if you know three people, one of them is probably a family caregiver

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.

Lauber Rick - On Bench with BookRick Lauber

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

Adrienne and Richard at the 1st Annual National Caregiving Conference in Chicago

Richard Lui

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.

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

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  1. I honestly don’t know how I do it….good days bad days emotional roller coaster days I know with the earth angels god has put in my path I couldn’t do “it”

  2. Obamacare
    Hopefully that will change.

  3. I have to work. I’m young and I have to plan for my future. Plus like Rusty said, I gotta have a home and food to eat. And make sure my mom has that too.

  4. I couldn’t do it any longer. Had to retire early. Now I have to pay for my own Health Insurance that’s costing me almost $700. A month.

  5. We worked and did our best….❤️❤️

  6. I suppose you can be a part time cargeiver while working. I so wish I could work, we live on peanuts.

  7. Impossible to work when you care for somebody 24 hrs a day. Some people have no choice but to survive on the pittance we get. Its through no fault of our own.

  8. Of course I work. I like to eat and have a roof over my head. No one else is going to provide that

  9. I had to stop working, 24/7 is the need I fill so cannot tell you however I can tell you that means you have income and an identity!

  10. I can’t work and be a caregiver at the same time either, so I thought, but when bills piled up and the disability didn’t cover the cost of living, i was forced to back to working. Not easy at all! At this rate, I will most likely die from exhaust, sadness, and isolation before my husband. Death can be a blessing in a way: for I have life insurance, hubby doesn’t. It will pay for his care.

  11. My boyfriend helped me out with my mom by watching her overnight until the caregiver came in the next morning. And I had FMLA given to me on my job.

  12. I worked part-time for a while; but for the last five years with Mom, I don’t think I ever had more than three consecutive hours of sleep. Even though taking care of her was less taxing than the work of many caregivers, being on 24/7 alert to her needs and safety takes its toll. God bless those of you who care!!!

  13. Why are these people SMILING?? Do not niormalize this…whose side are you on?

    • Thank you. Propaganda to manipulate us into guilt.

    • because of the photo I did not read the article..

  14. The average nursing care facilities for people with Alzhiemer’s is So expensive that even if they qualified for Medicaid it only pays less than half for nursing home with a memory care unit. The average cost is $3000 to $6500 or higher! Then the care they actually get is not as good as most people’s pets! The neglect & abuse is horrific all throughout the USA! Not to mention that one can’t even begin to get any help what so ever until Every Penny they have worked So Hard their whole lives for is depleted! After any savings if one has any is gone the nursing homes have a right to not except Medicaid. And you have to remove your loved one. Most people think Medicaid will pay everything but in most cases they will only pay for a very small portion! In most states there are very few nursing homes that have a memory care unit! And like I said if they do it costs thousands!!!

    • Carol Wright yes depending on where a person lives it can easily be $10,000 & if a person finds one for anything less than $6000 it’s a dump! It’s just not right!

    • Medicare pays nothing for long term care, only Medicaid does that. Two different things entirely. To qualify for Medicaid, the recipient/victim of the system must have gotten to the point of bankruptcy to qualify….and even then they will only be accepted into extended care facilities if they have “Medicaid beds” available. It’s a deplorable and infuriating way to run a healthcare system for our greatest generation, that’s for damned sure. I’m dealing with this with my mom right now, and I’m so frustrated I could eat nails.

    • Yes you are right I meant to say Medicaid. I just went through it with my mother. It has had me VERY Upset!!! God Bless you for what you are doing for your mother. We only had two places that even had memory care units to pick from & before my mother could even get Medicaid she would have to deplete every penny she had worked so hard to save. Mom cleaned houses, & drove a school bus for 30 years. She had bought a few stocks so she would have something to leave her children when she passed. Witch we would gladly use for her care. It’s just so sad because she had told me when she first found out she had Alzhiemer’s she told me how she had worked so hard to buy these stocks to leave all of us! She knew that I would take care of her but the last year of her illness became So unsafe for her unless I stayed awake to watch her all night! My siblings that would not help me were pushing for me to put her in a nursing home. I put them off as long as I could trying to keep her at home. It took a toll on my health & I became very ill & had to give in to everyone’s demands. So found the Best memory care facility here. It was right at $6000 a month. She was only there two weeks & passed away. I would give anything if I hadn’t put her there! I miss her more than I can find the words to tell you!!! I pray that God will help you with being able to help your mother. I understand what you are going through

  15. I work the night shift so I can make money to pay the bills at home.

    It’s works for me cause my mom’s medication causes her to sleep through the night. And this way I have the entire day to care for her.

    But this means I get very little sleep. I have a Fitbit and it says on average I get about 5 hours of sleep a day but it’s not all at once. A few hours here and a few hours there when I can get it. Some days I’m lucky and might get eight hours.

    No wonder caregivers are more prone to get sick and suffer from exhaustion. We just aren’t getting enough sleep somedays

    But I make this sacrifice cause I love my mom and it’s not her fault she is suffering from a severe mental illness.

    • You are So right! Most caregivers are Lucky to get 2 or three hours of uninterrupted sleep! People don’t realize that or how much caregivers go through!

  16. I am not sure how one can maintain both unless it is a low level of caregiving. There is not compensation that I am aware of in Texas.

  17. Colorado has paid caregiving through Medicare and Medicaid

  18. Is that clip art or your actual staff? They look too happy and healthy(and all young except the gentleman standing) to be convincing as primary family caregivers.


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