“Do you work together well?”
This is an important question I ask during orientation. If a caregiver and client work well together, the caregiver can have a larger role in homework and easier daily communication. If they don’t work well together, we do more separate trainings and design homework to be done without much caregiver oversight.
Sometimes caregivers see themselves as failures because they can’t work with their loved one with aphasia. They see other clients welcoming help from their spouses and feel that there must be something wrong with them. They may be willing, but the client with aphasia isn’t.
This is actually pretty common. Like your mom used to say, “Don’t worry about what someone else is doing. Worry about yourself”. Everyone’s situation is different. Be glad that you get to be the spouse and not the therapist, too. Changing roles to be the ‘therapist’ and the spouse doesn’t work for everyone.
Sometimes the caregiver is just too stressed and tired and doesn’t want the extra burden of more work. The caregiver can feel guilty that they don’t want to be a speech therapist as well as spouse. All therapies tend to end with the caregiver taking the place of the therapist, and sometimes you feel inadequate to be ‘in charge’ of your loved ones recovery.
You don’t need to be in charge of every aspect of aphasia recovery — that’s our jobs as therapists. You have the right to say, “No, I don’t want to do this”. Don’t worry about what they think about you, that’s not your problem. By letting someone push you into this position , you are adding stress to an already stressful situation.
My example is working with my son. He has dyslexia and language processing issues. I’m the best qualified to work with him. But I also have an emotional investment in the outcome, so I’m stressed by every little task we do together. I feel the pressure to make this better. I know that if you can’t do X, then he’ll be sad, he might fail, he may not get a job, and so on. I’ve turned this into a big story — my son’s happiness and success depends on me.
You don’t have to do it all. Your life may have become all about the person with aphasia, so take some time for yourself. It’s a balancing act, but you can only take on so much. I know it’s easy to say and hard to do. Many caregivers at our program begin by “being here for” the client, but now get to have several hours a day to themselves. You get to still learn about aphasia and how to communicate better, but you get to take a smaller role.
And either way, working well together or not, it’s ok.