Forty caregivers of stroke survivors reported they often felt abandoned (1). This may sound surprising unless you know therapists usually do not talk to caregivers. 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)." Caregivers reported not knowing how to help when their loved one went home. One caregiver said when her husband struggled with a task she helped by doing it for him. This solution produces muscle weakness and mental decline which increases the caregiver's burden.
As an OT I was oblious to the stress that caregivers experience. They have to: 1) take on their partner's chores, 2) be a therapist, and 3) be a case manager. A wife may take out the garbage and change the batteries in smoke detectors. A husband may clean toilets, do laundry, and cook. When caregivers are therapists, they may help with self-care like bathing, set up home exercises, and deal with a stroke survivor's bad moods. When caregivers are case managers, they schedule doctor and therapy appointments, arrange transportation, deal with insurance companies, and make multiple trips to the drug store to pick-up medication. Many caregivers do this without professional psychological support or respite care. Now I see that caregivers are angels. homeafterstroke.blogspot.com
(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.
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