities limiting their mobility and ability to do all of the things they want to do.
It doesn’t have to be this way. Older adults, in particular, have shown an ability to thrive with a minimal level of social connectedness. Even a small social network, church activities, volunteering, visits with family, etc. can bring a level of satisfaction much greater than the lack of same can lead to health issues, particularly depression. However, this is not a “one size fits all” resolution. Some folks are happy with little outside contact while others crave more activity. This is the difference between actual social disconnectedness and perceived isolation. One elder who appears to be socially disconnected may, in fact, thrive on a certain level of contented solitude. Another apparently active senior may feel unsupported and not intimate in their relationships and actually perceive themself as isolated. Ask your older loved one the following questions; “How often do you feel that you lack companionship?” “How often do you feel left out?” and “How often do you feel isolated from others?” Their answers will be very telling.
So what do we do? First and foremost, you must know the senior adult that you are concerned about. Not just know who they are and what their physical needs are, but know them as a person. What do they enjoy, who do they enjoy time with, what would a perfect day look like to this individual? Now, how do we get them there? What resources are available to the elder and their family? What is reasonable and sustainable? For instance, if regular family time is what your senior craves, is it possible to have a standing date every week, every month, whatever works for you and your family? If church and activities revolving around church is enjoyable, does the church have transportation available or any kind of outreach program for those at home? If regular exercise is what’s most enjoyable, a walk can do wonders and can be done with a “buddy” for companionship and safety. Senior centers are often a viable option and can best be approached on a temporary basis with enough time allowed for the elder to build friendships and enjoy the socialization. Following are a few more suggestions:
* Courses in the following, often leading to clubs or informal gatherings to do same; Cooking, Crafting, Computer/Internet, Bird-Watching, Gardening, or any other new activity.
* Volunteering; opportunities abound across many areas of need; hospitals, churches, schools, public service organizations, also check with your local United Way.
* Exercise programs geared specifically towards the older adult; check with your local YMCA, Office of Aging, or Senior Centers, as well as Health Clubs in your area.
The possibilities are really endless if approached from a position of what can we do, instead of what the senior is no longer able to do. At PA HOME CARE we are happy to help in any way that we can. We’re available by the hour or by the day and anything in between.
Great caregivers do whatever is needed for those who have a need for that “extra set of hands around the house”. Caregivers keep a home running as normally as possible and make it possible for the client to stay at home in the place they love, instead of moving. Following you will find information on the services that we offer; we hope that you will find the information to be useful for that extra set of hands around the house. We are members of the Lancaster Chamber of Commerce, as well as being contract providers with the Lancaster County Office of Aging. Our owners, Shawn and Kathy Spence, are active in the community both thru service organizations like Rotary International and their church, Grace Community. You can learn more about our staff and services at our website at www.PA-HomeCare.com. Our professional staff is insured and bonded and undergoes a thorough background review. And just as importantly, “With Hearts and Hands, We Care”, and you can too.
Typical Duties Include:
Grooming assistance – Hair care, shaving, oral care and skin care.
Bathing assistance – Shower assistance, tub bath, bed bath, basin bath.
Dressing assistance – Assisting with dressing and undressing client, clothing selection.
Toileting assistance – Bathroom, bedside commode, urinal, bedpan or diapers.
Ambulation assistance – Use of walker, cane, gait belt or crutches.
Transferring – From bed, wheelchair, low chair, use of lift, turning client in bed.
Medication reminders – Not dosing or administering of meds.
Cleaning for client safety and comfort – Kitchen, bedroom, bathroom, laundry, changing sheets, and light housework of client’s living spaces.
Meals – Shopping for food, cooking food, following special diets, serving food.
Emotional support – Companionship, teaching, having conversations, playing cards, reading.
Transportation – Errands, medical appointments.
Shopping – Groceries, clothing, medication pick-ups.
Communication – Coordinating patient care with other members of health care team. Reporting changes in patient condition to family, agency and medical team. Keep records of patient care.
Working Conditions:
Caregivers work in the clients homes. They must be able to bend down, lift, and do other things associated with cleaning, cooking and caregiving. They must also be able to handle patient suffering that might be due to physical or emotional problems at home. Since most clients can not be left alone, caregivers will be required to take a meal break as needed, and not leave the clients home during the break.
Training Requirements:
Formal training is not required to start working as a non-medical in-home caregiver. It is helpful (though not necessary) to complete specialized training to obtain a Home Health Aide certificate or Certified Nursing Assistant. Training will cover basic nutrition, meal planning and preparation, home cleaning tasks, techniques for bathing, turning and transferring the client. Skills assessment will be performed by a Registered Nurse and attendance at ongoing, regularly scheduled training is mandatory.
Other Requirements:
You must have a valid Pennsylvania Driver’s License and access to a reliable car, pass a comprehensive set of employment background checks, be a legal resident of the United States or have valid work VISA, be able to read and write English, agree to PPD testing (the results of which will be kept on file) and have sympathy for and interest in caring for the elderly and sick at home. Your compassionate heart for caring and helping is invaluable and absolutely necessary to be successful as a PA HOME CARE caregiver. “With Hearts and Hands, We Care” and we hope you do too.
PA HOME CARE specializes in affordable, personal, non-medical assistance to help make every-day life easier. We sincerely hope to be of help to a wide variety of those in need; from new moms/families, to those in recuperative care, to elders facing the challenges of daily life. Our goal is to keep our clients happy and healthy in the comfort of their own homes. We are available by the hour, for the day, or long-term, round-the-clock for as long as we are needed. PA HOME CARE of Lancaster has over a decade of experience in providing care throughout Lancaster County. We’re confident we can help, with the valued assistance of our Quality Care Assistants, our caregivers. Won’t you join us?
If there are further questions we can answer for you, please feel free to call us at 717-464-2006 or email us at PAHC@PA-HomeCare.com, or visit our website atwww.PA-HomeCare.com (look for the “contact us” tab and select “employment”). We look forward to meeting you.
Many will grow old without family to look after them.
Photo Credit: Thinkstock
The last piece of real estate Pam and Bruce Boyer purchased together was more than 20 years ago: adjoining plots in the cemetery across the street from their home in historic Bethlehem, Pa.
“We chose a place we really like. We walk there – it’s like a park in London,” says Pam Boyer, 68, a retired magazine researcher whose husband is a freelance writer. “We got it taken care of early before it seemed morbid – or too homey,” she adds with a laugh.
‘Elder Orphans’
It wasn’t the only accommodation the Boyers made to the fact that they are childless, a circumstance an estimated one in five boomers find themselves in as they age.
One study predicts that about a quarter of boomers may become “elder orphans.” That’s a newly coined term for people who reach old age with no family or friends left, like the 81-year-old North Carolina man who made the news in May when he called 911 for food because he had no one else to turn to.
Fewer Caregivers
Family members provide about 70 percent of long-term care services, according to a survey by the American College of Financial Services. Not only are more boomers childless, those who do have children have fewer than the previous generation. Trendsetters from the start, the boomers have spawned a new phenomenon: caregiver shortage.
As of 2010, there were more than seven family caregivers for every person 80 and over. By 2030, estimates say, there will only be four and by 2050 there will be fewer than three.
The key thing is choosing someone who will enforce the decisions that you’ve already made.
— Bert Rahl, Benjamin Rose Institute on Aging
That raises the question: Who will take care of the childless boomers when they’re old?
Avoiding the Serious Questions
What alarms many experts is that it’s not the boomers who are asking that question.
“I’d say of every four people I meet, three have not made any decisions at all about their health care when they age,” says Bert Rahl, a licensed social worker and director of mental health services at the Benjamin Rose Institute on Aging in Cleveland, Ohio.
Understanding the Truth
The Boyers chose to be proactive. What made it easier: In light of their circumstances, they’d given it a lot of thought.
They knew when they married more than 30 years ago that they were never going to have children. Pam Boyer is an only child who cared for her grandmother and both her parents — her father had Parkinson’s disease, her mother, Alzheimer’s — in their later years.
And neither of them was squeamish about talking about death — even their own.
Take Charge of Your Life
So not only did the Boyers pre-plan their burial, they downloaded documents from the Internet that allowed them to create an advanced directive (a living will that spells out your wishes for end-of-life care) as well as durable power of attorney (POA) so a trusted friend could handle both health care and financial decisions for them when they couldn’t.
(Unlike an ordinary POA, a durable POA stays in effect if you’re incapacitated. The medical version of the POA is called a durable POA for health care.)
They also bought long-term care insurance to help cover expenses if they develop chronic illnesses that require treatment over a long period of time. Premiums for this kind of insurance are high — they can range, on average, from as low as $1,700 to more than $5,000 a year — but they offer the couple peace of mind that a catastrophic illness won’t bankrupt them.
Preventing Falls
They also did some preventive remodeling. They added grab bars to their bathtub and moved their washer and dryer from the basement to the main floor of their house to reduce their risk of falls. Falling is the No. 1 cause of hospitalization for older adults in the United States and a leading reason those 75 and older wind up in long-term care.
“Making your home fall-resistant is one of the best things you can do. Your injury potential goes way down,” says Louis Tenenbaum, a former carpenter and contractor who founded the Aging in Place Institute. The organization advocates for housing modifications to meet the needs of seniors who want to stay in their own homes as long as possible.
Every step the Boyers have taken to protect themselves in old age is a wise move even if you have children who say they’re ready and willing to be your caregivers, says Dr. Bruce Chernof, President and Chief Executive Officer of California-based SCAN Foundation, a nonprofit dedicated to improving the range of health care for seniors.
Finding Strong Supporters
Chernof, who himself is a married boomer with no children, says “family” needs to be defined broadly.
“It’s not just children. We all should be thinking about how we want to live our lives with dignity and independence and we should be building a circle of friends and family around us to help us realize that plan,” Chernof notes.
The key thing is choosing someone who will enforce the decisions you’ve already made, Rahl says. “It’s very important to communicate ahead of time what your wants and wishes are, and choose someone who will honor your wishes, not impose their own personal values,” he adds.
Draft Documents, Get Insurance
Having that “circle of support” isn’t enough without the conversation about what you want done when something happens to you. “Seventy percent of those over 65 are going to need long-term service, including help around the home, dressing, transportation and more,” Chernof says. “Not only should you be talking about what you want, it’s incumbent on you to have tools in place — like durable power of attorney and an advanced directive document and long-term care insurance if you can afford it — to support your circle of support when you hit a speed bump.”
Having those conversations isn’t easy.
Alice Alexander, 57, admits she’s one of those “typical people who have their head in the sand” about growing older.
But she took one step that she knows is in the right direction, though she did it for other reasons: She and her husband of three years recently moved into a co-housing condo community in downtown Durham, N.C. Like the Boyers, they’re childless.
Being There for Each Other
“I wanted to live in a community and with co-housing, community is there when you want it,” says Alexander, Executive Director of the Co-Housing Association. “I wanted one of those neighborhoods where you know your neighbors, where you remember each other’s birthdays and feel comfortable knocking on the door when you need help but you can always close the door. I think together as a group we’ll all find the courage to have the conversation, because we really do need to think about this.”
Alexander’s multigenerational co-housing neighbors — the Durham Central Park Co-Housing Community — haven’t set up a legal covenant spelling out how neighborly they’re going to be. But they have agreed that they want to be there for one another.
The plan was tested during the month of move-in, when one of their single neighbors broke her arm and couldn’t care for herself.
Rather than see her go to rehab, “We scheduled visiting with her, bringing her food, and some people volunteered to help her bathe,” Alexander says.
Revisit the Decisions
While setting plans in place for the potential and the inevitable are a good idea, they’ll sometimes require some tinkering. Over the last couple of years, the Boyers realized that asking a close friend to be their support was probably not the best idea.
“Unfortunately, he’s our age, which is not going to be a practical solution,” Pam says. “We’re going to ask an attorney to take over for us.”
Her advice: “Talk about it while you’re still feeling good and revisit it from time to time. It’s not once and done.”
To see the original article, or to search for more articles like this, follow the link below to www.nextavenue.org:
“This film delves into music’s ability to combat memory loss and help to restore a deep sense of self to those who are going through a dementia diagnosis.” from Olivia Maturano, Alzheimer’s Association
“Dan Cohen, founder of the nonprofit organization Music & Memory, fights against a broken healthcare system to demonstrate music’s ability to combat memory loss and restore a deep sense of self to those suffering from it.” from http://www.imdb.com/title/tt2593392/
Emily Gurnon is Senior Content Editor covering health for Next Avenue. Follow her on Twitter@EmilyGurnon.
I was fortunate to be able to attend the American Society on Aging’s massive Aging in America 2015 conference in Chicago, Ill. last month. One of the most interesting and well-researched presentations I heard was by Lynn Friss Feinberg, senior strategic policy advisor for the AARP Public Policy Institute.
Feinberg has done policy analysis and applied research on family caregiving and long-term services and supports for more than three decades, according to AARP. The following are excerpts from her talk. She began by discussing how caregiving is different today than it was in the past.
Lynn Friss Feinberg:
There is greater complexity today in the caregiving role. Older people have multiple chronic conditions. Families serve as both care coordinators and service providers. They serve as social workers and nurses, without adequate training — many feeling very scared about their role because they don’t know what they’re supposed to be doing to do it right.
People are discharged quicker and sicker from hospitals today, so nearly one-half of family caregivers of adults are carrying out health-related tasks in the home. This is a huge shift from the old days.
So what are these tasks that are so scary?
Managing complex medication schedules is one. Imagine if you are working at your job, but your grandmother came home from the hospital with prescriptions for 16 different medications that had to be taken. And you can’t afford to hire help in the home, so you have to run home periodically during the day to administer those medications.
There is also bandaging and wound care, tube feedings, managing catheters, giving injections and operating medical equipment in the home. As Susan Reinhardt from AARP Public Policy Institute has said, these are tasks that would make nursing students tremble. It’s really scary, and we are not trained to do that.
More WomenWorking and Caregiving
There are more women in the workplace, especially older women, and women today define the provider role as not only taking care of their families but also supporting their families economically. Among 55- to 64-year-olds, women’s labor force participation increased from 41 percent in 1980 to 59 percent in 2012 and is projected to reach 67 percent by 2020.
Another difference is the changing composition of families and households. There is more long-distance caregiving. When I grew up, my grandparents lived right down the street from me. My granddaughters live in California, I live in Maryland; things are not the same. There is increasing diversity, delayed marriage and childbirth, high rates of divorce. The divorce rate of the population 50 and older doubled between 1990 and 2010.
Fewer Adult Children to Help
In addition, there are fewer adult children. The percent of those 85 and older with no adult children is projected to increase from 16 percent today to 21 percent by 2040. So even if you have one of those three great daughters that we all wish for, there’s no guarantee that they’re going to be there when you’re in old-old age.
So who will be caring for whom?
On Changing the Language of Caregiving
If I can do anything in my career now, I would like to change our terminology.
We should definitely retire the term “informal caregiver” from our vocabulary in referring to the care of frail older people by family caregivers and friends. Because family members are traditionally not paid for the help they provide to their loved one, they’re sometimes described as informal. In contrast, health care professionals and social service professionals, as well as direct care workers like home care aides, are generally described as formal caregivers because they’re paid for their services and they’ve also received training.
But the jargon of “informal” devalues the complexity of what family caregivers are doing today — suggesting that the tasks the families undertake are casual, relaxed, easygoing and simple.
Now let me ask you: Is there anything simple and easygoing about providing care to a grandparent with Alzheimer’s disease who has escalating needs and more costly care? Anything casual about an adult daughter having to take her father to use the toilet? The term “informal” disrespects family caregivers by creating an impression that the efforts of family members and friends play only a minor role in long term services and supports and health care.
In reality, it is families that do almost all the coordination, and provide that care, too.
America’s Care Gap
The U.S. is facing a care gap. The future looks unlike the past. We are facing rising demand as our population ages and shrinking families to provide supportive services.
No longer do we have what my grandparents and great grandparents have, which was seven, eight, nine siblings in their families to share the care. Although the family has historically been the major provider of care for older people with long-term services and support needs, the number of potential family caregivers has begun to inch downward.
Today, the caregiver support ratio has begun what will be a steep decline. We’re at the apex right now, then it’s going to go drastically down. In 2010, the support ratio was at its highest; there were 7.2 potential family caregivers for every person over the age of 80. But by now, in 2015, it has started the decline to 6.8 potential family caregivers for every person in the high-risk years of 80 and over.
By 2030, in just 15 years, as the boomers transition from family caregivers themselves into old age, the ratio is projected to decline even more sharply to 4 to 1. And by 2050 when all the boomers are in old age and will need help themselves, it will fall to less than 3 to 1.
These are really worrisome statistics, which brings me to my last point.
Facing Caregiving With Urgency
We need to treat family caregiving with new urgency and make it a priority on the national health care and long-term care agenda, in workplaces too. Family caregiving is one of the least appreciated, but most important, issues our country faces as we all age. But family caregiving is typically viewed as a private family issue and the responsibility of women in particular, and largely overlooked in public policy.
With the looming care gap, it’s time to ask this question: Are we asking families and close friends to do too much?
In my view, the debate should focus less on whether family or the public sector should be responsible for providing care and we should focus more on how family caregivers can be better recognized and supported if they choose to be a caregiver to keep them from burning out. And we should ensure that the choice that a family member makes does not have negative consequences for the individual or the family.
The current heavy reliance on family and friends as I’ve just described is just unsustainable in long-term care.
I want to leave with a quote from a colleague, Jonathan Rauch, who wrote an article in The Atlantic magazine called “Letting Go of My Father” in April 2010. He wrote that what we need “is for our nameless problem to be plucked out of the realm of the personal and brought into full public view, where help can find us.”
Postscript from Kathy Spence of PA HOME CARE of Lancaster:
We have found that most successful plans of care that are established for people in need in their own homes involves a “jigsaw puzzle” of supports. Some of those supports are comprised of family and friends, we call them the family caregivers. Some of those supports are a blending of various non-medical and medical personnel, we call them the professional caregivers. Needs are broken down and tasked out to various members of this support team so that the overall care for the loved one is not too overwhelming for any single individual. However, as with any plan, foreseeing all of the complexities and details in putting together a workable solution can be, in and of itself, daunting. We encourage anybody in this situation to not be silent. Ask for help and guidance. Identify what is easily and conscientiously handed over to someone else to handle for you. You may want to continue going along to doctor’s appointments, so maybe someone else can do the laundry. You may need a medical professional to handle wound care, so maybe a non-medical caregiver can handle bathing and dressing. “Pick the low hanging fruit” (tasks easily identifiable and assigned in their entirety) and move on to the myriad other caregiving responsibilities that all come together to provide a safe and happy season of life, in your loved one’s own home.
