I am caring for aging parents, a population you address well here. But I am also caring for a young adult with an abrupt onset of serious mental illness. I find the understanding, the resources and support for this greatly lacking in comparison to aging adults. Parents in this role are gathering and advocating , but that is on top of an incredibly stressful situation. We need help as it cannot only be on our shoulders. I hope the medical community can listen deeply to us and then help us be heard!
So glad you are sharing this. I remember driving from Austin, TX, to Pensacola, FL, multiple times during each year of my parents’ final decade of existence. My father lived until he was 94, and my mother lived until she was 97. They insisted on being cared for in their home during their final years, a decision with which we all agreed. I was lucky in that they had adequate pensions and retirement funds to cover the cost of caregivers, cooks, and chauffeurs for about a decade. These services were part-time initially, and later 24/7 care was needed. I managed all of these caregivers and their expenses and pay, and talked with every physician during or after their frequent medical visits. I visited my mother in the hospital for her fractured hip and later arranged for her transfer to a rehab facility before she returned to home. I visited with my father in the hospital after his heart attack and stent to talk with his cardiologist. I worked with the Hospice caregivers for my mother during her final year at home. I worked with my father’s surgeon after he operated for a bowel obstruction only to discover an abdomen full of metastatic cancer. I brought my father home after that surgery so that he could pass away there.
I was a typical eldest daughter in my voluntarily orchestrating all of their care. I can admit now that this experience was more stressful than joyful, perhaps one of the most exhausting challenges I have met in my career (as an ICU physician). And this description is coming from someone who knows how to “work” our healthcare system. For any number of reasons, most people would be unable to manage this intense call to be a family caregiver, whether providing direct or indirect care to their family member.
I am caring for aging parents, a population you address well here. But I am also caring for a young adult with an abrupt onset of serious mental illness. I find the understanding, the resources and support for this greatly lacking in comparison to aging adults. Parents in this role are gathering and advocating , but that is on top of an incredibly stressful situation. We need help as it cannot only be on our shoulders. I hope the medical community can listen deeply to us and then help us be heard!
So glad you are sharing this. I remember driving from Austin, TX, to Pensacola, FL, multiple times during each year of my parents’ final decade of existence. My father lived until he was 94, and my mother lived until she was 97. They insisted on being cared for in their home during their final years, a decision with which we all agreed. I was lucky in that they had adequate pensions and retirement funds to cover the cost of caregivers, cooks, and chauffeurs for about a decade. These services were part-time initially, and later 24/7 care was needed. I managed all of these caregivers and their expenses and pay, and talked with every physician during or after their frequent medical visits. I visited my mother in the hospital for her fractured hip and later arranged for her transfer to a rehab facility before she returned to home. I visited with my father in the hospital after his heart attack and stent to talk with his cardiologist. I worked with the Hospice caregivers for my mother during her final year at home. I worked with my father’s surgeon after he operated for a bowel obstruction only to discover an abdomen full of metastatic cancer. I brought my father home after that surgery so that he could pass away there.
I was a typical eldest daughter in my voluntarily orchestrating all of their care. I can admit now that this experience was more stressful than joyful, perhaps one of the most exhausting challenges I have met in my career (as an ICU physician). And this description is coming from someone who knows how to “work” our healthcare system. For any number of reasons, most people would be unable to manage this intense call to be a family caregiver, whether providing direct or indirect care to their family member.