National Caregiver's Day
Posted by on Tuesday, April 7, 2015
Today marks National Caregiver's Day, when we recognize the hard work of the over six million people who are forced to balance their fulltime employment or education with the constant demands of looking after someone who is disabled in some way. I know from painful personal experience how difficult and damaging it can be, and I hope that this day will raise awareness of this under-appreciated role that many people are forced into.
In my own case, my father had a stroke during the final year of my undergraduate studies, and the hospital required a lot of my time with meetings and discussions about his future care. Ultimately they pressured me into taking him home and being his fulltime caregiver for "just a few weeks", "two months at the maximum" while waiting for a space in a carehome. When two months expired they told me about delays, but guaranteed "no later than August". August came and I had to move to Edmonton for my graduate program, and still no carehome. But they assured me that by the following April my father would definitely be in a carehome. Then it was delayed to the following September. After that they just quit trying to find a carehome space for him.
It wasn't just a lack of finances either, since my father had insurance that would cover a carehome space. Even if he hadn't, it would have been far more profitable for me to pay for a carehome bed and keep my dream job going. They simply didn't have a space for him no matter what the price we were willing to pay.
In the end, the "few weeks" turned into more than eight years of fulltime caregiving. That is eight years with no vacations, no evenings or weekends off, no holidays off - just 24/7 of fulltime caregiving. (After he threatened staff with his collection of hand guns early on, respite care was no longer an option). And in those eight years other problems arose in the family that required even more caregiving, extending it for another five years, and again with no help from anywhere or anyone. By the time it was over, I had lost my dream career, all of my friends had moved on with their lives, much of my savings had been used up, and essentially everything that I enjoyed in life was gone. And the final cut was several years of sorting out my father's estate, only to discover that he had given away at least $500,000 worth of joint savings, left unpaid debts and cancelled his insurance policies, so there wasn't even an inheritance to offset those years of lost wages.
It is true that my own situation is perhaps on the extreme end, and that there may have been other things going on as well with my father's mental health that worsened the problems, but it is still an example of the high price of caregiving. And there are millions of people just like me who are really suffering with the burden of responsibility that should never have been placed upon their backs.
It is long past time that we as a nation and a society start to support caregivers, and ideally put an end to hospitals balancing their budgets by relying on family members providing free labor. This blight on society must end.
In my own case, my father had a stroke during the final year of my undergraduate studies, and the hospital required a lot of my time with meetings and discussions about his future care. Ultimately they pressured me into taking him home and being his fulltime caregiver for "just a few weeks", "two months at the maximum" while waiting for a space in a carehome. When two months expired they told me about delays, but guaranteed "no later than August". August came and I had to move to Edmonton for my graduate program, and still no carehome. But they assured me that by the following April my father would definitely be in a carehome. Then it was delayed to the following September. After that they just quit trying to find a carehome space for him.
It wasn't just a lack of finances either, since my father had insurance that would cover a carehome space. Even if he hadn't, it would have been far more profitable for me to pay for a carehome bed and keep my dream job going. They simply didn't have a space for him no matter what the price we were willing to pay.
In the end, the "few weeks" turned into more than eight years of fulltime caregiving. That is eight years with no vacations, no evenings or weekends off, no holidays off - just 24/7 of fulltime caregiving. (After he threatened staff with his collection of hand guns early on, respite care was no longer an option). And in those eight years other problems arose in the family that required even more caregiving, extending it for another five years, and again with no help from anywhere or anyone. By the time it was over, I had lost my dream career, all of my friends had moved on with their lives, much of my savings had been used up, and essentially everything that I enjoyed in life was gone. And the final cut was several years of sorting out my father's estate, only to discover that he had given away at least $500,000 worth of joint savings, left unpaid debts and cancelled his insurance policies, so there wasn't even an inheritance to offset those years of lost wages.
It is true that my own situation is perhaps on the extreme end, and that there may have been other things going on as well with my father's mental health that worsened the problems, but it is still an example of the high price of caregiving. And there are millions of people just like me who are really suffering with the burden of responsibility that should never have been placed upon their backs.
It is long past time that we as a nation and a society start to support caregivers, and ideally put an end to hospitals balancing their budgets by relying on family members providing free labor. This blight on society must end.
I am a theoretical physicist and mathematician, as well as an unpaid caregiver. In the past I have also been a computer programmer, roboticist, author, web designer, and countless other titles too numerous to list.