Many of our community members have had to quit their jobs or retire early in order to serve as a family caregiver. Many more struggle to juggle caregiving and their career.
Working family caregivers often manage to stay at work by arranging for a flexible schedule, cutting back their hours, switching to a different type of job, or arranging to work from home. Other caregivers find themselves becoming entrepreneurs developing tools and products for other caregivers.
When Rick’s parents couldn’t live independently any longer and needed his support, at first he was able to continue working full time. Eventually, he realized this wasn’t going to work long-term, especially as their health declined there were more jobs – outside of his own job – to do and there weren’t enough hours in the day to both work and fulfill his responsibilities to his parents. He felt torn between two important priorities — and he’d need an income in order to support himself and care for his parents.
Being hesitant to share such personal information with his supervisor at work, Rick was nervous to ask about cutting back his hours. There was some inner turmoil, but something had to be done. Luckily, his employer was supportive and agreed to let him work three days a week, so he could devote time to support his parents. Now a number of years after the fact, Rick realizes that, considering the options, an employer is often wiser to work with a current employee needed caregiving time off rather than try to replace that valued employee and go through the time and expense of advertising, screening resumes, interviewing candidates, and training.
A part-time schedule provided Rick increased scheduling flexibility, allowed him to set up his parents’ medical appointments for his days off, and reduced the number of phone calls he was forced to take and/or make at the office on his parent’s behalf. Cutting back his hours made it easier to make work his full priority when he was in the office. Having a little bit less on his plate really reduced the stress he was under, heightened his concentration level, and allowed him to feel more productive and focused. Being able to continue making an income, even if it was reduced, gave him a real peace of mind.
In a way, his time at work became a type of respite. His life may have been all about caregiving at home, but he didn’t talk to his coworkers much about caregiving, allowing him to maintain another side to his identity. As another means of personal escape, Rick also took writing classes during this time. Caregiving can be all consuming, but work and school kept him firmly rooted in the career world and creative fields.
Rick’s dad was able to go to a day program for people with Alzheimer’s. This gave his mom some time for herself. Rick was caring for both of his parents, but his mom was also a caregiver to her husband, despite her illness. It was important to make sure she could relax, sleep, and take care of herself so she wasn’t exhausted by caregiving.
In addition to the day program, Rick used driving services to make sure his parents got safely to appointments when they could manage on their own. Arranging transportation was still time consuming, but it helped him stay at work.
He worked part-time for nearly two years. One huge benefit to working part-time was being able to keep his foot in the door at work. His career wasn’t derailed by a long absence. Continuing on a part-time schedule made it much easier for him to transition back to full-time.
Rick Lauber is the author of The Successful Caregiver’s Guide and the Caregiver’s Guide for Canadians.
Adrienne and Richard at the 1st Annual National Caregiving Conference in Chicago
MSNBC news anchor Richard Lui helps take care of his father. The hiccup is that Richard lives in New York and his parents are in San Fancisco!
He’s been splitting his time between the two coasts since his father was diagnosed with Alzheimer’s five years ago. When his dad couldn’t remember his sibling’s names, they knew something was wrong.
Richard sat down with his boss and explained the situation early on. His boss is also a long-distance caregiver, so she understands how important it is for people to be devoted to both our careers and our families. He now serves as a news anchor on the weekends, making diving his time do-able, although certainly not easy.
Even as a long-distance caregiver, Richard feels it’s incredibly important to stay overnight at his parents’ home. He needs to hear the bumps in the night in order to really understand what’s going on — and experience both the difficult and heartwarming moments of caregiving.
His mom doesn’t consider herself a caregiver, although she’s the one who takes care of her husband day in and day out. She’d never ask for help, but Richard is honored to be there for his parents.
Richard’s father was a pastor, his mother a teacher. His father has always been a very loving, happy man. He isn’t always sure who Richard is, but he knows that he loves him. As Alzheimer’s changes his father, Richard feels the core of his father’s identity is being revealed. He views it as a type of rebirth.
While Richard’s strong faith is guiding his family through this journey, he knows the times ahead will be both challenging and beautiful.
So many of our community members are in this situation. Here’s what a few of them have to say…
I was working full-time when he was diagnosed and he ws retired. I was able to continue working for 1 1/2 years, but it became increasingly harder. My employer made me an incredibly generous offer of part-time work from home and I was able to do that until I retired in June 2015. I still wasn’t 65, but made it work. Those 3 years were wonderful because I was still able to get out to work some of the time and keep up my professional relationships and work friendships. – Deb
I have [professional] caregivers during the day, so I can work. – Cathy
I recently returned to work outside of home after being a stay-at-home/work-at-home mom for 10 years. As the caregiver to my partner, the main breadwinner for our family and the one who handles most household and family-related tasks, I often find myself feeling overwhelmed, frustrated, resentful, and hopeless. – Melissa
I feel part wife / part maid/ part cook / and I work part time. – Susan
I work full time at an office. She is on longterm disability and is alone all day. I don’t make much plans without her because time together is precious. – Lesley
I am not only my mother’s primary live-in caregiver, but we also have a paid caregiver from an agency for about 4 hours a day, 3 days a week. My mother has a fixed income and I have only been able to work part-time since she can’t be left alone for very long. – Laurel
I have to do everything plus work full time. – John
I take care of my husband, whose made great strides in the past year, so he needs me less and less. However, it’s still a lot to handle and I’ve had to take a lot of time off of work to take care of him, which has been a financial burden and not great for my career. – Allison
I cared for my parents from 2012 until July 2015. For those years i was going at 90 miles an hour,working taking care of parents and also trying to have a life with my husband. Then after July 2015, everything stopped. I no longer had my full-time job, mother is in the nursing home and dad is gone. All the friends are still working or have not kept in contact. I tried to go back to work and was told I would have to start at minimum wage and without health insurance! I was there for 12 years. – Lorrie
When my husband got hurt I worked a full time job and also tried to take care of him and believe it or not; I did take care of him and I did a very good job of it. My husband was on tube feeding and could not talk or walk, but when he left the hospital he could talk and 6 months after his accident he could also eat. Yes, we are battling new problems now, but he and I make it together. – Sylvia
I work full-time and through the Advantage Care program, my husband has a bath aide that comes to assist him Monday-Friday. come home from work expecting a,b,& c to be completed and most times only a is done. It is very frustrating for me but my husband and I can never come to agreement about it. – Tina
I have always had to work to support us so I have had specialized day cares, day programs or sometimes in-home staff to manage care her while I work. After work, the real work begins. The doors close on me and I become Super-Mom, Legal Guardian, Psychiatric Nurse, chief researcher, housekeeper, cook, personal care attendant, program manager, organizer. There is no day off, no outings, no friends stopping by. I don’t ever get sick leave and use vacation time to keep my income at a manageable level when I spend too much time at her doctor’s appointments and hunting resources. It’s an absolute grind. I work strange hours, take work home, work Saturdays. Whatever it takes not to get fired. – Cynthia
I care for my husband who has had two TBI’s. He is totally dependent on me for everything. I am lucky enough to work a full time job from home while taking care of him. I rarely can leave my home as it is difficult taking my husband places for many reasons and I cannot leave him alone because of his cognitive deficits. – Barbara
I work full time, care for my sister three nights per week, and manage all of the aspects of her life the rest of the time. – Wendy
I do my best trying to hold this whole thing together, but it seems to be spinning out of control with no end in sight. I do have two employees that stay with my wife so I can work, my mother helps out as well. My wife suffered severe brain injury. Sometimes I relate my situation to the movie ground hog day. Each day we start over: I answer the same questions again, I go over the normal routine things that have to done every day. I think my wife no longer comprehends time. My daughter has started college and is no longer here regularly. I always was the working man that could handle all the load put on me. There is no break from this load and I am getting tired. – Keith
I cannot work the hours I once did because I have to care for my wife. She has a type of cancer that comes back, often fatally. I read the internet and see that she probably has not a lot of time. Of course, her doctor is silent. If I am to be her caregiver (there is no one else) I think I must give up my business. So I have to decide when. If I put my practice up for sale soon, my wife will be very upset. – Peter
Some comments have been lightly edited for clarity
Here are some tips for finding a job that allows you to work remotely and how to actually get work done at home while caregiving.
If you need to leave your job to provide full-time care, check out these programs that pay family caregivers to see if you qualify. Our community can vouch that these programs are real, although they fall short of what we need and far too many people don’t meet the requirements.
You’re a family caregiver and need outside help. These days, most large and mid-size towns have caregiving agencies. Before you sign with an agency do your research. Keep in mind that it can you weeks to adapt to a paid caregiver. That’s because you are creating a partnership.
My husband’s legs are mostly paralyzed and I’m his primary caregiver. With help from therapists he learned to stand, stand and pivot, and walk 50 steps with the aid of a walker. Still, he needs lots of support. I’m on the job 24/7 and rely on paid caregivers. A caregiver comes each morning and stays for two hours.
The training and expertise of paid caregivers varies widely. Retired nurses, nursing assistants, and nursing students are an ideal match for our situation. Just as I want the best for my husband, I want the best for paid caregivers. You probably want the same and these tips will help you forge a partnership..
Start with a home “tour”
Even if your place is small, the caregiver needs to get a sense of the space. Caregivers need to know where the linen closet is, where incontinence supplies are stored, which drawers contain underwear, and which contain socks. I store towels in baskets with labels: towel sets, hand towels, floor towels (for the shower wheelchair puddles and drips).
Explain your daily routine
Our routine is so detailed that the agency created a task list for caregivers, a practical idea and one you may wish to use. I think a routine helps caregivers and care receivers alike. It also helps with time management. Spending too much time on one task deletes others.
Take advantage of perks
Most caregiving agencies allow caregivers to do light housekeeping and you may as well take advantage of this. I ask the caregiver to dust, vacuum, clean mirrors, etc. The caregivers know where my cleaning supplies are stored and I keep them well stocked.
Follow agency rules
Paid caregivers aren’t allowed to dispense prescribed medications or apply prescribed lotions. Always heed these rules. Still, I tell the caregiver about the medications my husband is taking because some cause sleepiness.
Frame concise, clear sentences
Caregivers must adapt to different settings, people, routines, and equipment. Often they race from one client to the next. To save time, be as concise as possible. For example, “Please carry the laundry basket to the laundry room.”
Share special needs
My husband wears a brace when he practices walking and getting ready is a process. The nine steps: 1) put on support socks; 2) put on shoes; 3) put brace on left leg; 4) put lift on right foot to equalize the length of his legs; 5) put half sock on left shoe so the paralyzed leg can slide; 7) get the walker; 8) brace the walker as he stands; 9) Be ready to catch him if he falls. I help my husband stand and follow behind with the electric wheelchair.
Follow the Golden Rule
Treat caregivers as you would like to be treated. When the caregiver leaves I say, “Thanks for your help.” According to one caregiver, we’re the only people who do this. Without paid caregivers I would be an exhausted, aching, discouraged wife. Paid caregivers make my days easier. Cheers for them all!
The internet is full of work from home schemes, many of which are scams. Thankfully, many real opportunities for remote work are out there. The ability to work from home has been wonderful for me — I can be there for my wife’s doctor’s appointments, give my parents a break caring for my grandmother, and use my commuting time for something more valuable.
If you have a computer, high-speed internet, and a quiet place to work, there’s a remote job that’s right for you.
Your current job
Many jobs can be done remotely, at least part of the time. It’s not unusual for a boss to let you work from home part of the week or for a few months rather than lose a good employee.
Talk to your manager about working from home before you decide you need to quit. You may be able to use FMLA to keep your current job.
Web developer & designer
You can design a website or write code from anywhere and many companies are happy to hire the best talent, regardless of where you live. There are tons of online programs to learn how to code, both paid and free, as well as intensive in-person courses to get you up to speed quickly. Before you jump in, think about what language you want to learn and what you’re looking for.
Where to find jobs:
Responsibilities for community managers can vary greatly. Some require a lot of face-to-face work, while others are 100% social media. It’s a mix of writing blogs, supporting customers, and marketing work.
Where to find jobs:
If you’re fluent in multiple languages, there are a lot of opportunities for translating texts. Many of the documents are corporate or technical in nature, so your previous job experience can be important to landing better paying projects.
Where to find jobs:
When you call customer support numbers, many of the people you’re speaking to are at home, not a call center. Working as a virtual agent allows you flexibility, as long as you have strong customer service skills.
Where to find jobs:
Writer & editor
If you have strong writing skills, there are many opportunities out there to get paid to write articles, website copy, marketing copy, technical documents, and reports. There are also opportunities for editing and proofreading. Learn more at The Write Life.
Where to find jobs:
You don’t necessarily need a professional background in teaching to be a successful online tutor, although it doesn’t hurt. Just about any skill you’ve mastered is something you can get paid to teach.
Where to find jobs:
As an online seller, you’re not getting a job so much as you’re making a job. You can set up your own online store and sell just about anything. Etsy and Shopify both have strong support and seller communities to help you get started. Just don’t invest your life savings in Beanie Babies.
Where to set up your store:
- Ebay (online auctions)
- Etsy (handmade goods, vintage items, and craft supplies)
- Shopify (make your own store)
- WooCommerce (make your own WordPress store)
Want to learn about other ways to make money online? I’ve Tried That is a fantastic blog that — you guessed it — tries out all the different opportunities out there and lets you know which ones work. Here’s their directory of how to make money online.
Remote job sites
There are a few sites I can’t not mention. These sites have a variety of different remote jobs that are worth keeping an eye on.
- Power to Fly was founded to help moms find remote jobs. Their listings are vetted.
- Idealist specializes in jobs with nonprofits and mission-driven companies. Their site has the option to filter for remote jobs.
- Remote OK has a ton of jobs, from web development to non-technical positions.
- Angellist has a fantastic startup job board that allows you to filter for remote positions.
How can you spot a scam?
Stories of scams abound on the internet. You don’t want to get caught up in one of them. Steer clear of:
- Anything that’s promising that you’ll make thousands of dollars with hardly any work or getting you to enlist your buddies is probably not a legitimate business.
- Anyone who’s asking for your personal or financial information.
- Anything that requires you to spend money upfront (aside from the requisite laptop and printer). Any money you wire is gone forever and credit card protections don’t protect you from poor business choices.
- Job offers that appear without an interview or even an application.
None of the options above are ‘easy money.’ They all involve a lot of hard work — you can’t just set up an account on Elance or Shopify and watch the money roll in. It takes time to establish yourself and find work. And don’t forget to check into the tax implications of freelance work.
Get to work
Of course, working from home doesn’t mean you’re available all the time. It’s important to set boundaries so you can take care of your family while getting work done.
The ability to work from home makes so many of our lives easier. Of course, easier isn’t the same as easy.
7. Set hours
One of the benefits of working from home is being able to have flexible hours. It’s great to be able to take an afternoon off to take someone to an appointment. However, if I don’t set hours for myself I can end up accidentally working way more hours than I should and no one knows when I’m ‘on call.’ Set hours based on the schedule that works best for you, your coworkers, and the person you’re caring for. It’s fine to adjust it from there, but try to stick to a schedule.
6. Set boundaries
Yes, you’re home so you can provide care, but that doesn’t mean you’re available 24/7. Set times when you’ll be available to help and other times when you’re off-duty for anything other than emergencies.
5. Make space
As tempting as it is to keep someone in sight at all times, it’s incredibly distracting and makes it impossible to set boundaries. Create an office area (even if it’s a corner or the kitchen table outside of meal times) and make sure everyone understands that if you’re in your ‘office’ you’re busy with work.
4. Work together
Depending on who you’re caring for, you might be able to work together. Sure, they might be coloring, knitting, or working on a game of solitaire, but it’s a great way to keep someone with you and still get work done.
3. Get out
When caregiving duties are heavy, the office can easily become your only social time. Use the time you save by not commuting to see your friends, go for a walk, and have some time to yourself. These things are key to staying centered and focused — for work and caregiving.
2. Get help
If you need undivided attention for an important project or work is starting to pile up, it’s time to get help. Get a friend, family member, local volunteer, or professional caregiver to give you a break so you can catch up.
1. Connect with other caregivers
Sometimes your friends just don’t understand what you’re going through and that’s okay. Connect with other caregivers — here on our forums and through local organizations — to share advice and talk to people who get it. Plus, you can team up with other caregivers to pool your errands, find great professional caregivers, and give each other breaks.
Working here at The Caregiver Space has me spoiled. I don’t need to hide it if I’m logging in from the hospital wifi network and no one questions the need for me to work remotely from my grandmother’s house for a week here and there to give my dad a break. But I’ve spent plenty of time in front of normal offices, where you feel like you need to keep caregiving a secret. Taking phone calls in the bathroom, trying to keep it together from 9 to 5, worrying about how many long lunch breaks you can take before you get fired add an additional layer of stress to dealing with a medical crisis.
How do you act like everything’s normal?
Find an ally
Maybe you’ve lucked out and have a supportive boss. Many supervisors are willing to be lenient when they know why you’ve gone from their star employee to seeming distracted. The people on your team might be more willing to take on a little more work or cover for you knowing that you’re exhausted because you were up all night dealing with a medical emergency. You don’t have to give them details; a simple heads-up that you’re dealing with some medical issues and recognize that you haven’t been totally on your game is enough. If you can let them know what you’re doing to make sure your work is taken care of, that’s even better. The big thing is to let your supervisor and your team know that any decline in your work is temporary, for a reason they can sympathize with, and you’re committed to your job. This is a lot easier if you’re close with your coworkers to begin with, but even seemingly soulless corporations are run by human beings with hearts.
You’re not the first one to have a bff go through chemo, the first parent whose child is crippled with mysterious symptoms, the first person whose brother went off his psychiatric meds, or the first one whose parents are refusing to accept the outside help they need. Talking to your work friends can connect you to other coworkers who’ve faced similar impossible-feeling situations. Having a coworker who can listen to you panic for 5 minutes or give you a hug is surprisingly important.
Know your rights
If the person who’s facing a medical crisis is a friend, neighbor, or boyfriend, you’re probably out of luck. But if you need to take time off or rearrange your schedule to support an immediate family member, there are some basic protections. Check your company handbook to see what policies might apply to your situation. Go over the FMLA rules carefully to see what your options are for taking time off. FMLA doesn’t cover taking care of your siblings, aunts, uncles, or cousins, but your company might have a policy allowing it.
Many big corporations give you access to nurse hotlines, counseling sessions, legal guides, and other benefits you might not think to look for. These would probably be listed under an Employee Assistance Program (EAP).
Once you’ve done some basic research into what your rights are, you’re in a good position to talk to your supervisor and HR to ask for a more flexible schedule, the ability to work remotely, or time off.
Learn how to rebalance
Sometimes you get a phone call with crushing news right before you need to make a client presentation. Sometimes someone makes a snide remark and suddenly it’s all just too much. It’s incredibly important to learn how to find your center again – quickly! – when you need to maintain a professional facade.
Schedule a 10-minute meeting with a work friend to decompress
If you know it’s going to be a rough day, schedule in time to ground yourself. Make it official and book a conference room so you can get a few minutes of privacy.
Put your headphones on
We all have songs we find particularly comforting. Allow yourself to zone out and get lost in the music.
Take a walk around the block
Or grab a cup of coffee or hide out in the stairwell or whatever you need to do to clear your head. Acknowledge what you’re going through and the feelings you’re experiencing and focus on your breathing until you’re feeling okay to go out again. Go back into the office to find a friendly face and tackle an easy or repetitive task.
Featured image credit: Death to Stock
I remember the moment when everything changed in my family. It was a Sunday in May 2011, and I was at work, when my cell phone rang. It was my mom.
“Esther, I don’t want you to worry,” she told me, “but your dad just had a stroke.”
And just like that, my mom became a caregiver joining the tens of millions of other Americans who are caring for an aging parent, a spouse, a sibling, or a friend.
In the weeks and months that followed, my mom devoted her life to caring for my dad —feeding him all of his meals, bathing him, and navigating the complicated and patchy long-term care system in our country to make sure he could get the care he needed. And this was on top of her full-time job as a dental assistant.
Caregiving for my dad became a family-wide team effort (and luckily, my mom had the support of my youngest brother, who’d just graduated from college and moved back home to help take care of our dad). I would fly down to Texas from New York as often as I could, and that’s when I would see the toll that caregiving was taking on her—the nights that she would fall asleep in her desk chair, exhausted after 16-hour days, the piles of bills and mail that would go unopened because she simply didn’t have the time to think of anything other than making it to the end of each day.
As my dad’s health declined and we realized that he needed more support than we could provide, we began to worry. Could we afford a home care aide? (No.) How would we find one? (No idea.) What if he had to go to a nursing home at some point? How would we be able to afford the cost, which was several thousand dollars a month? What did Medicare cover? (Practically nothing.)
What I learned through all of this is that as a nation, we are hugely unprepared to meet the needs of families like mine who are struggling to care for our loved ones, especially as they age. We face impossible choices — leave our jobs to become caregivers, or take on caregiving responsibilities on top of full-time work; spend down our assets to qualify for Medicaid or go into debt; care for ourselves or care for our loved ones, often to the detriment of our health.
But this can change, especially if more of us who are caregivers demand real solutions.
Caring Across Generations is building a movement to say #WeAllCare, and that it’s time for our elected officials to hear from us and to make caregiving a part of every discussion about the future of our country.
The timing couldn’t be more crucial, as every day, 10,000 Americans turn 65. By 2032, there will be more of us over the age of 85 than under the age of 15. It’s time to start building the infrastructure, policies, and solutions we need to care for our aging loved ones now and into the future.
As Caring Across co-director Ai-jen Poo writes in her new book The Age of Dignity, “We brought water and electricity to every home. We can bring quality care to every home.”
That vision inspires me every day. I hope it inspires you as well. Sign our pledge to say #WeAllCare today.
As the general American population continues to age, more and more people are stepping into the role of caregivers. The Employment Panel of Caregivers projects that the number of seniors requiring care will double by the year 2031. This means additional resources need to be available to these individuals to prevent stress, burnout, and potential self-harm.
Caregivers are defined as individuals, unpaid and paid, who provide care, support and help with daily living activities for another individual with some type of ailment. Yet, one thing that is important to note is that caregivers are not monolithic. The Employment Panel of Caregivers notes that men are almost as likely as women to be caregivers (46% vs. 54%) although women are more likely to provide 20 or more hours of care per week. The majority of caregivers (44%) fall into the age bracket of 45-64. Yet, there are plenty of millennials (45<) who are taking care of spouses and relatives as well. 25-44 year-olds account for 28% of caregivers while the youngest caregivers in the age bracket of 15-24s make up 15% of caregivers.
Many of these caregivers, however, work outside of the home and often take on additional work responsibilities in addition to the ones they have at home. According to the Employment Panel of Caregivers can make up more than 35%- up to six million people- of the general workforce. These caregivers are often balancing dual roles. They are spending more and more time outside the workforce taking on responsibilities of transporting the care recipient, maintaining the household they are in, and additional day-to-day tasks such as scheduling appointments, and managing finance while providing personal and medical care. In some large corporations, up to 18% of those employed are current caregivers, and 10% have been caregivers in the past. Many may also request to leave due to the variety of factors that they are dealing with increasing responsibilities outside the office. Researchers at LifeHealthPro report that unmet stress for caregivers, who cannot hire paid help for their loved one, lead to 61% of caregivers asking for a leave of absence. Men are also 159% likely than women to ask for time off from their job due to demands.
Because the number of caregivers will only continue to grow, corporations and employees must work together to ensure the wellbeing of the caregiver as well as the productivity of the general workforce is at a healthy level. Some suggested solutions are more flexible work hours along with work-from home arrangements, access to respite care, tax credits for family caregivers, and more information on support groups. Hopefully with new technology, and the continuous recognition of caregivers needs lead to better work-life balance initiatives for all.
14% of Americans in their 40s and 50s are juggling their careers along with caring for a parent. 60% of family caregivers work full- or part-time. It’s not just older workers who are providing unpaid care for family and friends – 35% of caregivers are between 18 and 49. In fact, 16% of all adults provided some level of unpaid care for an elderly relative this year. The problem is only going to become more pervasive, as the number of older americans will more than double in the next 20 years.
One in 4 working caregivers have contemplated changing jobs because of their caregiving responsibilities. They’ve cut their hours, avoided business trips, and even turned down job promotions. In the end, 16% quit their jobs and another 13% retire early. It pays to care. Don’t lose your most valuable employees!
How can caring employers support their caregiving employees?
Nearly all employers take co-pays into consideration when choosing health insurance policies to offer their employees. Fewer consider whether or not insurance coverage provides adult day care and respite care. Some policies allow employees to add an adult family member to the policy and provide geriatric care management support. Caregivers can benefit from access to counseling and therapy to deal with stress and grief. Take a look at your current health insurance coverage options to see what’s there to support caregivers – and consider adding to it.
Additional paid time off
Five sick days is fine for a healthy worker, but those days quickly vanish for caregivers. Removing the distinction between vacation and sick days to provide a general block of paid time off (PTO) provides additional flexibility. Providing additional paid time off will allow caregivers to take care of their own health.
Treat people as individuals
It’s true that women bear more of the caregiving burden than men when you look at the statistics, but many men bear significant caregiving responsibilities. Forty percent of men serve as primary caregivers and many more provide regular caregiving support.
Giving your workers a flexible schedule is the biggest – and easiest – thing you can do to help working caregivers. Allowing your workers to adjust their hours, compress their work schedule, or work part-time temporary could very well save a staff member from being forced to quit. Allowing someone an exemption to mandatory overtime or providing them enough advance notice so they can make arrangements is also a huge help. These are steps that have been shown to improve employee satisfaction for all workers, not just family caregivers.
Being away from home can be stressful for caregivers, especially for those with a significant commute. Working from home allows caregivers to provide assistance throughout the day while still being productive employees. Allowing caregivers to work from home allows them the peace of mind of knowing they’re there to handle anything that may come up.
Many caregivers are afraid that taking unpaid time off will jeopardize their jobs. In the US, companies with 50 or more employees are bound by the Family and Medical Leave Act (FMLA), but some employees fear that taking leave will stall their career or even put their future in jeopardy.
Access to experts
Access to experts through an Employee Assistance Program (EAP) can be a huge perk. Some workplaces offer seminars and assistance filling out paperwork for FMLA, retirement planning, long-term care, living wills, estate planning, and other legal services. Others even provide courses on coping with the stress of informal caregiving and the resources available.
Big corporations have the power to speak up in support of legislation that supports caregivers. Look into the laws that impact family medical leave, long-term care, and estate planning.
Regardless of our titles, we’re all people. Compassion can go a long way toward fostering mutual respect. Company-wide training for supervisors can help them understand and prevent potential conflicts. Work with your employees and HR to find ways that caregivers can take personal calls, attend doctors appointments, and manage stress while keeping up with work. Removing the stigma from working from home, setting a flexible schedule, and utilizing company-sponsored counseling will make for a happier, more productive workforce.
Have a policy
Ad-hoc decisions open you up to potential liability issues. Provide clear policies in your employee handbook, along with definitions of “caregiving responsibilities” and “family.” It’s clear that spouses, children, and parents are family members, but what are you comfortable giving workers time off to care for in-laws, cousins, or aunts? Decide now and put it in writing so you don’t make an arbitrary decision later.
Besides FMLA, caregiving responsibilities are mentioned in the Americans with Disabilities Act, Equal Pay Act, Pregnancy Discrimination Act, Civil Rights Act of 1964, Employee Retirement Income Security Act, and others. US Hastings College of Law provides a guide to preventing discrimination against employees with family responsibilities. Litigation regarding discrimination against family caregivers has increased 400% in the past decade.
Caregivers are great workers
Caregivers are dedicated, resilient, and resourceful. Don’t be afraid to hire someone who has an employment gap because of caregiving.
Statistics: Pew, Health Advocate, & AARP.
Today we know that seven out of 10 caregivers work full or part-time and make up more than 15% of the U.S. labor force. But these statistics only tell part of the story. The real story is told by the caregivers themselves, many of whom have been laid off because of caregiving, or were forced to quit their jobs, or are only now re-entering the workforce after a decade.
We recently asked our community of over 30,000 to share their story with us. Employers, corporations, small businesses, listen up— these are the experiences, not just the numbers, of what your employees face as caregivers.
Have you had to leave the workforce because of increased caregiving responsibilities? What has that been like for you?
I stepped down from a job I loved to care for my mom, it’s the hardest thing I’ve ever done. – Reese K.
I lost my job because I couldn’t tell my then employer when my mother was going to get better. They weren’t willing to work with me or change my shift. I also had to withdraw from University too. – Apria G.
Being a nurse I just went from paid to unpaid and there is no escape. – Karen P.W.
I am 60 and trying to re-enter the workforce after a decade spent caring for my mother who was challenged by Alzheimer’s and dementia. – Kimberly H.M.
I left my job as an office manager a year ago to help my husband. He was hit with an IED in 2011 and shattered 7 vertebrae. He is in constant pain 24/7 and due to all the nerve damage he has to use a catheter for the rest of his life and he is just only 36. – Jennifer S.
I quit my job to take care of my mom. It would be nice to have some extra income coming in. – Karen S.F.
I quit work 4 years ago. Of course when my husband improved somewhat I was sorry because of loneliness and stress, and because my life has become so small. Now I find myself at 63 not really having the energy to take up with a new job. The caregiving life is very limiting… often depressing. – Mary M.
I lost my job a year ago and have not been successful in finding employment. I am okay with that because I am fulfilling my purpose here, caring for my mom. I don’t get breaks, vacations or days off but I wouldn’t trade my life for anything. – Michelle P.
Financially horrible. – Janet Winter
I retired early to move back home with my parents 5 1/2 years ago. My sister was here but wanted to put Mom in a nursing home– she was still active at that time but had quit driving. She lived in the yard in a mobil home our parents had bought for her and her family to live in rent free. She would go for days and not check on them. When I came home she got mad and moved to another state. I am now receiving SS and thank God everyday I still have my parents my Mom is 90 and had moderate Alzheimer’s and my Dad is legally blind with congestive heart failure. It is just me and my grown kids they have their lives but do help. – Hilda T.
Left my job in 2001 to take over as spousal caregiver, monthly paycheck below poverty level, hours increased. To say it has been easy would be lying, learned how to get by on next to nothing, stretch a SSI check to last all month. Would I do it all over again if needed? Yes I would. – Charles S.
I had to take early retirement when it became apparent my husband could no longer be alone for any but very short periods of time. He is now in stage 6 Alzheimer’s, and I can not leave him long enough to even go to the bathroom. He calls out asking where I am. We have sold our home and moved into a travel trailer to make it easier for his need to be close. The only time he allows me to be more than 15 feet from him is when I am preparing supper. It’s hard not having friends anymore, and family is to far away too. But I know that this too shall pass. Picking up the pieces will be another story. – Judith H.
I had to quit working for 6 years b/c all working + caregiving was was just burning me out. Since we were receiving Housing assistance (sec 8) and SSI, any money I made went to those programs. It just didn’t make sense for me to keep working. And now, my husband and I have been separated over a year, now in the process of getting a divorce, I was forced out of our house, had to move in with my parents, and have been working a part time job training program for the last year, and am doing what I can to find a full time job so I can be on my own… caregiving is hard enough on its own… but the additional financial burdens… especially those ‘helped’ by outdated gov’t programs, can be enough to break the caregiver camel’s back– it’s just one of many things that broke mine, and caused my to get burnt out and for our marriage to fail. But the gov’t doesn’t care about that– they just care about saving pennies now, so they can spend $$ on Nursing Homes in 5 years!!! something needs to change… – Rebecca H.
I quit a job to care for my 90 year old Grandparents. I have done some freelance photography over the 4 1/2 years I have been a caregiver. I took on a temp job last winter for almost 5 months and it just about killed me. It is a constant fight within yourself that you should be able to do more. – Chris M.
I was an HR Director. I thought that job was tough… Nothing like a caregiver when it’s your own family. Wow. – Stefanie W.
I am caring for my 86-year old father (Lewy Body Dementia) & 84-year old mother (Alzheimer’s). I was stressed at work due to my parents still living at home all alone. I resigned from my position at a local high school in order to care for my parents full-time. – Maria C.
Quit work in 2012 to take care of mother in law. Since then, my mom has moved in with us. It is a roller coaster ride. My husband still works, wish I did. I do the best I can, wonder if its good enough… I want to do good, not sure if I am, trying though. No help, just me and hubby doing what we can. – Rita C.
I left the workforce to deal with the VA for my husband. We have had a very long road and this year we have come to find out my husband might have a TBI that has NEVER been looked at. I work more hours now (with no pay or help) than I ever did as a bank teller. – Kristen D.
It’s changed my entire way of life. We ran through both my mother’s savings and mine paying for daytime care while I still worked. Now the two of us try to survive on her Social Security. There is nothing left at the end of the month for even small luxuries–hair cuts, a mani/pedi, a bottle of wine, a restaurant meal, even a soda from a fast food restaurant on a hot day are all things of the past. The stress of trying to find money for a trip to the veterinarian or a home repair, added to the isolation and no respite care make life a pretty unrelenting weight on my shoulders. – Betsy K.
First I tried cutting back my hours. I ended up not being effective at work or as a caregiver. The job had to go. It’s a good thing too as my father-in-law needed more and more care. It was very hard bit it also gave me the time to connect with him in ways that would not have been possible otherwise. His moments of clarity were fleeting but they revealed an innate intellect far beyond my own and glimpses of an extraordinary life. Tough as it was is do it all again. – Bobbi C.
My son was in a car accident in ’04, he has a brain injury with right sided semi paralysis. I took a leave for 8 months to be at the hospital where he was recovering. When he came home I quit my job to care for him 24/7. Family helped a little in the beginning. I almost lost my home, but was able to save it. It can be hard, but it is always rewarding. I love son and couldn’t imagine him being in a home. – Valerie F.
It’s hard, this is my job and I know if I got another I couldn’t care for my mother anymore and they make it harder, I work for the state as a in home care provider but they make it tough for us, always cutting pay or hours but still, I never really get a day off or holiday, it’s an all day task but I love my mother. – Jessica S.
We made $37 over the allotted limit for any assistance, so I ended up signing my house over to the state so I could get home a health aide while I work 50 -55 hrs per week. They’re worthless except they do take care of my wife when they show up (we’re on our 27th home health aide & 7th company). I still have to do everything else which has been pretty hard on me for the past 5 yrs, my family is spread out through out the world and her family which is only 15 -30 min away can’t accept what the MS has done to my wife so they stop coming over and stopped calling which puts everything on my shoulders.- Jerry D.
I gave up my job 30 years ago to care for my newborn daughter with severe needs. We were eventually told that she probably wouldn’t see adulthood. She turned 30 this year! I have been her primary caretaker her whole life. – Mandm M.
I’ve lost quite a few jobs… The worst was the job that said I had to find him another way to get to his surgery and then told me later that same day that I had to choose between my family and my job (but they claim they are family oriented business). I walked out. There are better jobs out there that actually understand what it’s like to caregiver. – Dana J.
I quit my job when I was 4 months pregnant so that I could take care of my quadriplegic husband. Its been emotionally, financially, and physically tough on me and my family. I want to put my son in daycare part time, but can’t afford it. We live off of SSI, but still can’t afford IHHS. – Elizabeth R.I have lost 2 careers in education, a music career and a business in the last seventeen years and haven’t had an income for 4 years. – Melanie H.
Left full time teaching in 1998 to care for my parents …started a new era…lots of work…and joy. – Sheri M.
I’ve been caring for my mother since November 2011 and I haven’t worked since. It’s been very difficult financially at times. I was a 9-5 worker and haven’t really found anything that would allow me to work at nights or weekends other than a nursing facility I just started working at on the weekends to get my business up and running. – Basia M.
I look after an ex boyfriend 24/7 I am pretty much stuck to the house he is at a high risk for seizures and chokes all if given to him by feeding tube. So my life for now is gone. No friends, no family. Its hard but, no one else to do it. – Cheryl M.
I’ve been lucky as my work is understanding. That said… It’s HARD to work outside the home & be a caregiver. I question it almost daily. – Norma C.
Once he was Bed Bound over three years ago there was no way to even keep part time work… Someone to care for him would have cost more than I made at this point. It has been a financial mind field but that is as much to his loss of work as mine. We are now existing on my retirement and his disability from SS. It doesn’t go very far, so we just work at being very very frugal. – Pat F.
Still working full time 6 years in, but because of unreliable hired caregivers who come while I am at work, and no help from family, I have had to quit my 2nd (part time) job and use all my vacation and sick days to cover when they are off. I haven’t spent a night in my own home since mom got sick. I stay at her house and am there whenever I am not at work. Had to file bankruptcy and almost lost my house twice. – Dee M.
I lost a job over it. – Suzanne D.
I had to take extensive time off last year during the summer, and into the beginning of fall, when my middle son had multiple surgeries on his legs (hamstring and heel cord lengthenings, two bone grafts per foot, and femoral osteotomy on both legs). This year I will have to stay home with another child during the summer, because his private preschool doesn’t offer summer school, even though he has an IEP. I’m going to have to do extensive ABA and speech “therapy” with him as best as I can at home. – Amie S.
Yes, it makes the isolation even more extreme and worries about money grow stronger. Hoping to get back on call so that I can work when things are quiet. – Ann C.
I did quit my job to look after my mother and it was hard because I didn’t qualify for unemployment insurance because I quit for no reason according to the government and the other one was the person you are caring for had to die within 6 weeks of benefits… But we made it work for two years until mom passed away 3 weeks ago and now I have to enter back into the work force and at 55 years old companies don’t really want me. I am too young for retirement age and my husband can’t pay for everything so now I have to. – Lorie G.
About a month before my husband found out he had AFib I lost my job. Four months later we found out he had Lewy Body Dementia. I haven’t been back to work since then, largely because I took care of my husband until he died last July. Since then I’ve been dealing with my own physical problems, which occurred as a result of taking care of my husband. I am now 59 years old and I don’t think I’ll ever be able to get another job. – Beth T.
What would be the greatest help corporations and businesses could provide to caregiving employees?
We step into the caregiving role not knowing much about what it will entail and how our lives will change.
Typically we find our world shift to an unfamiliar ground. It’s incredibly difficult to remain a full-time employee when you are just finding your footing as a primary caregiver. Many caregivers quit their jobs for home-care, surrendering their main source of income. Others might be able to work from home. A staggering “73% of family caregivers who care for someone over the age of 18 either work or have worked while providing care; 66% have had to make some adjustments to their work life, from reporting late to work to giving up work entirely; and 1 in 5 family caregivers have had to take a leave of absence.” Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP. November 2009. These changes can result in stress, job-insecurity and resentment from both employer and employees. But it shouldn’t.
The reality is the demographics of the workforces are changing, facing new struggles and the only option is for the workplace to adjust. Fifty years ago, there was typically one worker in a family but now 70% of American children live in households where all adults are employed. A caregiver doesn’t have the option to forgo a job and risk financial instability, especially in the current economic climate. As the number of caregivers rises beyond 65 million Americans, our nation and treatment of its workforce compels change.
Fortunately, in the last two decades Congress has become aware of the ever-increasing number of caregivers in the U.S. and has attempted to create a balance in the workplace.
The Family and Medical Leave Act (FMLA) of 1993 allows eligible employees 12 weeks of unpaid, job protected leave so that the employee may care for an ill loved one. Eligibility is contingent on the employer’s coverage, the length of time the employee has worked at the company, and the number of employees at the company. An employee is permitted a leave of absence to care for a spouse, son, daughter or parent with a serious health condition. The leave granted to veterans’ caregivers is slightly longer. Caregivers might be able to take FMLA leave discontinuously, allowing them to adjust their workweek schedule to fewer hours or taking leave in intermittent periods of time. For long-term caregivers, this allowance is extremely helpful.
Entitlement to leave is also based on the relationship of patient and employee as well as the type of health condition requiring care. A “serious health condition” is defined by “illness, injury, impairment, or physical or mental condition” that necessitates either inpatient care or continuing treatment by a health care provider. For the full list of “continuing treatment scenarios, click here.” The patient must be a spouse, child or parent, or have an in loco parentis relationship with the employee. This means that you are eligible to time off to care for someone who was the primary caretaker for you when you were younger, regardless of legal or biological connection. You are also entitled to take a leave of absence to care for a child with whom you are in loco parentis.
While on leave, your job is protected.
Not only does your employer have to restore you to your original job (or one with equivalent pay and benefits) but also the employer cannot count your leave of absence against you in any way. Unfortunately, many caregivers have faced discrimination in the workplace based on employers’ bias. No doubt due to the changing workforce and the workplace’s inability to adapt, Family Responsibilities Discrimination lawsuits has increased almost 400% in the past decade (Family Responsibilities Discrimination: Litigation Update 2010 by Cynthia Thomas Calvert, The Center for WorkLife Law).
Employers doubt caregivers will be as committed to their work as their non-caregiver colleagues and let that prejudice affect the way they treat their caregiver employees. For example, one man was told that “he would be ‘cutting his own throat’ if he took time off to care for his ill father.” In fact, “…some employees have brought claims related to leave requests to take care of their own health problems caused by the stress of being a caregiver…” but were denied by their employer. The Family Responsibilities Discrimination: Litigation Update 2010 serves as a warning to employers. If a bias towards family caregivers impacts treatment towards employees, employers will lose trained, valuable and talented personnel.
As humans we have a duty to treat all of our fellows equally, caregivers included!
Stay updated: Take a look at the new FMLA guide and how the rights of caregivers in the workplace have become clearer.