Caregiving 101: Things I wish we’d known…

As some of you know…In 1996, my mother required emergency surgery for a brain aneurysm. She was sixty-nine. Three days later, my seventy-seven year old father had a massive stroke. As a family, our lives changed overnight and we began a fifteen-year journey on a path with very few road signs and an inside-out map.

As the only daughter in a family full of boys, I had the role of primary caregiver for much of this time. We all pitched in (including spouses), but in those first several years, there were so many things I wish we’d known!!

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 one 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.

Having been through it, there is some critical information that, as a family, is easily put together prior to a situation where it becomes needed. It might be a rather uncomfortable half hour or so with your parents, but at a minimum you should have:

  • A list of doctors
    • Phone number, address, 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 paid the bills for said appointments!
  • Social Security number
  • Medical insurance information and copies of the cards
  • Bill paying information
  • 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
  • Favorite recipes
    • I might kill 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!

Anything else readers can think of???

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, we would be in the same situation, since Dad didn’t have to know anything about doctors or surgeries (unless they were his) or the like. To him, that was what wives were for.

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

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About hereisakiss

Daughter Writer Art's Educator
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11 Responses to Caregiving 101: Things I wish we’d known…

  1. Liz Maloney says:

    I just made a copy of this blog. This week when I see my Mother I will leave it where she can read it and if the mood strikes her she will (hopefully)get together the information that would come in very handy for me the only daughter. My Mom likes lists, and if I let her think it’s her idea this might go over OK. I hope…..She hangs on so tightly to her independence. Thank you for sharing.

  2. Liz…so good to get this note. It is not an easy conversation, but without this information, you can be at such a loss when and if it is necessary. We were completely unprepared! With your mom, I’m hoping the mood strikes!!

  3. misenplacememoir says:

    Very timely for me. My parents are long gone but I have dear friends from England who moved here many years ago who are as old as my parents would be. Their immediate family all live in England. The man had a stroke a year ago, then his wife, who’d been caring for him, had an aneurysm this past New Years and was hospitalized for four weeks. Being their closest friend, I was suddenly “on guard” and trying to get things done. Talk about rallying the circle of friends. So this sort of planning also holds true for people emigrating to the US. No one wants to think of these things. My friends fell through some serious gap without any sort of a plan: too old to get health insurance and they do not qualify for Medicare….

    • hereisakiss says:

      Wow, Marisa…such a tragic situation for them to be in. Yet lucky to have someone like you to look out for them to the extent that you could. I hope they are both on the mend. Just a bit of ‘uncomfortable’ pre-planning would have helped a tough situation be a little less difficult. You are a good friend!

      • misenplacememoir says:

        They appear to be on the mend and England is here, (finally) though they will never be the same as before. Certainly makes you think about your mortality and planning for age as the aches and pains set in…

      • hereisakiss says:

        Yes, it certainly does…particularly while we are still able to think it through clearly. I don’t want my own children having to figure it all out!

  4. dale says:

    Hey E – just so ya know… very first file in my cabinet is labeled “important papers”

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