Washingtonians for a Responsible Future

I am the primary caregiver for our daughter, who is on the autism spectrum, and also cared for my mother when she was alive. I left the workforce when it became clear our daughter’s needs were greater than anticipated, and her doctor recommended she not be in a daycare setting. I was an administrative assistant at a regional HIV/AIDS service organization that served most of Western Washington. We provided advocacy to clients, helping them obtain and maintain housing, and provided education to other providers. After leaving my job, I was the natural choice to provide transportation for my mother when she had to stop driving due to poor vision. Shortly after that time, she was diagnosed with lung cancer and needed more frequent transportation and help. Then her dementia progressed, and she also became diabetic, then required 24 hour oxygen due to COPD and her cancer.

When my mother was in her own home, there was usually at least one daily ‘check-in’ call. She would frequently call me with an “emergency,” which could be as simple as not remembering how to turn on her television or as complicated as her oxygen tank failing that required immediate attention. I was always aware that I may need to drop everything and get over there. When my mom needed more care than we could provide we finally convinced her to get some help from an agency at the rate of about $20 per hour, for approximately 12 hours per week. My mother’s care was provided at home, until the last several weeks when she was hospitalized and subsequently discharged to an adult family home for hospice care. Even though family members initially wanted to bring Mom home for her last weeks, we couldn’t arrange enough hourly care – even through the coordination of multiple agencies – as she needed 24 hour care at this point in time for the discharge. Her last few weeks were spent in an adult family home that we were extremely lucky to find. Fortunately, while her day-to-day care was not covered by Medicare, her hospice care was.

Due to the nature of caring for a child with autism and a mother with multiple medical issues including blindness, diabetes, COPD with lung cancer in remission, and dementia – on top of regular day-to-day family needs – there was really no such thing as a “typical day.” Even without being a caregiver, interacting with a parent who suffers from dementia is emotionally wrenching.

While my mom was alive, I had to schedule carefully around her medical and transportation needs. I missed some of my kids’ school activities due to my mother’s care needs. When we had opportunities to spend time together as a family, I often opted to stay home by myself while my husband and kids went off, just so I could have some peace and quiet in my own home. Alone time often included using the time uninterrupted to catch up on bills and paperwork but I missed out on family time, and that was a hard position to be in.

Obviously, vacations are few and far between. We’ve had only four in the last 17 years. I’m tired, both emotionally and physically. If you consider caregiving in relation to a job outside the home, it’s one that I don’t go home from, or take a vacation from. While my mother was alive I was on-call 24/7, just as I am in the case of our daughter.

Now that our daughter is able to be more independent and I have some time to work outside the home, I can’t seem to find a job that works, I’m not contributing in the way I want, or being mentally fulfilled. I’ve had to quit jobs, or take temporary positions. My resume has suffered, and now, most potential employers don’t respond.

I wish there were resources to help caregivers to balance work and caregiving and return to the workforce in spite of the gaps in work history. Because chances are, we’ve developed some valuable skills!”

–Ferol Max, Rochester