Caregivers on the Job–Part 1, If YOU Are Your Job Problem

For Family Caregivers of Patients with Alzheimer’s or other Dementia

This blog is based on my experience as a caretaker for my parent with dementia, and the ideas I share in the book, Thirty Essential Tips to Start Managing Alzheimer’s or Other Dementia, Your Parent, and Yourself. I hope you find it useful.

CAREGIVERS ON THE JOB–PART 1

A Series on Preventing Caregiver Burnout on the Job

Part One of this article looks at ways to prevent caring for your parent from negatively impacting your ability to perform on your job. It focused on ways to fix your lack of time, support, expertise, and other things that might be tripping you up.

Part Two focuses on your on the job relationship with your manager and coworkers. It discusses communication as a means to bridge any gaps in those associations that so concretely affect your ability to produce an income and provide for your family member. These suggestions will keep them in the loop and reassure them that the company’s needs and priorities are part of your own.

Part Three of this article looks at what you need to consider when your job just cannot be made right by either improving your own performance or your communications with those with whom you work. It helps you begin to consider some ways to make a work change while the rest of your life—your caregiving life—remains in flux.

If YOU Are Your Job Problem

Jobs and Caretaking Priorities

Your job does not automatically shift its requirements, location, or other realities in order to accommodate the care of your parent. No matter what is going on at home—whether it’s snowing and adult daycare is cancelled, or your parent needs an entire day’s worth of tests at the hospital and your family volunteered you to escort him—your job is still your job and you’re about to miss it, because the work day will still begin at 9:00 A.M or earlier. You will still be expected to get up, commute to work, perform your required duties (and those famous other duties as assigned), reverse it all at the end of the work day, and prepare to do it all again the next day and the day after that. Today, or one day soon, whether it’s due to the snow or that medical appointment, you might not be there to fulfill your job duties.

Our lives usually revolved around our work days, not the other way around. When we can’t form around our work, however, when the pulls on our shirt sleeves or the tugs at our hearts have to take priority, we have no choice but to alter our jobs, either temporarily or permanently. In fact, according to AARP’s Public Policy Institute Fact Sheet, Understanding the Impact of Family Caregiving on Work, in order to cope with the heightened demands that caregiving adds to your work day, almost 68 percent of you opt to alter your work day. You arrive early or stay late, take leave, reduce work hours, switch jobs, take early retirement, or simply leave the work force[1], in order to accommodate your parent, spouse, or other family member with Alzheimer’s or other Dementia.

Priority Shifts—Informal Caregiving, Caregiver Burnout, and Your Job

A trend in caregiving, however, is causing many of us to shift our focus. More and more our lives, are beginning to revolve around our duties taking care of family members, rather than our jobs. We are becoming informal caregivers—a term used to describe non-professional, family caretakers—in record numbers. The Alzheimer’s Association reports that more than 15 million of us are now non-professional, family caregivers to a patient with Alzheimer’s or other Dementia.[2]

That position shift, from a job-centered to a caregiver-centered life, is creating a conflict between our work requirements and our family needs, between bread winning and bread serving. In addition, that squeezy-stomach feeling that you have each time that conflict rears its ugly head, that I’m-not-sure-I-can-take-any-more-of-this-rushing-between-my-job-and-my-family feeling that creeps up on you at 2:00 A.M., usually when you have an early meeting scheduled and need your rest? Well, according to the United States Department of Health and Human Services’ Office of Women’s Health[3] that feeling has a name too. It’s called caregiver burnout. Both women and men get it, and both our jobs and our lives suffer when we get it. For example, if you want to do a good job at work, but find yourself over-sleeping and showing up late, feeling or acting unprepared at meetings with coworkers, or fulfilling all of your duties beautifully but looking and feeling frazzled or fried much of time, then you need to know that that is probably it. That is probably caregiver burnout that you’re suffering, and you will likely find that either your actual job performance or your appearance at work has slacked off, probably at the same rate as your caregiver burden has increased.

Shifting with the Priority Shifters

Even experts in the field have begun to take notice of your difficulties and have begun to shift their study topics to include the caregiver, not just the patient. Organizations from the National Institutes of Health (NIH) National Institute on Aging to the Alzheimer’s Association are beginning to look at family caregivers, their work-home conflicts, and the gaps in their levels of expertise, to better understand how to best help these individuals. In fact, “in 2012, the National Institute on Aging commissioned experts to write brief papers about key knowledge gaps and research priorities in informal caregiving,”[4] under a study called Next Steps for Research on Informal Caregiving. The goal was to find meaningful ways to intervene in these in-home-based situations and make them better for the caregiver, as well as for the receiver.

The researchers, from UCLA, Johns Hopkins University, University of Michigan, University of California at San Diego, University of Pennsylvania, and Texas A&M, came from a variety of fields including: Medicine, Nursing, Gerontology, Psychiatry, Public Health, Health Policy, and Sociology. They concluded that though no caregiver gets off scot-free, it would behoove society to intervene and give you, the caregiver, whatever help you need to make juggling your job and your caregiving duties less daunting. Along with identifying those things that predict who may or may not have a harder time as a caregiver—which might help you to opt-in or opt-out of caregiving at the onset or decide how best to participate (i.e., what role to assume) in assisting your family member—they have concluded that medical and other professionals need to help informal caregivers with their levels of expertise in order to delay the necessity of a nursing home or another facility for the care receiver. In other words, professionals need to support the caregiver in knowing how to handle the daily caregiving requirements that arise when assisting a person with a progressive illness, such as Alzheimer’s or other Dementia, in order to fill the skill gap that can add to difficulties and subvert the good that comes from these family-based arrangements.

As this last point stresses, we need to be careful about talking down these informal caregiver arrangements, and deciding that the cure is to get rid of informal caregiving. Why? Because though an individual caregiver’s priority shift may be negatively affecting his or her job (or life) right now, the caregiving phase is a temporary phase by its very nature. As most sources state, Alzheimer’s and Dementia usually affects older individuals, those over 65, and usually those in the 80 years and above range. Thus, there will be a limited number of years that any of us will be cared for in this state. The job and company, however, may last for generations. The job will be there and the worker can remain there too if we think through how to help him stay and work, rather than how to get rid of him and move on without him.

In addition, the usually unpaid family caregivers are actually contributing significantly. For their families, they are sparing the family budget the cost of a paid caretaker (whether it is adult day care or respite care fees, or a home caretaker’s salary). For their communities, they are delaying the move of an elderly parent from the home they’ve known (cared for and paid taxes on) for 50 years to a nursing facility that might be at least in part subsidized by a government agency. Also, they are not overtaxing no-charge or low-charge services, such as open senior centers, senior ride-on buses, etc., allowing those in most need of these resources—those with the most critical parental or spousal care needs—to have access to them, while sparing taxpayer-funded budgets in their local communities. We need these family caregivers. Otherwise, the tab is going to be a lot bigger for all of us.

How Researchers Are Helping the Caregivers Make Successful Changes

Having considered why we need our family caregivers, researchers now want to see, among other things, whether helping increase caregiver skill levels subsequently increases the caregiver’s comfort, health, and adjustment levels; relieves caregiver burden; and improves the health and functioning of the Alzheimer’s or Dementia patient. Some studies look at improving basic physical caretaking skillsets, while other studies focus on improving the caregiver’s interaction with the Alzheimer’s or Dementia patient, such as when caregivers need to handle symptoms and behavioral issues like a parent’s elevated anxiety and confusion at the end of the day (called sundowning). You can locate information on these caregiver-focused studies by accessing the National Institutes of Health (NIH) National Institute on Aging’s Alzheimer’s Disease and Related Clinical Trials website area (www.nia.nih.gov/alzheimers/ clinical-trials) or by accessing the NIH Clinical Trials website (clinicaltrials.gov). Once there, you can either consider taking part in a study yourself or read study results and conclusions that may give you some much needed insight into both your own and your parent’s issues and increase your personal knowledge base.

One particular study, the NIH National Institute on Aging, Distance Savvy: Testing Tele-Savvy, a Distance Dementia Caregiver Education Program, which was held at the Emory University Alzheimer’s Disease Research Center from 2014 to 2015, was focused on refining and testing the online delivery of a program that intervenes by providing education on the Alzheimer’s and other forms of Dementia. It is based on an already well-established, in-person program and is specifically for informal caregivers (family and friends) of the Alzheimer or other Dementia patient.[5]

Another study, Powerful Tools for Dementia Caregivers,^[6] which is co-sponsored by the Florida Department of Health, Ed and Ethel Moore Alzheimer’s Disease Research Program, and is currently taking place at the Florida State University College of Medicine in Tallahassee, Florida, is testing intervention with a six-week psycho-educational program called, “Powerful Tools for Dementia Caregivers,” which involves caregivers attending workshops led by trained professionals, who focus on increasing caregiver knowledge and comfort and decreasing caregiver stress and burnout, including the kind that leads to problems with job performance.

What’s Next for You?

Now that we know how the researchers are helping to make the caregiver part of your life fit in better with the breadwinner part—and you know how to access their guidance and advice—it might be time to consider ways that can help yourself find that perfect (at least good enough) work-life balance.

Maybe you should consider locating some professional support that is local and easily accessible. For instance, maybe you can get training and support from a local Alzheimer’s or other Dementia organization. If you contact the Alzheimer’s Association’s toll-free number (     ), they can put you in touch with a local chapter. Many chapters have skillset workshops for caregivers throughout the year. While you’re talking to that local chapter, you could also ask about caregiver support groups. A local Alzheimer’s or other Dementia support group could provide you with a regular support system, people you can not only exchange care ideas with, but also people you can call after a tough evening with your parent. People who can probably relate to your problem better than a non-caregiving friend and provide a knowledgeable reprieve from the strain of the day. That way, the last thought in your head as you try to drift off to sleep is a joke you shared with him or her, and not a stressful moment trying to get your parent to eat something.

Maybe you should find a way to add more time to your day. As the United States Department of Labor’s (DOL) publication, Need Time? The Employees Guide to the Family and Medical Leave Act, says “In your time of need, sometimes you just need time.”[7] If you think adjusting your job would improve your ability to continue your job and care for your parent, then consult your Human Resources Office and ask what schedule changes are available to you under either an internal policy the company or organization has or under the federal Family and Medical Leve Act. To prepare for this visit, try reading any materials your company provided to you when you first began work (and that they probably continue to make available on the company website). Also, read the Need Time publication mentioned above. You can find it on the DOL website at www.dol.gov/whd (the “whd” stands for wage-hour division) or call 1-866-487-9243 for more information. The publication tells you how the legislation works if you’re a corporate employee or a school teacher, a flight attendant or a seasonal worker. That way you’ll know what you are likely to receive from your company in terms of access to an alternative work schedule (and whether what they offer you is indeed fair and right under the law) and how that could assist you by giving you the time you need to care for your parent and maintain good performance on the job.

Maybe you need to consider that it’s not just your parent’s hands-on care that’s an issue, nor is it your need for more leave time from work. Besides both of those things, there may be changes on the home front that could make a huge difference for you at work. Just think of things you do each day before or after work: the grocery shopping, the fixing dinner from scratch each night for your parent and then having to prepare possibly a separate meal for yourself, doing household chores, sorting through the household bills, taking out the garbage. You can probably see now that you need a system of support if you are to continue to be your loved one’s caregiver, especially if you hope to continue to do it well. Maybe it’s time for a service like Meals-on-Wheels to deliver special meals for your parent or for Diets-to-Go to or a similar service fix a well-balanced and nutritious meal especially for your pre-diabetic parent (remember to always have any such meal plans are pre-approved by the patient’s doctor—no exceptions). Maybe you can order the Ensure or Boost from CVS.com or WalMart.com, or Walgreens.com or the incontinence products from like medical supply house, rather than making that trip to the store. Maybe you can even order those groceries from your local supermarket and have them deliver to your door. Many grocery stores, drug stores and pharmacies, superstores, department stores, and even independent stores across the country now provide delivery service. Your helping hand might be only a click on the Internet or a phone call away. Look up your local stores online (use the library if you have to) or a telephone book and get the help you need. You might also consider some of the tips that others who have been down this road have used. In my eldercare book, Thirty Essential Tips to Start Managing the Alzheimer’s or Other Dementia, Your Parent, or Yourself for instance, there are tips on figuring out how to handle home maintenance, including ordering groceries and various eldercare supplies (Tip 7), use technology to help your parent (Tip 5 and Tip 6), manage caretaking with siblings and other relatives (Tip 27) or even help even when you have thoughtfully opt-out of hands on caretaking (Tip 26) should you decide that you want to or need to do so. This book, as well as many other useful guides, are out there. Check out Amazon.com to find my book and locate others.

Maybe you need to try new tactics with your family as well by talking to these people who inhabit that currently pressurized space with you at home and sharing your concerns. They probably love you and they might actually help if you allow them to see how it’s affecting you. For example, let’s say your husband is not the fire-walk-with-me type. Moreover, let’s say he is unlikely to understand or to be sympathetic to your feelings of being overwhelmed. He sees himself as working just as hard, if not harder than you, and being able to handle himself and his life just fine. Plus, he’s got his own problems (living with his mother-in-law, for instance). There still may be hope to gain his assistance in freeing up more time for yourself and your life. Instead of nagging him over and over to help around the house, you can simply say that you will spare him the long talk if he will just agree to load and unload the dishwasher every day. You can add that he doesn’t have to do anything else except that. Sometimes this is just the low wattage kind of conversation that can get some people helping in areas where you need relief. In the end, you get what you need without an hour-long conversation or argument and he gets more peace and quiet. Not a bad trade. If there’s no spouse, try this technique with your kids or whomever shares your life, and needs to share some of the responsibilities.

Conclusion

It is possible to have a job and care for your parent. You just need to work at it, but don’t work hard, work smart. Use the rights you have to Family and Medical Leave, where appropriate. Use the access you have to expert studies that are being done specifically to assist you, the family caregiver. Use the many convenience services that the Internet has made possible—from ordering groceries to ordering incontinence products. Especially in the Alzheimer’s or other Dementia community, we need you family caregivers who bring not only hands-on care, but a loving presence to the patient. If this is the course you have chosen—being a family caregiver to a patient with Alzheimer’s or other Dementia-then use this article as a way to help you. At some point, the homecare may shift to professional care outside the home. Until then, make their care and your life as good as it can be.

For More Information

For more for caregivers, visit the Alzheimer’s Association (Alz.org) website’s Alzheimer’s and Dementia Caregiver Center. The information and articles there will help you realize just how normal it is to have problems combining work and taking care of a parent with Alzheimer’s and Dementia. Not only that, but it will connect you to resources you may not see elsewhere. Also, consider reading my book, Thirty Essential Tips to Start Managing Alzheimer’s or Other Dementia, Your Parent, or Yourself. As noted above, it has additional suggestions or ways to start managing your life rather than being managed by your caretaker role.

End Notes

• [1] Understanding the Impact of Family Caregiving on Work, Lynn Feinberg and Rita Choula, AARP Public Policy Institute, www.aarp.org/ppi, Fact Sheet 271, October 2012 (accessed March 10, 2018) https://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2012/understanding -impact-family-caregiving-work-AARP-ppi-ltc.pdf.
• [2] 2017 Alzheimer’s Disease Facts and Figures, Alz.org, (last updated February 1, 2018), (accessed on February 20, 2018), https://www.alz.org/facts/.
• [3] A Fact Sheet from the Office of Women’s Health: Caregiver Stress, United States Department of Health and Human Services, Office on Women’s Health, womenshealth.gov, (access February 16, 2018) https://www.womenshealth.gov/files/documents/caregiver-fact-sheet.pdf.
• [4] Bianchi, Suzanne, Gitlin, Laura N., Lango, Kenneth M., Lin, Pei-Jung, Litwin, Howard, Mousbach, Brent T., Naylor, Mary D., Stevens, Alan B., National Institutes of Health (NIH), National Institute on Aging (NIA) (www.nia.nih.gov), Next Steps for Research on Informal Caregiving, 2012, (accessed March 25, 2018) https://www.nia.nih.gov/sites/default/files/2017-08/gerald-summary_11-21-14_0.pdf .
• [5] Kenneth Hepburn, Ph.D., et al, National Institutes of Health (NIH), National Institute on Aging (NIA), Emory University, Distance Savvy: Testing Tele-Savvy, a Distance Dementia Caregiver Education Program, (2015), (accessed March 25, 2018), https://www.nia.nih.gov/alzheimers/clinical-trials/tele-savvy-distance-dementia-caregiver-education-program .
• [6] Terracciano, Antonio, PhD. National Institutes of Health (NIH) National Institute on Aging (NIA), Florida State University College of Medicine, Tallahassee, Florida. Powerful Tools for Dementia Caregivers (2018), (accessed March 19, 2018), https://www.nia.nih.gov/alzheimers/clinical-trials/powerful-tools-dementia-caregivers .
• [7] Need Time? The Employees Guide to the Family and Medical Leave Act, United States Department of Labor (dol.gov), (accessed on February 21, 2018), https://www.dol.gov/ fmla/employeeguide.pdf .

Keywords

Family caregiver, Informal caregiver, dementia caregiver, caregiver stress, caregiver burnout, Alzheimer’s caregiver, Alzheimer’s, dementia

References

• Alzheimer’s Association, Alz.org. 2017 Alzheimer’s Disease Facts and Figures (last updated February 1, 2018). https://www.alz.org/facts/ (accessed on February 20, 2018).
• Bianchi, Suzanne, Gitlin, Laura N., Lango, Kenneth M., Lin, Pei-Jung, Litwin, Howard, Mousbach, Brent T., Naylor, Mary D., Stevens, Alan B. National Institutes of Health (NIH) National Institute on Aging (NIA). Next Steps for Research on Informal Caregiving. (2012). https://www.nia.nih.gov/sites/default/files/2017-08/gerald-summary_11-21-14_0.pdf  (accessed March 25, 2018)
• Feinberg, Lynn and Choula, Rita. AARP Public Policy Institute (aarp.org/ppi) Fact Sheet 27, (October 2012). Understanding the Impact of Family Caregiving on Work. https://www.aarp.org/content/dam/aarp/ research/public-policy_institute/ltc/2012/understanding-impact-family-caregiving-work-AARP-ppi-ltc.pdf (accessed March 10, 2018).
• Kenneth Hepburn, Ph.D., et al. National Institutes of Health (NIH), National Institute on Aging (NIA) (www.nia.nih.gov)., Emory University. Distance Savvy: Testing Tele-Savvy, a Distance Dementia Caregiver Education Program. (2015). https://www.nia.nih.gov/alzheimers/clinical-trials/tele-savvy-distance-dementia-caregiver-education-program (accessed March 25, 2018).
• Terracciano, Antonio, PhD. National Institutes of Health (NIH) National Institute on Aging (NIA). Florida State University College of Medicine, Tallahassee, Florida. Powerful Tools for Dementia Caregivers. (2018). https://www.nia.nih.gov/alzheimers/clinical-trials/powerful-tools-dementia-caregivers (accessed March 19, 2018).
• United States Department of Health and Human Services (HHS.gov). Office on Women’s Health (womenshealth.gov). A Fact Sheet from the Office of Women’s Health: Caregiver Stress. https://www.womenshealth.gov/files/documents/caregiver-fact-sheet.pdf (access February 16, 2018).
• United States Department of Labor (dol.gov). Need Time? The Employees Guide to the Family and Medical Leave Act. https://www.dol.gov/ fmla/employeeguide.pdf (accessed on February 21, 2018).