Many families with aphasia may appeal to me for advice. It may revolve around driving, being home alone, or walking to the mailbox. The issue is usually that the client with aphasia wants to do something, but the caregiver is against it.
From the caregiver’s side, you have dropped everything and focused so much on your loved one’s stroke recovery. It’s been devastating in so many ways. You’re used to being there, taking care of their every need. You may be terrified of what might happen if you aren’t around. You may also be confused about what you should do and when you should do it. It’s not an easy transition to this new life. Fear, uncertainty and fatigue may be your main emotions.
Sometimes you get so used to it that you resist a change in your routine. It can be hard to know when it’s time to start pushing your loved one towards independence. You start thinking of all the things that could go wrong should you step away for even a moment.
From the client with aphasia’s side, they may feel that they’re ready to be their own person again. Clients at our intensive program may have come to us specifically because they want to be more independent. The client with aphasia may be ready to explore their lives again, or he/she may need more confidence to feel more secure about the attempt.
I can see both sides. For example, one younger client was fiercely determined to drive again. He expressed his annoyance often, saying his wife “hovered” too much. He saw her as interfering too much during his life transitions (medical appointments, going to the store, getting his driving permit, etc). He could not understand her perspective at all. His wife found it hard to let him possibly flounder and fail. She constantly compared him to his “before” stroke self. She thought of him as more disabled and helpless now instead of understanding that he was “ok” in some areas.
If he tries it himself and fails, will he give up forever? Who wants to watch that happen? As a caregiver, she was there from that very scary moment of the stroke. She was there for the hospitalization and surgery, and made all of the medical decisions. She’s seen him come so far, but their routine has changed since the stroke. These “duties” are now ingrained and hard to break.
There are a million “what ifs” to control—what if he gets lost, what if he has another stroke, what if the police approach him, what if he gets robbed, what if……on and on and on.
I think as caregivers, we feel that we have to control every situation. We want nothing bad to happen. We may feel responsible for the outcome of every decision. We imagine a million different scary and bad scenarios. It’s harder to imagine success, but it’s also a likely outcome.
Society and perhaps other family members expect perfection. Any mistake means that you don’t care enough, you aren’t trying hard enough, etc. It’s a lot of pressure to always do the right thing, whatever that is. My client’s wife was actually doing a great job of trying to give him space, but he’s fiercely independent. Caregivers walk a fine line between encouragement and reality. You have to provide unlimited hope, but you also may have to tell someone you love that they can’t do something right now, maybe not ever again.
All you may be able to control is yourself, trying to see both sides of the issues.