Caregiving 101

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Elizabeth Thomas, Connecticut

In 1996, my mother required emergency surgery for a brain aneurysm. She was 69. Three days later, my 77-year-old father had a massive stroke. As a family, we began a 15 year journey on a path with few road signs and an upside-down map.

The only daughter in a family full of boys, I wound up with the role of primary caregiver for much of this time. We all pitched in (including spouses), but in those first several years, most of the decision-making fell to me. There was so much to learn. Then, as policies and programs changed, along with personalities and prognosis’, there was so much to relearn.

Our family had no experience with this type of situation, nor were we expecting it. To make matters more difficult, it quickly became apparent that there was no single place to get the information needed — not within the medical profession, the health insurance industry, or even within our own network of relatives and friends.

There is some critical information that, as a family, is easily put together prior to a situation where it becomes necessary. It might be a rather uncomfortable half hour or so with your parents or loved ones (I can hear my father - What? You think I’m going to die?), but at a minimum you should have:

  • A list of doctors, contact information, date of last visit
  • Prescribed medications, preferred pharmacy
  • Known allergies
  • Past surgeries
  • HIPPA access to health information
    Without HIPPA access, someone once refused to tell me whether my mother’s doctor appointment was at 10am or 10:15am…even though I made the appointment, always brought her to her appointments and had Durable Power of Attorney, meaning I could act on her behalf in any legal matter, including financial.
  • Social Security number (preferably memorized)
  • Medical insurance information and copies of both sides of the cards
  • Living will
  • Includes advance directives that clarify what medical actions someone wants or doesn’t want taken to be kept alive, along with their wishes in regard to management of pain and donation of organs
  • Legal will
  • States what a person wants done with his or her belongings and assets after death
  • Final wishes
    Unbeknownst to us, our mother wanted to be cremated. All we knew was that she would come back and haunt us if we held a wake for her (she did not want anyone she didn’t like when living, able to see her dead) — hereisakiss.wordpress.com/2011/10/03/cremation-or-not
  • Favorite recipes
    What I wouldn't give for my mother’s ricotta cheese cake recipe and so wish she was here to show me (one more time) how to make homemade ravioli! And a hug!

I’m probably forgetting something, but this is a good start. Granted, with our family it was both parents at the same time. If it were just Dad, Mom would have some (but probably not all, since he handled the bill paying and legal stuff) of this information. If it were just Mom who became ill, we would be in the same situation, since Dad didn’t have to know anything about doctors or surgeries (unless they were his). To him, that was what wives were for.

All this being said, maybe you should put this information together for your own children so someday, they too, will be prepared.


Elizabeth Thomas blogs at hereisakiss.wordpress.com.