QUESTION: I have been living with my parents for the past three years as caregiver. My dad is a stroke survivor and diabetic, and my mom is a cancer survivor who is on lifelong chemotherapy pills. For the past three years my long-time boyfriend and I have lived rent-free at my parent’s address, but managed all aspects of their care such as prescriptions, doctor appointments, grocery shopping, most of the meal preparation, and indoor and outdoor maintenance. I also work 40 hours per week as a medical secretary. I think the rest of my family believes that my living here rent free is payment enough for my caregiving. I am beginning to doubt this. I have also worried that once my mother comes home (she was recently hospitalized), she may need someone to care for/assist her all the time, at least temporarily. I have considered taking Family Medical Leave for as long as possible but since it would be unpaid without insurance, is it reasonable to ask for payment (beyond living rent-free)? I love my parents immensely and want to continue to take care of them but I don’t want to be taken advantage of. All of this is beginning to take its toll on me and is causing increasing friction with my siblings.–Letitia
DEAR LETITIA: The real question is: Are your parents both sound in mind enough to understand what you are asking? What do they think about the idea? Are they able to afford to comfortably compensate you for your caregiving work? If you have their buy-in, then it is time to move on to your siblings to be sure they understand the solution you have planned with their blessing. Your challenge is educating your siblings about the tremendous physical, mental, emotional and spiritual toll caregiving can take on a family caregiver. Under no circumstances does living rent-free equal the daunting task of full-time caregiving. And in your case, you are responsible for not only one parent, but two. In order to have more time to devote to caregiving, applying for a Family Medical Leave would be highly desirable for you. Make an appointment to talk with the human resources person at your place of work. He or she will be able to answer all of your questions. In the meantime, if you decide to take the 12 weeks off, your siblings must be informed that this precious “free” time comes with strings, mostly financial. Again, it is not unreasonable for you to ask for reimbursement to help you cover your expenses. One of the best ways to convince your siblings that your time is worthy of a salary is to contact caregiving organizations in your area. Provide the organization with a list of the needs you fulfill on a daily basis, and ask for a quote to have a caregiver onsite full time to care for both parents in a manner comparable to what you provide. You might also include some facts and figures from assisted living facilities in your community. Hopefully, your siblings will see that not only are your parents receiving very personalized, loving care, but also that your compensation is less than if they had to hire a full-time caregiver to do the job you are doing so well. I hope they will be able to value your time and caregiving efforts. You are to be commended for your firm, personal boundaries. There is a Caregiver’s Bill of Rights available to download free of charge at www.compassionfatigue.org. You might want to share the document with your siblings. Also, congratulations on your choice of what appears to be a kind and supportive long-term partner. My guess is that between your skills, talents and teamwork, both of you have made an extremely difficult caregiving effort look easy.
Patricia Smith is a certified Compassion Fatigue Specialist with 20 years of training experience. As founder of the Compassion Fatigue Awareness Project© (www.compassionfatigue.org), the outreach division of Healthy Caregiving, LLC, she writes, speaks and facilities workshops nationwide in service of those who care for others. She has authored several books including To Weep for a Stranger: Compassion Fatigue in Caregiving, which is available at www.healthycaregiving.com or Amazon.com.