Friday, May 26, 2017

What She Thought


My mother died four months ago. In the ensuing months, after the funeral, we went through her things, bequeathing them to family, friends and her favorite homeless shelter. It’s not easy, going through someone’s things. Almost every sweater, every blouse held a memory. How could I give them away? I wanted to hear from her. I tried to listen: “You should give that gauzy teal scarf to Gerry. She’ll wear it.” I channeled her wishes the best I could and probably got some wrong. But you can’t live your whole life with someone without knowing a little about what she might think.

Then we had to help my dad. I don’t know how we did in helping him deal with his loss, because the more immediate decision was where he would live. He couldn’t stay alone in Florida, nor were there any real adequate solutions available--in our opinion. We packed up as much of the apartment as would fit into my house and garage and moved him over a thousand miles away from the home he shared with my mom to Connecticut.

Four months. It seems impossible that we were able to accomplish so much in such a relatively short amount of time. Now that all the big decisions have been made; remodeling, moving, donating, we’ve come to the job of living with our loss. Did we care for her the best way we could? It’s hard not to have regrets, but were there any really big ones for her? It’s just so hard to know, especially when a loved one--your parent--is taken so suddenly.

There are boxes and boxes of belongings stacked in my garage, but when I packed up my parents’ things in Florida, I bought a plastic crate for “papers.” There were tons of papers having to do with life and death: doctor’s bills, prescription statements, rehab agreements, hospice booklets. I dragged that box upstairs to my office, leaving the others for “later,” in an effort to tackle any real, burning issues first. My eyes glazed over from trying to interpret one form after another, until, in between another hospital bill and insurance statement, I saw my mother’s distinct handwriting on a folded sheet of paper. I pushed the pile aside and unfolded the paper. A full page of handwriting in pencil on the back of one of the New York Times crossword puzzles she liked to print out and solve in between reading her books. It was dated 6/22/16 and it appeared to be entitled “My Outrage. ” After those titular words, it launched into a rant about my dad’s most recent medical issue--a fall which put him in the hospital. It goes like this:

My Outrage
is with the Hospital and its [June] 7th emergency room assessment of my husband--
Here is all:
            85 year old man -
            Diabetic
            Legally blind w/
            A pacemaker
Brought into Emergency with--
            A broken shoulder bone
            and
            A shattered? burst?
            broken patella (knee cap)
            (both on the left side!)
They
Knowing
            He will need 4-6 weeks of Rehab. And they send him to Rehab care knowing all this and with no consideration of his insurance [coverage]--

I feel like an anonymous number in an anonymous system and I feel helpless

BUT

I can’t afford to expend my energy in a negative way. I need me to be upbeat, positive and creative and mostly loving, caring and kind. It’s getting hard, but that has to be my focus.

It is what it is, but it will be what you make it!

Hopefully, others will take up the cause!

I remember this time in their lives, when my dad fell and was taken to the hospital. He stayed more than three days and he was recommended to skilled care, fortunately available in their retirement community apartment building. What wasn’t fortunate was that, because he was never officially admitted to the hospital, his rehab wasn’t covered by Medicare and they had to pay out of pocket for the six weeks of rehab. Their savings account wasn’t meant for this, but they were lucky to be able to cover it. This isn’t the only time it happened. He fell again, in November, in the midst of my mom’s escalating physical decline and cancer diagnosis. They--the hospital, the doctors, the case managers--did it again: kept him for more than three days, discharged him to skilled care and left it all on my parents’ shoulders because he wasn’t officially admitted. He was there under “observation.” And observation isn’t covered. It’s a break down in the system of care that many people aren’t aware of. But the hospitals are. So are the rehab centers.

I don’t have to guess about what she thinks this time--I read it with my own eyes. I want to share her thoughts here, not for some redress or malice, but because her voice deserves to be heard. My mom's outrage doesn't have to remain hidden in a file folder among unsympathetic statements. If sharing it does nothing but help one person be aware of this glaring neglect of care in the system, then great. But even more importantly, I want to share that part of her that experienced this maltreatment and pushed it aside so she could focus on the task at hand. Anybody can point out unfairness, but it takes real strength to move forward despite it. That’s her cause. One I take up gladly by sharing this now. 
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7 comments:

  1. This is a heartbreaking. Why we can't do better as a nation in providing lasting affordable care is a mystery. The illness and death of loved ones is burden enough.

    ReplyDelete
    Replies
    1. Thank you, Jean. I appreciate your comments.

      Delete
  2. The American Health care system is the biggest racket on the planet! No other country would ever d this to there elderly. Peter and I wrote about it in our book The Pathway Home!

    ReplyDelete
    Replies
    1. Thanks, Liz. It's a morass of requirements that have nothing to do with care, that's for sure.

      Delete
  3. Ugh.... what an outrage indeed- and what a poignant expression from your mother. So important that you shared this....

    ReplyDelete
  4. Thank you, Barbara. It felt good to share her voice.

    ReplyDelete
  5. Why we can't do better as a nation in providing lasting affordable care!!
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