The Family Caregiver Council was born from a desire to look at these issues in a collaborative, meaningful way, providing support and resources so caregivers won’t become overwhelmed. Comprised of leaders from 13 national family caregiver organizations and other experts, we’ve combined our resources to support family caregivers more effectively than any of us can do alone.
What do you consider the biggest health issue in our country? Cancer? Diabetes? Heart disease? Obesity? Smoking? If you’re
Dr. Vivek Murthy, the Surgeon General of the United States, it is social isolation. Being isolated often leads to loneliness—another
serious condition for aging parents.
One scientific journal reports that 43 percent of elders are lonely. Fortunately, there is a movement afoot by physicians,
researchers, geriatric specialists, social service professionals and other enlightened folks to get the word out—and
offer ways to mitigate isolation and loneliness. The AARP Foundation has launched a campaign called Connect2Affect and
the United Kingdom has Campaign to End Loneliness.
Clearly, you can be socially isolated but not lonely or lonely even though you’re surrounded by others. But, typically the
two go hand in hand.
It is that all-alone-in-the-world feeling that triggers loneliness. Of course, people of all ages get lonely, but when you’re
older—like our aging parents—it can have grave consequences.
Literally. Studies (not “study”) show that older people who are isolated and lonely tend to die earlier than those who have
rich social interactions and connections. One 2015 Brigham Young University study of 3.5 million people over 35 years
found that loneliness resulted in a 26 to 32 percent rise in premature death. And here’s the kicker: scientists consider loneliness is as lethal as smoking 15 cigarettes a day.
Not scary enough? Social isolation, researchers believe, may be linked to higher risks of stroke, heart disease, dementia,
hospital readmission and falls. Let’s put this another way: when you stay socially engaged, it can slow cognitive issues
and boost happiness.
What to Say Instead
Reasons Our Parents Are Lonely
The world shrinks when you get older. In the early years, there are little kids, family and/or work. No time to even realize
you’re lonely! Then the children, if you have them, take off. They may have their own children, with the whole crew living
There are more reasons why people wind up alone and lonely:
Retirement. No longer in an office or at a job, there are often fewer daily interactions with others.
Friends. People with whom you have shared meals and memories—your life–may move away to be near
their grandchildren, dodge cold weather, live in a senior community or have a new adventure. Others get ill.
That robust social circle can peter out.
The same is true if your aging parents decide to move and have to start all over without a strong support system. It’s harder
to meet new people, and with ageism, some younger people aren’t interested.
Different Kinds of Challenges. These may be mobility (too hard to get out), hearing loss or cognitive decline
such as Alzheimer’s. When you’re no longer driving, transportation options may be inaccessible, unaffordable or too
overwhelming to figure out.
Spouses. They may get physically sick—and the relationship may shift to a caregiver role that is isolating.
Or, with increased longevity, some spouses decide they’d rather be single than stay with their no-longer soul mate
for another 20 or 30 years. (Long marriages that go bust are known as “grey divorce.”)
Housing/Living Arrangements. One out of three older adults enter old age widowed, divorced or never
married. Thirty-five percent of women age 65+ who live alone are widows, with 32% of women age 65+ living
solo. By age 75+, 46% of women live by themselves. Keeping social connections can be even harder for single
Finances. When you’re on a limited budget, you may not be able to move or change your situation.
That house that is in a peaceful rural setting or has charm but way too many stairs might have been perfect
when Mom was younger, but lacks what really matters now: people nearby, services and amenities.
How to Reduce Loneliness and Social Isolation
The good news is that loneliness does not have to be permanent.
Try these strategies:
Make plans, and create opportunities, to be with other people. Does your parent’s community have special
programs or offer ways to stay connected? Front Porch, for instance, uses technology in its senior communities called It’s Never 2 Late so older adults can receive support, including engagement and learning online. Elders can also
have rich online experiences (video chat, reminders, messaging, picture sharing) with the GrandPad tablet or Independa
Rethink housing. How can your aging parent have regular contact and stimulation? Can Move move? Can her
friend or someone else move in to split the bills and share a meal?
Besides shared housing, many older adults find co-housing appealing. (You have your own place but also share common
space where you can enjoy some meals and activities together and have daily informal interaction. Communities can
be all older adults or multigenerational.) Some elders are moving to communities that have a social mission, such
as helping former foster kids and their adoptive parents.
Other alternatives include living in a naturally occurring retirement community (NORC), where there are enough seniors
to offer services (medical help, transportation) and social programs.
Participate in intergenerational activities, whether it’s improving kids’ reading skills, being part of
a multi-age chorus, or sharing your personal story. The national organization Generations United has a directory
of intergenerational programs around the country. The benefits for seniors include having a sense of purpose, sharing
their knowledge, providing love, support and attention (and receiving it in return).
Use technology to stay connected
with family and the larger world. These include:
Virtual senior centers (VSC) allow homebound elders to participate in classes, events and activities with others
even if they can’t be there in person.
Online forums let seniors “talk” to others about an interest (books, gardening, current events, meditation, music)
or private issue (a disease, caregiving for a spouse, difficult daughter-in-law, grandparenting, forgiveness
Free, online classes teach new subjects and can be stimulating.
Google Home or Amazon’s Alexa answers questions you ask it (“Is it going to rain today?” “Who was the third president
of the United States?” “What time is it in London?”), play music you like, and even order take-out food.
Facetime, Skype, email and photo sharing can keep your parent connected to family and old friends. And, that
old favorite – call. Voice is still important.
Virtual reality, still in its infancy, will let frail seniors feel that they are at a grandson’s college graduation,
say, or traveling to an exotic place, by donning 3-D goggles.
Research Resources. Besides the ones mentioned above, try your local Area Agency on Aging, the federal Eldercare
Locator, your city or town and nearby senior center.
Technology for family caregivers can be a godsend or it can be overwhelming and unhelpful. It can give siblings updates,
coordinate appointments and care, make sure Mom takes her medicine and ensure that she’s safe. On the other hand, family
caregiver technology can be overly complicated and pricey. And, while customer support can be terrific, it can also be
Gadgets abound like Personal Emergency Response Systems (PERS) that let Dad get help 24/7, wireless sensors that track movement
and alert you if something is out of the ordinary, or apps and websites that organize care and communication. There are
also plenty of choices for safety technology.
But how do family caregivers know what to buy? Here’s what to keep in mind:
Does it serve your goal? It may look great, the price might be right, but is it what you need? If you want
to be able to check on Mom anytime from anywhere, would an app on your iPhone do the trick? Can family members also
log into a special website? If you want to make sure Dad does not open the door and wander outside, does the gadget
have GPS that signals you or someone else if he does? Or, are you just supposed to hope for the best? Tech can also
make sure prescriptions are refilled and offer an efficient way to tell when medication has expired so there’s no
If your parent has dementia and needs to take medicine at a certain time, does the device notify them when it’s
time and automatically unlock the pills? Will it let you know if they forget it altogether? (Medicine is a big issue:
Not taking it or taking it at the wrong time or the wrong way can lead to poor health and hospitalization.)
You don’t need a product with all the bells and whistles. It needs to just have what you need. Ask yourself which
of your needs are most important.
How easy is it to use? The technology can meet your goal but might not be user-friendly. Does it sync across
different platforms (smartphone, tablet, computer)? If you want it to talk and give you information (hark, Siri,
Alexa and Google Home), does it? Is it no problem to input information or requests into a shared family website or
is it cumbersome? What you get should simplify your life, not frustrate you.
Is there good customer support? If something doesn’t work or you don’t know how to use it, you need help
fast. Is there a call center, a special number to call or live online chat? Extra points: if it’s a call center,
does the company know the caller and have notes from previous interactions or a personal profile? If you need to,
can you get training about the product, follow up or get instructions via email, video or a website.
Find out what their policy is for returning the gadget. If there’s a subscription service, know what the terms are
and if you can cancel.
How long has the product been around? It might be new and suit your purposes, but in general, there’s no
advantage to getting the latest, coolest gadget if the company isn’t going to be in business long. And, the coolest
isn’t always the simplest.
What do others with similar needs use? Do friends have a product that saves them time, does a task or offers peace of mind? If you have a specific
purpose, do some research. Go online and see what is out there. Visit company sites. Check out discussions, caregiver
forums and articles on family caregiver technology.
Ask for recommendations from your local senior center or TArea Agency on Aging, check Consumer Reports and the Better Business Bureau for complaints.
Good news! In the next couple of years, there will be even more technology choices for caregivers. And then, as
now, you will be discerning because you will know the best questions to ask.
Take it from a former caregiver to my father, my mother and mother-in-law: caring for a parent can be depressing. Mom and
Dad were once vital and maybe your rock or the family glue. But now you may feel powerless and hopeless. You can’t fix
their dementia, illness or the inevitable cycle of life. Of course you love them, but you’re tired. It seems as if caregiving
will never end. Taking care of more than one parent or an in-law and a parent in different places can put you over the
edge. If you have had a difficult, or zero, relationship with them, it can feel untenable.
What can you do? I’ve thought about what I did and the “should haves.” Here’s what worked for me:
On a Saturday, when I travelled to Connecticut from Massachusetts to see my 91-year-old mother, and then drove another
hour to be with my 94 year-old mother-in-law, I would return to Boston and crawl into bed—even if it was 7 p.m.—and
allow myself to feel exhausted and sad. I would try to visit on a Saturday so I knew that Sunday was for my family
and me. I had something to look forward to. When I had to go on a Sunday, I would anticipate the drive and my mental
state the whole weekend.
I would try to divide up responsibilities. Sometimes my daughter or my husband would go to see his mother and I wouldn’t
have to make two stops. I would find another time to be with my mother-in-law with whom I was close.
I thought of ways to make our time together fun and meaningful. After her stroke, my mother had lost her sight and couldn’t
read. She loved poetry so I would read it to her. Something else I did: She felt she had lost track of the friends
she had left who had moved around the country or were even local, but didn’t see. I would call one of her friends
or a family member, and she would “catch up,” even if it was only a two-minute call to hear their voice and “I love
you” or “I miss you.”
I would make sure I touched my mother, whether it was holding her hand, or putting my arm around her. There is far less physical
touch when you’re old and it’s a way to connect and feel loved. I could feel my mother relax and be calmer when I
did this. It made me calmer, too.
Sometimes I would bring a friend of mine along to mix up the visits. It made them less intense (for me) and they kept me
company in the car. I have done the same with friends’ parents.
I talked to a professional. She was terrific and supportive. Whatever emotions I was feeling—there were a ton ranging from
guilt, resentment, fear, stress, loss, ambivalence, sadness, and grief to exhaustion, anxiety, isolation, at times
depression, and my own mortality—I could discuss freely.
I worked hard to make sure that I would have no regrets after my mother was gone. I did everything I could to have made her
feel valued and loved. Was she the best mother? Hardly? But I behaved the way I wanted to be treated and hope my
children will be with me at my mother’s age and stage. I was doing it as much for me—to be the best I could be. I
know getting into bed with her in the hospital was comforting as she was dying regardless of ancient history. Today
I feel proud that I was a devoted and doting daughter.
I made sure to exercise. My love is walking so I would get dressed in the morning in workout clothes and when there was a
logical break in my work, take off an hour. I might walk to do errands or Starbucks, making sure those endorphins
were firing. Even on my darkest days, I would force myself to sweat. When my mother was dying after her second stroke
and I was sleeping round the clock in her hospital room, I asked the hospital if I could go to its staff gym to spend
a half hour on the treadmill. I’m pretty sure they had never heard that request. (I left my mother with loving relatives.)
This is what I wish I had done:
Kept a gratitude journal. I thought it sounded hokey, but friends have recently convinced me to write down three things I
am grateful for every day. Another friend and journalist Janice Kaplan recently wrote The Gratitude Diaries, where
she spent one year chronicling her gratitude—something that at first felt awkward but proved to bear out the scientific
studies that being grateful really works. I have started (this week!) writing down three things I’m grateful for
right before I go to sleep. I even catch myself during the day thinking, “that’s something I’m grateful for, maybe
I’ll write that down tonight.” This could have helped me to keep in mind non-parent thoughts, like a loving husband
and children, a fulfilling career, great friends—a very good life, too.
Wrote down my thoughts. This is not the gratitude journal! It would have been a way to express my feelings. Again, this is
another tried and true strategy.
Practiced breathing exercises and meditation. There is science to prove that they can calm you down and move your worrisome
and dark thoughts and mood to calmness and more positive memories. I’ve recently used deep breathing—even three breaths—to
change the situation. While meditation takes work that I’m not sure I’m ready to do (yup, lazy), I do see a difference
in my mood when I do it. That can be a three-minute exercise. Here’s a website I love that has a variety of meditations
and guides you through the practice.
Truly believed that this phase of my life would end. When I had three babies, I thought the craziness—and mental and physical
exhaustion—would be my life forever. But the cliché is right: these stages do end. Elder caregiving may also seem
interminable but life is finite, right?
My mother and mother-in-law are now gone. I was lucky that they had good care and I wasn’t charged with the in the trenches,
day-to-day tasks. Neither one had dementia. But that didn’t make my mental health as a caregiver easier or less depressing.
My parting advice: Allow yourself to feel the way you do, but make the effort–and practice–to make yourself feel better.
It can start with three deep breaths.
I could staff a large employment agency with the number of people I have hired to help over the years with my father, mother
and mother-in-law. They have ranged from outstanding to good enough, with a few being bigger pills than the ones they
Hiring help for your aging parents or spouse comes down to chemistry and competence. Of course, the most efficient person
can be too talkative, bossy or mean. The delightfully affable might be inept.
Sometimes, it’s hard to predict if it’s the right fit, but your chances are exponentially better if you ask the right questions.
Of course, you can’t do that until you know what your aging parent or in-law needs.
Assess the Situation
How do you find out what Mom or Dad needs? If it’s possible, ask them! (Don’t be surprised if they tell you they don’t need
anyone.) Is it companionship, help bathing or dressing, someone to cook, give them medication or take them around town?
What have your siblings, physician or neighbors observed? What kind of help do they think makes the most sense?
It doesn’t matter if you go through an employment agency, an online company or hire on your own. All three can be good options.
Here’s help for the help:
Be specific. What are your expectations (i.e. that the aide works cooperatively, communicating with family members via email
or phone calls regularly, doesn’t take non-urgent personal calls, understands the terms vis-a-vis vacations and holidays,
is patient and understanding)?
Think about writing a detailed job description. It can be helpful in figuring out what you want even if you don’t end
up sharing it.
Prepare questions for the prospective employee or agency. For instance, take work experience. Has the person done personal
care or worked with someone with Alzheimer’s or mobility issues or who is non-English speaking? Are they comfortable
with your parent’s specific needs? Why did they leave their previous job? What about it didn’t they like? What are
they hoping for in this job? How do they like to get feedback?
Tell them to bring their resume with their work history and contact information as well as references—and check them
out. If you’re hiring on your own, request their proof of identity such as a Social Security card, driver’s license
or photo ID. Let them know you are going to do a background check.
Find out what hours, days or holidays can or can’t they work. Do they have their own obligations and constraints (an
upcoming vacation, a class, young children)? Will their outside commitments impact yours, and if so, how?
Ask them what they find appealing about this job and the eldercare field. Get a sense of who they are.
Trust your gut. If your gut is asleep at the wheel, then rectify the situation—whether that means changing aides or tweaking
Consider a trial run of a week or two to see. Give it a little time but not too much. Would clearer instructions or more
training and guidance turn around the situation?
Know your resources. Start with the Family Caregiver Council, a coalition of national caregiving organizations and experts,
to get a better sense of the different kinds of help, where to find it and strategies for that difficult you-need-help
The Agency or Online Route
When you use an agency or online employment website, you’re really doing two interviews: one with the company and the other
with the would-be worker.
Yes, an agency or company is supposed to do the vetting, reference and background checks, but find out what that means. Do
they check the prospective worker’s driver’s license and record if they’re going to be chauffeuring your mother-in-law?
What kind of car do they have? If they’re using your Dad’s car, do they need to be added to his insurance policy? What’s
their policy on drug testing? Do they have liability insurance?
Consider asking these questions:
What is the agency’s training and follow-up process? Do they make home visits to make sure all is well? How do their
caregivers communicate (technology, written reports, phone calls) so the agency has a constant update? Is there a
written custom care plan and a free needs assessment? Does a nurse do that evaluation?
Do they have a minimum number of hours (often four) for which you must pay? What’s in their service agreement?
Are the aides or workers independent contractors or employees? Is the agency or online company bonded? Find out if they pay
workers compensation and provide unemployment insurance. While you’re at it, ask if they handle all payroll paperwork
and are Medicare certified.
Assuming Mom has long term care insurance, does this company accept payment from her company?
How do they handle issues that arise between the helper and the person or family?
Do you get a choice of candidates? Remember, the agency is working for you. If that’s what you want, request options.
When possible (if there’s not a cognitive issue, for instance), include your parent in discussions and decisions. After all,
it’s about them. Giving up some autonomy isn’t easy. Asking the right questions isn’t, either!
I’m fit (well, maybe not as a fiddle). I exercise regularly and walk distances daily. And yet, I’ve had four bad falls in
a short period of time. There were 18 stitches in my head from tripping over a make-shift chicken wire fence with a puppy;
a black eye, stitches in my mouth and torn jaw muscles from falling on cement; a very public face plant at the airport
(in front of my son and his wife); and down once again on a raised walkway during rush hour.
A friend with Parkinson’s asks me if I have a good sense of smell. When I tell her I don’t—in fact, it’s bad–she urges me
to make an appointment with her neurologist. Frequent falling and a poor sense of smell can mean Parkinson’s, she says.
Fortunately, the specialist gives me a great diagnosis: rather than Parkinson’s, I am a klutz. Simply put, I am not looking
where I’m walking. She tells me to stop taking the muscle relaxants prescribed by the maxillofacial specialist treating
my jaw (from fall #2). It can make me dizzy and more susceptible to an accident.
The neurologist also advises me to work on improving my balance. Have I considered tai chi or yoga? And, for goodness sake,
focus, and watch where I am walking! Heed those uneven sidewalks and unexpected raised curbs in crosswalks.
I am relieved and motivated. I find a trainer to work with me on balancing exercises and find a tai chi instructor (a Chinese
master, no less). I have not had a fall since I started on my quit-falling campaign. Recently I hiked an unsteady mountain
and did not slip once.
But I understand how easy it is to fall, how it happens in seconds with little, if no, time to react. And I know the fear
of falling again. In fact, that feeling is still not gone.
We should be afraid; falling is the #1 cause of accidental injuries and deaths. More than one-third of people age 65+ fall
each year. What’s more, emergency departments treat fall-related injuries every 13 seconds!
While it’s an equal opportunity hazard—younger people fall, too—the chances increase with age.
Factors for falling
Why do you, your spouse or your parent fall so much? Here are some reasons:
Weak balance, poor mobility and motor skills, lack of flexibility and coordination. That’s why strengthening exercises
and programs that target them are so effective.
Fear of falling. If you fall, and then are afraid to fall, you’re likely to get nervous and restrict your activity. That
can lead to loss of endurance, mobility and muscle strength, making you more vulnerable to a fall.
Poor vision. When you’re older, less light gets to the retina so it’s harder to see potential tripping obstacles and
contrasts of color.
House hazards. It may be slippery rugs, electric cords or objects piled up on the floor, poor lighting, lack of grab
bars near the toilet and shower, inadequate stair handrails or storage that is too low or too high.
Medication. Both over the counter and prescription drugs can make you sleepy or dizzy. Wine or other liquor can also
affect your balance, whether you feel downright tipsy or not.
First, ask your – or your parent’s – physician to do a risk evaluation and recommend next steps. (Have them look at Mom’s
medication to see if it could be causing fall hazards—mine did. Does she need her vision checked?
It could be as simple as swapping high-heeled shoes for sneakers, or at least low heels with rubber soles. The shoes need
to provide good support; luckily, there are lots out there that say “fashion” not “fall-proof”.
There are also 10 clinical sites around the country working on a federally funded, five-year study to find effective fall interventions for older adults. Some major medical centers have fall prevention clinics
to evaluate the risk and help mitigate it.
A physical therapist can help Dad boost his strength and improve balance and gait with targeted exercises. If he does fall,
he’s in a better position to catch himself. While you’re at it, have the therapist teach him how to properly pick up
an item from the floor. Or, would a cane or walker keep him steadier on his feet?
Don’t forget your house. The Centers for Disease Control offers a thorough home safety checklist. You could also have a certified aging in place specialist (CAPS) come to your house, evaluate it for safety, make recommendations, and,
if you choose, accommodations. CAPS is a designation developed by the National Association of Home Builders along with
You don’t need a pro to tell you that stockings and socks are slippery and that shoes as well as slippers with rubber soles
Falling is not a given if you’re older. But it is something that requires vigilance, attention and knowledge. Don’t fall
for anything less.
A parent stops driving and then what? If planned well, they will simply swap one set of wheels—their own—for someone else’s.
They will still have their freedom. But finding alternative transportation for seniors is essential for that to happen
and allows them to stay independent and engaged.
It’s important to think about this before there’s an issue. When you can no longer drive—or your “chauffeur” can no longer
take you, your world can shrink. Even if someone you know offers, you may not want to impose or feel guilty for having
to ask so often.
Here are some consequences of not being able to drive:
The better route is knowing about senior transportation options so you can keep your life: still go to dinner with friends
or family, volunteer, attend a movie or play, get to appointments, explore or just leave your home because you feel like
Getting Up to Speed: Driving Options
It takes time to figure out alternatives to driving. Of course, if you live in a city, there will be more transportation
choices; a rural area or small town will have fewer. There may, in fact, be no access to public transportation. You will
really have to scramble or think about making changes, if it’s possible. (You might also consider moving so that you
are closer to amenities and supportive family or others.)
The kinds of transportation vary: convenient public transit (some communities offer volunteer navigators to do a dry run
with Dad of his bus or train route), paratransit for the disabled, private pay taxi-type services, transport arranged
by the community or even neighborhood or volunteer system drivers.
There’s another way to go: People living at home in the same neighborhood or area may join what is called a “Village” organization
for an annual fee. As a Village member, they get access to social activities and events in the neighborhood and other
opportunities that may include vetted, discount transportation services or member volunteer drivers. (There are more
than 125 Villages nationwide. For more information, try the Village-to-Village Network (http://www.vtvnetwork.org).
Navigating Creative Transportation Options
Cities and towns are getting ready for aging baby boomers and their parents. Some will need to get to work and won’t drive.
Check out two examples of how municipalities are preparing:
The non-profit Partners In Care in Maryland has multiple sites that cover rural, urban and suburban areas. An all-volunteer
transportation program uses a time bank system.
Drivers get credit for driving others and can, in the future, dip into the time bank if they need a ride. Passengers
contribute in different ways, i.e. manning the office phone, donating clothing or household items to the organization’s
boutique. There is a charge for wheelchair accessible transportation.
The Eldercare Locator (www.eldercare.gov or 1-800-677-1116) connects you to your local Area Agency on Aging and
steers you to transportation resources in your area
The federal National Aging and Disability Transportation Center (http://www.seniortransportation.net or 1-866-983-3222) is
geared to seniors, people with disabilities and caregivers. It will connect you to paratransit services (part
of the Americans With Disabilities Act) that may supplement fixed-route buses and public rail transport.
ITNAmerica (http://itnamerica.org) is a national non-profit for age 60+. Its Rides in Sight (1-855-60-RIDES, M-F 8 a.m.-8
p.m. ET) has senior transportation resources around the country. For ITNAmerica, members pay dues and drivers
offer door-through-door service using their own cars. The organization has your credit card on hand (a la
Uber and Lyft).
With taxi-like Lyft and Uber, drivers use their cars. Rides are requested through a smartphone app. The app tells you how
much the ride costs and the fee is charged to your credit card. With GreatCall Rides, GreatCall customers
can use the Personal Operator to schedule a ride without using the app. https://www.greatcall.com/services-apps/senior-rides-service-by-lyft
(Don’t forget conventional taxicabs as another route to take!)
SilverRide (http://www.ridesinsight.org) is a for-profit California company that not only drives seniors but also will stay
with them (i.e. a doc appointment, a lunch date).
Make sure you know what these services offer—and don’t. Some questions to ask:
What do they cost and how do you pay (in advance with a credit card, at the end of the ride or not at all)?
Are drivers trained to work with older adults and/or those with dementia? (Increasingly, companies and communities
are training drivers about seniors’ physical and cognitive needs, including dementia.)
Does Dad have to walk to the street to get the ride or will the driver pick him up inside his house? Do they
drop him off at the curb, go in with him or even stay?
How far in advance do you have to schedule a ride?
With ingenuity and research, hanging up the keys means your parents won’t have to put the brakes on their quality
Let’s turn the tables. Instead of you caring for your parent or in-law, imagine that they are caring for you. How would you
Being able to drive keeps you independent and in charge. But, what if your parent told you it wasn’t safe anymore and you
had to depend on them or others if you want to go out? What if they had to be in the room with you when you went to the
Or, what if you needed someone else to do really personal things for you, or they told you that you needed to have help,
or had to move out of your cherished home? How about not remembering where you were or what was happening around you?
What would it be like if your body or mind didn’t work the way they used to?
You get the point. You’d probably feel at least a few emotions: anger, resentment, embarrassment, confusion, fear or sadness.
Might you feel diminished, demeaned or less than? It is incredibly difficult to be in your parents’ shoes.
To simulate what it’s like to be old with impairments (literally in your parents’ shoes), there are special suits you can
don. MIT’s AgeLab has AGNES (as in Age Gain Now Empathy System) and companies can purchase GERT (Gerontologic Test Suit),
another version with a similar aim from a German manufacturer. Their mission: for others to gain understanding and empathy
about the aging process.
If you were to flip the roles, how would you like your parents or in-laws to treat you? Of course, the answer would be with
respect, love, caring, and kindness.
You’d also want it to be as one adult talking to another adult—not as an adult talking to a small child. That’s obvious,
you say. But many people, not realizing it, communicate that way (i.e. “how are we doing today?” rather than “how are
you doing today?”), and it can come off as condescending or infantilizing. Talking down to older adults is so prevalent
that aging experts have coined a word for it called “elderspeak.”
Note: It’s not effective! Here are four examples of elderspeak:
You direct conversations about the older person to someone else and ignore the one it involves (doctors, nursing staff,
shop clerks, waiters are often guilty of this)
You talk to them in a sing-song or exaggerated tone
Even if they have no hearing issues, you address them loudly
You talk extremely s-l-o-w-l-y like they don’t or won’t understand
An aside: even though I am an expert on aging and believe I am a sensitive caregiver, my daughter once told me that I was
talking to my 90+ year-old college professor mother in a patronizing way. I had thought I was being sweet and kind. On
reflection, my daughter was right. My other point: elderspeak is so common you may not realize you are doing it.
At the University of Kansas Medical Center, researchers found that when nursing home staff used baby talk with residents
with moderate Alzheimer’s, they became resistant to care and agitated.
Well, would you want someone to speak to you with baby talk?
It may sound clichéd and simplistic, but it really is this simple: When interacting with your parents, or any senior, the
Golden Rule rules.
If you had a choice between staying in your own home, in familiar surroundings, or moving when you get older, my guess is
that you’d opt to stay. According to studies, most people are with you.
It can beat other options, including long-term care—as in independent or assisted living or a nursing home. (Of course, there
are some wonderful facilities with great activities, help if you need it, and companionship.)
But what if your beloved house has steep steps, narrow doorways (where would a future walker go?), no first floor bedroom
or full bathroom, hard-to-navigate bathtubs and showers, too high kitchen counters and cabinets, and safety hazards galore?
Perhaps you could make slight changes, retrofit the space, radically renovate or build an addition so it’s better suited
for the older you. There are resources to learn what you need to do to make your place safe, accessible and easier to
navigate. Check out the AARP HomeFitGuide, Aging in Place and the National Aging in Place Council. (Tip: Before you do
an upgrade, ask a realtor how it will affect resale value.)
You might prefer to move to an apartment or condo with an elevator, for example, but live in the same community where you
have rich friendships and history.
Let’s do some more imagining: your current house has everything to make it work for all stages of life. But, it’s not near
public transportation or amenities like restaurants, stores, movies or medical offices. You drive now, but what if you
give it up down the road? You may be isolated in your leafy cul-de-sac or rural refuge.
When evaluating whether to stay or go, where you live when you’re older is not just about the suitability of your house.
It’s also about living in a community where you feel valued and connected. It’s about having opportunities to meaningfully
engage with others and being able to get what you need as your needs change.
As one geriatrician recently told me, “You can have the most wonderful house in the country with the most wonderful view
that you thought was perfect for growing older. But, if you can no longer drive and there are no community resources
to help you, that wonderful house can be impractical and unrealistic.”
So yes, having to leave a house you don’t want to leave is difficult. But think of the bigger picture.
You’re a harried and exhausted family caregiver. You want people to be supportive and comforting. But well-intentioned friends, coworkers and family can say things that make you feel worse—or plain angry.
Trust me. During the course of taking care of two parents and one mother-in-law, commuting every weekend to see at least one of them, I was told a heap of unhelpful remarks. Let’s start with, “You’re lucky you have a mother!” or “At least your father-in-law doesn’t live with you!” or maybe said differently, but with the message of, “How hard can it be, your mother is able to hire help?”
I’ve wanted to reply, “You have no clue,” or better yet, “you didn’t just say that, did you?” Whether your parents or in-laws live with you, nearby, or across the country, caregiving is hard and it’s emotional.
To have someone say something insensitive (that they obviously don’t realize is), can be a much bigger deal if you’re exhausted, stressed or have mixed feelings about your role.
My colleague Barry Jacobs, a clinical psychologist and writer, moved his mother up from Florida to be near his home in Pennsylvania. He had a conflict-ridden relationship with her. “I used to hate it when people told me that I was a hero for taking care of my mother,” he told me. “I had so many negative feelings about being her caregiver that their praise just increased my guilt about feeling ambivalently.”
For me, the “hero” comment is in the same family as “I could never do what you’re doing!” Jacobs is also irked by the phrase, “God never gives you more than you can carry.” He thinks that even if he believed that, “hearing it made me feel that my particular concerns were being trivialized.”
But his all-time favorite was, “Why don’t you take some time for yourself?” “I always wanted to respond, ‘what a great idea! I never thought of that before!’” That differs from caringly asking, “Do you have any time for yourself?”
I asked Jacobs’ wife, psychologist Julie Mayer, co-author with him of Meditations for Caregivers, what she found least helpful her caregiving stint with her mother-in-law. “People told me that I’m an angel who will be rewarded for my good deeds,” she recalls. “I know they meant well, but it felt like a huge exaggeration that left me denying it to the person who had complimented me.”
“I’d end up seeming to minimize my efforts which wasn’t accurate either,” she went on to complain. “I also felt misunderstood because although I wanted to do the caregiving, I felt ambivalent and resentful at times. I was not an angel. And I had no idea about what reward I was supposed to receive! The ‘angel’ comment felt oddly dismissive although I’m certain that it came from a place of caring.”
What to Say Instead
In her new book Option B, Facebook executive Sheryl Sandberg writes that when her husband died suddenly at a young age, it helped far more when someone told her they were in it [the sad journey] with her or that “we are going to get through this together” rather than “You will get through this.”
Rather than “let me know if there’s anything I can do,” be specific. How about, “do you want me to come visit your mother and keep you company?” or
“I’d like to drop off a meal this week, what night is best for you?” You could also say, “I’m going to the grocery store today. What I can pick up for you?”
Here are other phrases that experts suggest :
“What you are doing is so hard.”
“How is your mother-in-law [or father] doing?”
“How are you doing?” Asking open-ended questions allows a caregiver to discuss her feelings, or not to, if they don’t want to. It also opens the door for future conversation.
Here’s my advice: Unless you are asked, don’t give any. Instead, give a gift certificate for a massage or facial and offer to stay with their parent while they do. If you are on the receiving end, chalk it up to caring that misfired. Rather than stew, remember what they said and save it for a dumb and dumber contest! You’ll probably win.
A new AARP study shows that only 46 percent of family caregivers ask for, or look for, help. That means there are a lot of haggard and harried family members who are doing the care themselves. And, no surprise here—it’s often one adult child (typically a daughter and/or child who lives closest) who does more than her fair share—sometimes way more.
Why is asking for help so hard? Do family caregivers not want it, or are they just not doing anything to get it?
We know that one in charge often neglects their own health and needs. We also know that they may be performing complex medical tasks, thanks to increasingly brief hospital stays.
What Are They Thinking?
Over the years, caregivers have given me many reasons for going it alone. Here are the top ten:
If I request help, my siblings will view me as selfish and uncommitted
A control issue: No one can do as good a job or get it “right”
My parent refuses help, guilt trips me or insists that I do everything
I guilt trip myself. I’ll feel bad if I don’t do it all. The adult child may be trying to make up for the past, or improve it.
No one else has stepped up. (Hmm, have you asked?)
Hiring help is too expensive. It may be the case, but might your Mom and siblings just not want to part with their money?
My siblings are jockeying for power or reverting to old family dynamics—The Favorite, The Chosen, The Most Reliable, The Caver and Yes “Man” or The Selfless One
I don’t know how or where to get help—or how to ask for it
I don’t trust outside help (“strangers”). How do I know what they’re doing when I’m not there?
Quick Strategies for Getting Help
Change your mindset. Realize that asking for help is smart, not selfish. You know the expression “Many hands make light work”? It was coined by a 16th British playwright. And, 500 or so years later, it’s still true.
Test the waters. Ask for something little. Can your brother take Mom on an errand, to an appointment, out to lunch, or stay with her while you duck out?
Offer choices. Provide options so sibs can decide what they can do. Consider each family member’s strengths. If a sister is organized, can she manage care coordination?
Could another sibling pay Dad’s bills online or take charge of house repairs? How about ferrying Mom to adult day care or arranging for her to get there?
Be inclusive. They may want to help but are given go-away vibes. Keep family members informed and able to access health information. Is it easier through an app (i.e. CaringBridge or CareZone), email or conference call?
Think outside the family box. Can a nearby niece be on the care team or at least a backup in an emergency? How about a friend or neighbor? An Aging Life Care Professional (aka geriatric care manager) can put all the moving parts together and knows community resources.
If Mom lives at home, there may be a “village” in her area. It’s a members’ neighborhood organization that often provide transportation, vetted service providers referrals (home repair, a dog walker) and hold social get-togethers and events (movie, traveling, a yoga class).
Your company may provide eldercare help to employees. They may range from flextime to elder care resource and referral services, Dependent Care Assistance Plans, access to senior care advisors and financial and legal experts
Have your list before there’s a crisis. You will have many more options and it will be right there!
It’s possible that you or your family member doesn’t want help. Others need to respect those wishes. But at least you’ll know the next step if circumstances or attitudes change. Caregiving is not a one man—or woman–job!