What Happened When I Told My Boss about Caregiving

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According to the United States Center for Disease Control and Prevention, approximately five million Americans live with the medical diagnosis of Alzheimer's disease. The American health care system has the expectation that a family member will provide the primary care for those individuals affected by Alzheimer's disease.

However, the implicit expectations of family caregiving lead to additional employment challenges that caregivers face when tasked with providing primary care for relatives with Alzheimer's disease. One of the immediate tasks for full-time caregivers should be disclosure. Disclosure means not only letting family members know about your decision to be the caregiver, but also disclosing your decision to your employer. Why is your employer a part of the disclosure? Because if you're going to be a caregiver and maintain your regular employment, at some point those two roles will intertwine.

When my father was first diagnosed with Alzheimer's disease, I informed my employer that I would be working with my mom and brother to help take care of my father. I wanted my employer to know that there would be doctor's appointments and other unscheduled personal occurrences with my dad that may require a need for me to be absent from work.

The initial response from my manager seemed to be supportive and empathetic. However, shortly afterward I was informed that I needed to use personal time off and complete Family and Medical Leave Act (FMLA) forms for the days that exceeded my vacation allowance. Also, it was implied and not specifically stated that too much time off would negatively affect my annual performance review. I was also advised that a leave of absence may be in my best interest if things got progressively worse.

Between my emotions of the diagnosis of my father's disease and the implication that my current employment could be at risk for needing time off to help care for my father, I felt that it would have been better served if I had not said anything at all. My thoughts were that my employer was being punitive towards me because I made a decision to support my family at a critical time in our lives.

During the final seven years of my father's life, I was able to take of time as needed without repercussions from my employer. Dividing up some of the responsibility between me, my brother and our mom made things easier for me. Although my situation resolved without loss of employment, there are many other caregivers that choose to remain employed and things don't work out quite so well.

As Alzheimer's disease progresses in the patient, a caregiver is less likely to engage in more challenging workplace activities or accept additional roles of responsibility, promotions or relocation opportunities. This type of disconnection from the work environment can sometimes cast a doubt on the caregiver's commitment to their employment. During my father's illness, I turned down promotions because I knew I could not fulfill the time commitments.

Research has demonstrated that 66 percent of Alzheimer's caregivers take time off from work to provide the support needed by the relatives suffering from Alzheimer's disease. This data reflects the need for the caregiver to share their commitment between work responsibilities and caregiving responsibilities. In some instances, working caregivers must abandon the older adults for whom they provide care because they cannot afford to be away from their employment responsibilities. The alternative is that the working caregiver must make adjustments to their work schedule and endure whatever challenges or losses arise as a result of their decisions.

Although the implications from my employer seemed a bit harsh, I do understand that they still have an organization to run and they are obligated to the other employees of the company and the stakeholders. It is my hope that the policies and laws will eventually change to make things more amenable to working caregivers.

Dr. Keith Washington

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Dr. Keith Washington understands the challenges facing working caregivers. His book, “Caregiving Full-Time and Working Full-Time,” aids readers in understanding and managing the role of working full-time while caring for a loved one with Alzheimer's disease.

Caregiving and Working Full-Time

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50 Comments

As a co-worker covering for a caregiver: please let us know in advance when you will need time off. I have a co-worker who for the past year has had partial days or full days or full weeks off for caregiving. Most of these were preplanned treatments etc and by giving the remaining 2 of us advance notice - we were able to juggle the priorities. What was hard was the last minute emergency out of the office and getting surprised by an urgent request or something that wasn't finished on time and we had to drop what we were doing to cover. So my coworker is a good example of being grateful and considerate to those covering for you - help us help you: advance notice where possible, organized desk so we could find information, asking us what he could do to make this better for us to cover for him, and occasional doughnuts on Monday mornings! This year has been a roller coaster for him and we try to help and sympathize. He has made all of this better by being considerate of us too.
twocents, you bring up a very valid point! ABSOLUTELY people with children get WAY more slack at the office (in general) than caregivers with aging parents. Furthermore, unmarried people OFTEN seem to get penalized as well. I used to end up working overtime because a coworker often arrived late, never stayed the extra 20-30 minutes she was late at the end of the day or stayed to finish a project, because she "didn't like the element on the train" that came 30 minutes later and constantly cited that she had to leave by 4:30 every day to pick up her child from day care. (Her husband worked local to the daycare and was off work long before the 7 pm deadline to pick the child up). I have no problem working hard or pitching in when needed; however I DO have a problem with the assumption that I have no responsibilities or life outside of the office just because I don't have kids. Single people are also often penalized when it comes to corporate events. Example, "family picnic" for the firm I work with: Married people with kids can bring up to 5 guests; single people are allowed to bring one "friend".
We need more doctors who can do in-home visits. You can get this service if you are in a long-term care facility, but not everyone who needs it is in LTC.

Taking my mother to a doctor's office just a few miles away would end up being a 4-6 hour interruption in the day. Not something I could squeeze in over my lunch break. I had to show up very early to get her up, dressed, fed, medicated, and out the door. She could no longer handle the concept of being ready to go on time, or that the doctor wouldn't just see her whenever we show up. It was worse than dealing with a toddler because she would fight me every step of the way. Every step just took so long to do. I would be flat out exhausted by the time we got to the doctor's.

After the visit was over, she would want to run errands and have me just drive her around to sight-see, even though I had reminded her all along that we couldn't do that this time. (You can't "remind" dementia away.) She would become angry when I couldn't because I needed to report back to work. Every single time, she would "throw me out" of her place in a temper tantrum. Now I'm physically exhausted and emotionally wrung out.

Before mom moved into the 24/7 skilled nursing care unit, I had used up every single bit of time off I had that year on her plus 60 overtime hours I'd earned. We had no family vacation weekend that year and I did not have time off for our own doctor appointments and care needs. Under these circumstances, you go in to work sick because you have no choice.

Having mom's care needs escalate wasn't desired - nobody wants to see someone decline, but when she did move into the care unit and then memory care, more of the medical activities took place on-site, which meant I didn't have to take time off for it anymore and could start re-accumulating - slowly - time off.