As the caregiver in a family with aphasia, you're probably pretty familiar with being the chauffeur, nurse, spouse, housekeeper, speech therapist, cheerleader, occupational therapist, appointment maker, cook and everything else that aphasia entails. It seems the work is never done. It's so easy to get burned out when everything depends on you, but you keep yourself running in circles somehow. But you aren't invincible, so you must find balance in your life.
- Take time for yourself. It's easy to say and harder to do. You can't be there for others if you're exhausted and have nothing left to give. You'll make yourself sick or worse. Do things that nurture yourself, whatever that is. For example, you can:
- Go to an exercise class
- Walk somewhere peaceful
- Take a nap
- Talk to a counselor or other caregiver
- Go to lunch with a friend
You can't spend time worrying about what someone else is going to think because you took a few hours to yourself. Just because you didn't have a stroke or aphasia doesn't mean that you aren't important, too.
- Connect with others in your situation. Many people find stroke or aphasia support groups to be less than ideal–there often aren't people like your family. Many families who come for intensive therapy here have never met anyone else with aphasia!! However, groups such as the Aphasia Recovery Connection have events and online support that's accessible and specific to aphasia. You'll find that there are actually quite a few people just like you who know what you're going through.
- Don't make everything about aphasia. Setting goals and being motivated to improve are great ideals. When families leave our facility, we emphasize that there need to be specific "speech" enforcement times. The rest of the day, then, should be about communication in general and doing normal daily tasks and activities. You and your loved one will burn out quickly and become resentful of each other if you make every moment a 'teaching moment'. Sometimes you're tired and you just want to make it fast to get to the next thing.
- Only worry about what you can control, let go what you can't. You can't make the aphasia better through force of your own will. You can't make your loved one want to do more. The only person you can control is you, so start there. While you want to encourage and help your loved one with aphasia to get better, there's only so much that you can do. It's painful to see someone you love so unhappy or to watch them deal with the loss of your old lives together, but you can't do it all alone.
- Educate yourself and plan your next steps, but you don't need a 3-year plan by next week. Many caregivers are in a panic when they get to the Center–why didn't I know about this sooner, is it too late, what should we do next, will this ever get better? Think in 3-6 month stages–you have a plan and you need to see what happens at the end of that stage before you decide what's next. Just today, a client said he wanted to be back to work in five months. I said, "let's focus on the next four weeks right now and go from there". Aphasia doesn't often follow your pre-set timeline, so don't set yourself up for disappointment. Be here in the moment.
- Most importantly, get help. It's ok to ask for help and delegate tasks to others. So many people tell me that they have no one to help them with anything. Sometimes this is just a mindset change. We train people all the time to deliver the bulk of a client's therapy themselves or with a neighbor, student, etc. If money is an issue, there are retired teachers, neighbors, people at your church, students and others you can recruit. Can you swing $30 a week for someone to clean your house for 2 hours? Think of what CAN be done without you, instead of what CAN'T be done.