If you missed our live online chat with Amy Goyer, an AARP family and caregiving expert, read the transcript of the conversation.
Comment from Sheila Clayton: I have been a caregiver for my husband for the past year due to a spinal cord injury. I have been off work for the past six months to care for him and am contemplating leaving my job. My reasons are due to the cost of caregivers, because I was basically working to pay the caregiver. I have a fulfilling position working for the federal government and it is a hard decision to leave. I am 53 years old and concerned about my benefits. What have you witnessed about caregivers leaving their jobs to work part time or stay at home? Any advice is appreciated.
Amy Goyer: Sheila, I can empathize with your dilemma. It's important that you consider the long-term as well as the short-term financial implications.
If you leave your job, you'll lose benefits. What is the value of those benefits now and in the future? If you leave your job, what will that do to your pension and other retirement benefits, which over a lifetime may be more valuable? What other benefits are there to you to be working — your own fulfillment, identity, socialization, intellectual stimulation, etc.?
Instead of leaving your job completely, could you change positions with your current employer? Cut back your hours while still getting benefits and building your pension?
I'd suggest you talk with the human resources and retirement planning staff. They can help you calculate and decide the best option for you now. Remember, you need to take care of yourself or you won't be able to take care of your husband — and that includes financially.
Comment from Laura: I feel like I have two full-time jobs — my full-time paid job and taking care of my mom. I'm exhausted all the time and I'm not sure I can keep this up. I think I need to make changes in my paid work, but I'm so tired I can't even think about what or how. What are options I should consider?
Amy Goyer: Laura, I feel the same way! It can be overwhelming and hard to even stop and take an objective look at your situation. You are one of the 42 percent of U.S. employees who have cared for an older relative or friend in the last five years. In fact, 49 percent of people in the workforce expect to provide care in the next five years.
So, here are some options to think about. (These are all covered in more detail in my new free AARP ebook, Juggling Work and Caregiving.)
Change your work hours. Ask for more flexible hours, split shifts or a compressed workweek, or propose a job-sharing schedule.
Telecommuting allows you to work from home or some other location and free up time for caregiving duties. Even if you only telecommute part of the week, that might help your situation. Would a change of work location help you? Time spent commuting can be alleviated if your work is closer to your mom. You might more easily be able to pop in during your lunch hour or after work that way.
Take leave. Perhaps you could take more time off work. Find out what your employer offers in terms of leave policies, including how you can use your vacation, sick leave, personal leave, etc. Some employers even offer caregiving leave. The Family and Medical Leave Act (FMLA) might be an option for you. Find out your employer's policy about that.
Above all, take care of yourself, Laura. You sound like you are on the way to burnout, and you won't be able to help anyone or get your work done if that happens.
Comment from Jill: I'm cutting back my work hours because caring for my mom, who lives with me, just takes too much time. But I'm worried about my financial future.
Amy Goyer: You are right to be concerned. Research indicates 19 percent of retirees stopped working earlier than planned because of caregiving, with significant loss of income: Female caregivers age 50-plus who stop working to care for a parent lose an average of $324,044 in wages and benefits over the course of their lives; male caregivers age 50-plus lose an average of $283,716.
You might consider meeting with a financial planner to do some forecasting and determine the best way to care for your mom but also ensure your own financial security in the future.
Comment from Arlene: I am working two part-time jobs and taking care of my mom and dad AND my two kids and my husband. I don't know anyone else in this position. I feel like I'm the only one doing this!
Amy Goyer: Arlene, so many of us feel alone! Actually you are one of 42 million caregivers on any given day in the U.S., and about three-fourths of us are working at some point.
Comment from JDM: Should I tell my employer about my situation as a caregiver? I'm always told to keep personal and work issues separate, but caregiving is affecting my work.
Amy Goyer: While every job is unique, keeping your employer apprised of your situation is usually a good idea. If you're missing deadlines, coming in late or using a lot of leave, your supervisor may wonder why or simply assume you are not focused or committed. It's better for your employer to know the challenges you are facing and understand that you are, and want to continue to be, a valued employee.
Here are some tips for approaching your employer:
Consider talking with your human resources or personnel manager about any company benefits and policies that might help you as a caregiver.
Schedule a face-to-face meeting, if possible, with your immediate supervisor to explain your caregiving situation.
Be professional, sincere, calm and confident.
Affirm your commitment to your job.
Explain the basic facts about your role as a caregiver, including the unpredictability of your situation. You probably won't want to go into all the details; you just want to convey the gist of your responsibilities.
Agree on how you will communicate changes in the future.
If you are experiencing a specific challenge, suggest solutions, such as a flexible work schedule or leave of absence, and ask for suggestions as well.
Work out an agreement with the understanding that the situation could change. Put your arrangement in writing and make sure your human resources or personnel office has a copy or knows about it.
Keep your employer apprised of changes as they occur, and update your agreement as needed so everyone is clear about roles and expectations.
Comment from Twitter user @CBPotts: It's very tricky to balance work with caregiving at a distance. Any tips for those of us who live far away?
Amy Goyer: I go back and forth between being a long-distance caregiver and actually living with my parents. It's tough being so far away. You might consider telecommuting for even part of your work time. Before I moved to Phoenix to help my parents I did that intermittently.
You might also consider adjusting your work schedule, such as a compressed work schedule. I worked four longer days and on the fifth day I was off work so I could make phone calls, manage finances, etc.
Be sure to take advantage of technology: You can video chat at your loved one's doctor appointments (Skype, FaceTime, etc.), and set up technology in their home as well. Here's a video I did on "smart homes" that might be interesting to you!
Check out the AARP Caregiving Resource Center for more help with long-distance caregiving.
Comment from David S: On a good day it is challenging to balance work and caregiving. Do you have any recommendations for caregiving where alcoholism overshadows the venue?
Amy Goyer: You're right: It's a huge challenge, and when other issues complicate matters it can be overwhelming. You might contact Al Anon, an organization that supports families of alcoholics. See if there is a local support group you can go to. It will have good suggestions for you about how to cope.
And for those of you who have other overshadowing family issues to deal with, please remember to get help with those issues. It's hard to juggle work, caregiving and other family issues all at the same time.
You can reach out for family counseling, family mediation, support groups and other types of help.
Comment from Kathy B: How do I talk with my boss about the fact that I need to have a more flexible schedule? I'm feeling pinched and don't want to make myself vulnerable as someone who doesn't need the job.
Amy Goyer: Kathy, you are wise to proceed with caution. See my comments above to JDM about how to talk with employers. Above all, reaffirm your commitment to your job and your desire to keep working and meet your employer's needs while also living up to your caregiving responsibilities.
And if you have examples of how a flexible work schedule has worked out well for other employees or in other companies, that might help. You can also talk first with your human resources department to get their input and understand company policies. Hope it works out for you!
Comment from Mary: How might I get paid as a caregiver if I need to cut back hours on my job?
Amy Goyer: We get this question a lot! Many people have to cut back on work or quit jobs to care for loved ones, but they still need an income.
Your family member could pay you to be a caregiver. But sometimes money is tight. Here are a few funding sources that might help:
Veterans' benefits: Veterans who were on active duty during wartime and meet other asset and expense requirements may be able to receive Veterans Aid and Attendance or Housebound benefits to help with long-term care. These funds can be used to pay for caregiving services. Vets may also receive health care as well as special funds to pay for a limited amount of respite care.
Long-term care insurance: If your loved ones have long-term care insurance that covers home care, those funds might be used to pay you as their caregiver.
Medicaid: In some states, Medicaid funds can be used to pay family caregivers to provide care at home. This is more rare, though.
Also find out about paying taxes: Check with an accountant and do your homework. There are new laws going into place that might affect this. If you do get paid as a caregiver for your family member, be sure to have a written agreement outlining all the details such as pay, schedule, time off, responsibilities, etc. Remember that your loved ones may be able to write off caregiving expenses on their taxes. Also be very aware that you are a paid professional. Take the job seriously: It may be family, but you are doing a very important job in caring for them.
Next page: Part-time opportunities for caregivers. »
Comment from Elisa: Is there a good site for jobs that offer part-time opportunities? I'm thinking this may be good for me to do for myself, as I need the money and a break.
Amy Goyer: Elisa, that's a great question. Sometimes part-time work is the best way to go for working caregivers. You can check out AARP's job search site for some possibilities.
If you qualify, you might find work through the Senior Community Service Employment Program. AARP Foundation has this program, as do several other community organizations. Or check out the Department of Labor website and its one-stop employment centers.
Comment from Monica: My current job doesn't support me much as a caregiver. I'm considering changing jobs to something that I can balance better with taking care of my aunt. What should I look for in a new employer?
Amy Goyer: Employer support for caregivers really varies. You are wise to take a look at policies before you take a new job. Here are some things that might be offered:
Employee Assistance Program (EAP): Some employers offer employee assistance programs to help employees with personal issues that might otherwise affect their work. Services might include short-term counseling, information and referrals to services.
Caregiver support groups: Some employers offer caregiver support groups that meet on-site during lunch or after working hours. They may provide a trained facilitator, speakers, a place to meet and refreshments.
Counseling benefits: Does your health insurance include mental health support, therapy or counseling? These may give you valuable support and guidance to navigate the caregiving journey.
Information and referral/assistance: These services might include caregiving fairs with a variety of local eldercare and other types of services, lunchtime seminars, printed materials, access to websites with targeted information and a call center.
Legal assistance: If your employer offers discounted legal services as part of its employee benefits package, you might get help with powers of attorney or other legal issues related to caring for your loved ones.
There are more resources in my book, Juggling Work and Caregiving.
Comment from Guest: I'm having trouble focusing at work. Between helping Mom, taking care of the kids, etc., I'm exhausted and I can't concentrate at work sometimes. I need my job, so I can't afford to get fired. Help!
Amy Goyer: It's no wonder you are having trouble focusing! I always say sleep deprivation is the biggest enemy of caregivers because it robs us of our ability to cope (and focus!) It's good you are noticing this and willing to do something about it.
This is such a big issue — caring for ourselves as caregivers. I devoted an entire chapter to this in my book. I suggest specific ways to build in things that lift you up, help you get rest, reduce stress and rejuvenate you.
For example, first off: Acknowledge your emotions. Caregiving is an emotional roller coaster, and you add in all of those other things and it's really overload. You'll feel anger, frustration, fear, grief, sorrow, joy, elation ... the entire gamut of emotions. But this range can be draining mentally, emotionally and physically.
A few tips: Know your best outlets. What fills you up, makes you happy, helps you express yourself? Exercise, journaling, talking to a friend, doing something that has NOTHING to do with caregiving, like going to a movie or volunteer work or using your creativity?
Also, maintain your own identity. You may be so lost in your roles as caregiver, worker, mother, wife, sister, etc. Keep up things that make you feel like you. I have often felt this way — and I actually find that work helps me maintain my own identity.
Be sure to watch your health. When you are on overload a simple cold can throw you off balance and hinder your ability to focus at work. Get plenty of the basics: sleep, good nutrition, exercise. Keep up with health screenings.
Be practical. Set realistic boundaries on what you can and cannot do. And get help: If you're feeling this way, maybe some help for YOU could ease things. You may want to provide the help for your mom, but maybe you could pay someone a bit to help you keep your house organized, clean, etc. I have a concierge who helps me so much — changed my life as a caregiver and worker!
Good luck. And remember, even short breaks like taking a walk around the corner, having a cup of tea or coffee, standing up and stretching — these things can help you refocus at work.
Comment from Dee: I own a business and I'm considering ways to better support the majority of my employees who are now caring for aging parents. What are some options I should think about?
Amy Goyer: Needs assessment: Employers may offer the free or discounted services of an individual or agency trained to assess your loved ones' situation and home environment and to make recommendations.
Geriatric care management: Some employers offer the free or discounted services of a geriatric care manager for a one-time consultation, on-call advice and support, emergency intervention or ongoing services. A geriatric care manager can assess your loved ones' needs and your family resources, help you create a caregiving plan and monitor your loved ones' care.
Backup care: Some employers offer discounted backup care for employees who have a temporary breakdown in their normal care arrangement so they can still go to work.
Help with insurance paperwork: Some employers have staff that understand insurance, Medicaid and Medicare, and will help guide employees and their families through the complicated maze of paperwork.
Discounted professional care services: Some companies provide vouchers, subsidies or discounted services for the people their employees are caring for, such as for adult day services, professional caregivers or respite services.
AARP: We're out of time. Amy, can you share with us some go-to resources all working caregivers should bookmark?
Amy Goyer: I want to make sure you all know that my new ebook, AARP's Juggling Work and Caregiving, is available FREE.
I also want to point you to my Taking Care videos on the AARP YouTube channel. Here is the link to one on working caregivers, and you'll find more videos there.
And be sure to check out the AARP Caregiving Resource Center and the Eldercare Locator, where you can also find your local Area Agency on Aging — a GREAT local resource — and other key local supports.
Happy National Family Caregivers Month, and thank a caregiver today at www.thanksproject.org. We all need some appreciation and validation of the care we are providing!
AARP: Thank you for sharing your wisdom with us, Amy. Everyone, download her FREE ebook. FREE! Also, if you still feel like talking, we have a caregiver online discussion group that is also free. Have a great rest of the week, everyone. Please follow us on Twitter @AARPfamily and #caresupport.
Amy Goyer: Thanks all! Take care, and let me hear from you on my blog! And be in touch with me also on Twitter @amygoyer and Facebook amygoyer1.