Forty caregivers of stroke survivors reported they often felt abandoned and wished they had someone they could call with questions (1). This may sound surprising unless you understand that staff at different agencies do not communicate with each other. This means each round of therapists has to do initial evaluations of the client. This does not leave much time for talking to the caregiver. This lack of communication is a problem. Lutz found that "during rehabilitation many
of these caregivers still hoped and expected that the stroke survivor would return to pre-stroke function (p. 8)." When caregivers realize what they have to do, the primary focus on the client is already entrenched.
Reading this article on caregiver readiness reminded me that I was clueless when I was an OT.
It took having a stroke to teach me that caregivers are pummeled by a quadruple whammy. They have to: 1) do the chores they have always done, 2) take on their partner's role, 3) be a therapist, and 4) be a case manager. A wife may take out the garbage, take the car to have the oil changed, and change the batteries in the smoke detectors. A husband may go grocery shopping, cook and do laundry. When they are therapists, caregivers may help with self-care like bathing, set up and supervise home exercises, and deal with a stroke survivor's bad moods. As a case manager, caregivers may have to schedule multiple doctor appointments, deal with insurance companies, and make multiple trips to the drug store to pick-up multiple drugs. Many caregivers do this without professional psychological support or respite care. Now I see caregivers as angels.
(1). Lutz B et al. Improving stroke caregiver readiness for transition from inpatient rehabilitation
to home. The Gerontologist. 2016; Vol 00:No.00,1-10. doi10.1093/geront/gnw135.