The caregivers are really not sure what to expect or how to trend, with an understand that the survivors world has changed and not left with NOW WHAT?.
I had my sister supporting me through this period. I remember being watched constantly, waiting for me to require something or frequently asked if I need anything and that irritated me. Found it comforting being alone then around others, which in turn was a frustration for her as she didn’t know how to help me anymore.
Caregivers really have it hard, appreciation goes a long way to recharge their caring heart.
But isn’t that a reflection of how little support / training caregivers receive today? In my understanding, the expectation for many caregivers is set at assisting the survivor to go to the bathroom, or cook some food. The caregivers had little idea what a survivor is going through. Honestly, many caregivers might have thought, helping a stroke survivor would be no different than helping an elderly who just fractured her bone. They had no idea the psychological trauma a survivor would have to deal with.
Panic and frustration certain do not help accelerate the learning curve.
Caregiver burnout comes about for a variety of reasons, but the most outstanding one in my situation was poor communication between the survivor and the caregiver. A caregiver has to be patient with a survivor, especially when the survivor has aphasia or can’t speak at all, as in my case for 5 weeks when I had to use the gruesome communication board. Even with the board, the caregiver got into a frenzy about what I needed even though I pointed to what I needed, even with pictures of a glass of water or a toilet! Once I started speaking, at first with only limited vocabulary, I found it difficult, in pure aphasic fashion, to think of the right work. And often the caregiver finished the sentence for me, also contributing to burnout because I wanted to finish the sentence myself. Hence, frustration came to the forefront every time because I let her know in an angry fashion. Looking back, it was mostly my fault for the burnout even though I couldn’t stop it from happening.
