Tag: end-of-life

  • Hello again

    My husband, Rob, right, and his brother, Ron. They were both more than a little at home in the kitchen, and when they collaborated, it was always wonderful.

    I’ve been away.

    Last summer, a mutual friend called and told us she was worried about my husband’s brother. He was losing weight and getting weak.

    We lived 350 miles apart, so we didn’t see each other more than a couple times a year, although we talked on the phone often.

    When we saw him, we were shocked at how wasted away he was, and he had the look of a kid who’s been caught fibbing.

    Ron didn’t want people to treat him as though he were dying — even though it was obvious he was dying. That was the rub. People didn’t want to have a good debate anymore. Everybody was being so nice.

    Ron lived in a condo in a grand old building and his neighbors looked after him. But they were getting weary of shopping, cleaning, assembling furniture … we had to persuade him to hire help. Once he did, he loved the CNAs who cared for him.

    The thing is, we are the same person as we are dying that we have been all our lives. Ron could be kind and gentle, but he really was a crabby old man (even as a young man) who knew things better than the rest of us did. And he was usually right. But he was also demanding and expected you to take any advice he offered without question. He was a gourmet chef and a food writer, in addition to having been a high school English teacher. He was, in turn, humorless and hilarious, curious and insufferable, witty, thoughtful and petty.

    We spent the next four and a half months traveling to Louisville every other week, putting out proverbial fires he had set. He insisted on using his phone to type and proceeded to screw up every password on every account he had online. Then he would mess around with settings so badly that people had to take his phone to the shop to straighten it out (shoutout to the good folks at T-Mobile, who were kind enough not to laugh at us).

    Ron was not one to admit to vulnerability, so accepting help wasn’t easy for him. It was one thing to have friends and neighbors offer to help, but to hire someone would mean a loss of independence. It wasn’t about the money, it was about indepndence.

    Hospice was invaluable here. They helped arrange in-home care, medications, in-home procedures. He was comforted and comfortable. It allowed Ron to keep going, directing a couple of final projects before he died. He turned his late wife’s studio into a guest room and added a new section to the condo’s garden, called Annie’s Nook, and dedicated it to his wife. Once those were completed, he seemed to relax a little, but he continued to talk about hoping he could live long enough to see spring.

    He didn’t, unfortunately. He died in early January. He had exactly the death he wanted — at home, with his things around him and his family nearby.

    As executors of his estate, we’ve still been going to Louisville every other week, but that’s almost done now. We donated almost all of the furniture to refugee missions or people we knew to be in need ,and a couple hundred of his books to a banned books lending library here in the mountains.

    It’s a real process, going through the things of someone after they’re gone. We found things we wished we hadn’t, but we found evidence of his tender side (love letters to his wife) and his love of cheap gadgets (a trait he inherited from his father). I see him in a whole new light now.

    We did take a few of his belongings — things that reminded us of him, like the “bird” lamp (it has carved birds on it), a chair, some books and of course, his kitchen tools.

    Now, whenever I cook with his pots and pans, I can hear him offering advice (“Don’t add liquid too quickly,’ “Stir a little faster …”

    But now that the condo is empty and under contract, his absesnce has become more real. I miss his inisight into things as varied as cannabis brownies, Star Trek and Ernest Hemmingway. I miss his hissy fits.

    But it’s time to get back to living, to fighting for people in need. So, hello again. I’m back.

  • 13 days

    Michael with his hero, my dad. They were quite the team.

    On this day 13 years ago, the intake nurse from hospice came. Michael was, as usual, in good form.

    “Do you use tobacco?” she asked, clicking her pen.

    He held up a half pack of Marlboro Reds. “I’m not gonna quit now.”

    “Do you use drugs or alcohol?”

    “I did, but I’m sober 11 years now.”

    “What was your drug of choice?”

    I could see the wheels turning as his eyes lit up.

    “Whadaya got?”

    The nurse looked up from her clipboard, startled, and Michael laughed.

    “I was whatcha call a garbage head,” he said. “Whatever altered my conscoiusness was good with me.”

    She laughed and seemed a little more at ease. This was someone who knew what was happening to him and decided he could still laugh. He intended to exit laughing. He had charmed his hospice nurse.

    The nurse ordered a hospital bed and tray and a walker, which were delivered that same day. James and Janet arrived in the afternoon with the last of Mike’s belingings, including his gaming computer, which he and James had built. They used to build or refit computers for people who were newly sober and trying to put their lives back together. Some of those people were already getting in touch to visit and say goodbye, and for the next 13 days, our driveway and house would be full. You might think the mood would be sad, but it wasn’t because Mike saw every day as a gift and even though he was pretty much confined to a small bedroom, he was enjoying every moment.

    It was a new chapter for us — Mike’s final chapter. I can’t even put into words how it felt to know this, but it was right about this time I decided my heart would stop when his did. That’s how I would cope with my child dying; I’d go with him. It wasn’t reasonable and I didn’t say anything to anyone, I just believed it.

    We have a family joke that came from something my mother-in-law said back in the 1980s as my husband and I sat down to watch a program we had taped earlier.

    “Oh, I’ve seen this one,” she said. “The guy dies.””

    It’s the family spoiler alert.

    “Oh, hey, you know what happens, right?”

    Yeah. The guy dies.

    We had just 13 days left with him.