• Yesterday I visited my mom at her nursing home in Rockville, MD. I picked her up and took her out to dinner, something that wasn’t always possible.

    For years she was confined to a wheelchair and constantly in the throes of an epic bi-polar mood swing. Public outings with her were heroic and often dangerous feats.

    But in the last few years she’s calmed down. Her manic swings have disappeared. In the last few years she has spent much of her time ruminating about death. I’ve talked openly with her about it.

    3 1/2 years ago her nephrologist gave us a prognosis of 5 years at best, if she really wanted to fight. For much of those years it seemed she didn’t. But she feared death. She would tell me she just wanted to have a heart attack in her sleep and not wake up.

    But recently something has shifted. When I picked her up yesterday she was in the common room – not lying flat on her back in bed as I usually find her. She introduced me cheerfully to a friend and new nurse.

    At dinner I asked her to make a list of the things she wants to do in the next year. “Go to all the activities,” she said. “And eat out once a month. But I can’t afford it.” Then she asked me her most compulsive question.

    “How much money do I have?”

    The answer to this question should be clear, since she’s on Medicaid, which limits personal assets to $2500 for qualification. But three years ago my sister and I went through the arduous and expensive process of setting up a ‘Supplementary Needs Trust‘ (often referred to as a Special Needs Trust).

    At the time she had about $50k in savings. About half of that went to pay the lawyer to set up the trust and navigate her Medicaid application process. She was left with a little over $20k in the trust, to be used for care management and other limited personal expenses not covered by Medicaid or Medicare benefits.

    Today the trust balance is exactly $8,508.06. Basically at the rate she’s spending this last reserve, it will last exactly as long as the Nephrologist’s prognosis.

    As I said goodbye to my mom she asked how she was going to get to my nephew’s bar mitzvah. He is now 4 1/2. I’d love to see her rally and prove the nephrologist wrong. But that would mean my sister and I will have to start coming up with the funds to cover her supplementary needs.

    Death. Money. Family responsibility. These are the things we want you to start thinking about.

    I just came across a new resource called Everplan that guides you through this process from any point along the path. Check it out and tell us what you think!

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    This entry was posted on Sunday, September 8th, 2013 at 4:55 pm and is filed under Communication & Planning. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
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