In a family with aphasia, it can be very stressful as a caregiver to juggle everything. You may still be working, taking care of children, and orchestrating a lot of other daily life activities. It can be easy to become resentful of the person with aphasia in your life sometimes. While you know it’s no one’s fault, you may come to blame your loved one for “not doing more”. With all of the tasks and responsibilities we have as caregivers, it can be frustrating to see someone doing “nothing” when we’ve been working hard all day.
“Why isn’t he working more to improve his aphasia?” stressed-out caregivers will ask me. “If I had aphasia, I’d be working on it all the time.” It’s easy to imagine what you would do in different situations, but you don’t have brain damage. You imagine that you’d use every minute to get better because you’re highly motivated to get your old life back. What I tell many caregivers is that it’s not that easy. There aren’t a lot of therapy activities someone with aphasia can do alone, and the ones that can be done may be more busy-work than therapeutic. Regardless, you want that person to just do something.
The reality is that the person with aphasia may want to work but not know where to start or what to do. We often recommend set schedules for clients after they leave our program. Schedules help with planning the therapeutic activities and provide structure. We also provide step-by-step instructions to continue working, so that the caregiver can help set the day’s therapy task.
Working on aphasia is hard. Imagine that you practiced something for several hours every week and saw no noticeable difference after all that time—would you be motivated to continue? We don’t always do the hard things that we know we should do, even if we don’t have aphasia.
Finally, remember that what is most important to you may not be what’s most important to someone else. You can’t make someone else want to do something. It will not reflect poorly on you if your loved one doesn’t practice all the time—it’s not your job to be a therapist all the time, too. Aphasia takes hard work over time, but there’s no deadline.
As a caregiver, you want your loved one to be happy and communicate better, so you may feel a pressure to use every spare moment as therapy practice. However, it’s ok to rest. It’s ok to do something fun instead of working all the time. It’s ok to give yourself and your loved one a break. It’s ok to balance life and therapy. Take the pressure off of yourself and your loved one and find your balance.