The last newsletter listed 10 things about Aphasia that you may not know you have in common with others with aphasia. Today's document breaks down those items and discusses them individually.
Topic: The person with aphasia interacts better during therapy activities with a person other than the spouse or caregiver
This is a common dynamic and there are several reasons that it develops. The client had a stroke and while in the hospital, the spouse or caregiver became the "alternate therapist", getting trained to continue the therapy activities at home. This makes sense as a medical model, because once therapy has ended, the client should continue with therapeutic activities. The problem with this is that not all couples are satisfied with or fully willing to participate in this arrangement.
The role that the spouse or caregiver had in the family before the stroke is important. The caretaker may have been the one to take care of the children and the house, while the client took care of the financial and social aspects and worked outside of the home. Changing the dynamic late in the game becomes difficult, and frequently the caregiver is overwhelmed with new responsibilities after the stroke, including being the "alternative therapist". As a caretaker, you can do your best to help your spouse improve their aphasia or physical status, but you can't make them want to do it. You cannot take sole responsibility for it, no matter how much you want your spouse to "return to normal". There have been some clients that I have seen who don't want their caregivers to act as their therapists. As the caregiver, you shouldn't feel obligated to perform as the therapist if you don't want to or your spouse doesn't want it. Keep your role as the spouse, parent, grandparent, runner of the household, working professional, etc. and let others help you with the care of the person with aphasia.
While your loved one with aphasia still loves you, they may be dealing with anger and frustration about the aphasia. He/she may no longer be able to fulfill their family role or function, which brings a sense of loss, anxiety and uncertainty. When working with a therapist, the person with aphasia is interacting with a third party who only knows them as the patient. The person with aphasia may perceive the therapist as more knowledgeable than their caregiver, more patient, and more helpful. This should generally be the case because you are not the speech pathologist. It's our job to know more about aphasia diagnosis and treatment than the caregiver.
Daily interaction with anyone can be demanding–imagine now that you have communication impairment so that you can't express your feelings or have a discussion. It's safer to be angry with someone you're close to and unfortunately you may get some aggression or anxiety directed at you. Talk with your speech pathologist if you're not interested in being the "alternative therapist" or if you have too much difficulty with that role at this time. Only you know how many roles you can fulfill and fulfill well at any time. There is not necessarily anything wrong with you as the caregiver for knowing your limitations or with your loved one for feeling more comfortable participating in therapy with the actual speech pathologist.
Dr. Bartels-Tobin
