I just had a phone conversation with my daughter: her husband arrived home yesterday after 3 months in rehab following his hemorrhagic stroke. And now she finds herself living in a house that is not her home anymore. Steve is unable to achieve anything on his own and the aide appears to lack the skills necessary to care for someone so debilitated. This will work itself out. One way or another. And as her mother and a caregiver to my husband, I still lack the right words to hand her that might ease her plight. Where in the media is information like this? We have our own Caregiver Space Communities but more often than not the advice we receive come from others in our position. They, too, have floundered and are finding their way. It seems to me that we need our own "Sanjay Gupta of caregivers" to help those of us in emotional turmoil. If more information was shared through the media the world might begin to understand the caregiver's plight. It is more than financial; it is emotional, spiritual and physical.
It's amazing how no matter how much we try to prepare for disability and no matter how much support we have, it's still such a struggle. Each situation is unique and there's just no preparing for it as individuals. I'm not sure awareness is what we need, unless that awareness leads to changing social structures to provide financial, physical, and medical support so we can focus on our emotional and spiritual needs.
Awareness leading to changing social structures, yes. But awareness from others of our hard work - emotional and physical. All too often those who have not been in our situation just don't "get it" and wonder why we proclaim our lives are so difficult.
I just had a phone conversation with my daughter: her husband arrived home yesterday after 3 months in rehab following his hemorrhagic stroke. And now she finds herself living in a house that is not her home anymore. Steve is unable to achieve anything on his own and the aide appears to lack the skills necessary to care for someone so debilitated. This will work itself out. One way or another. And as her mother and a caregiver to my husband, I still lack the right words to hand her that might ease her plight. Where in the media is information like this? We have our own Caregiver Space Communities but more often than not the advice we receive come from others in our position. They, too, have floundered and are finding their way. It seems to me that we need our own "Sanjay Gupta of caregivers" to help those of us in emotional turmoil. If more information was shared through the media the world might begin to understand the caregiver's plight. It is more than financial; it is emotional, spiritual and physical.
It's amazing how no matter how much we try to prepare for disability and no matter how much support we have, it's still such a struggle. Each situation is unique and there's just no preparing for it as individuals. I'm not sure awareness is what we need, unless that awareness leads to changing social structures to provide financial, physical, and medical support so we can focus on our emotional and spiritual needs.
Awareness leading to changing social structures, yes. But awareness from others of our hard work - emotional and physical. All too often those who have not been in our situation just don't "get it" and wonder why we proclaim our lives are so difficult.