We had our first Christmas without my dad. As most of you know, I'm a pagan, so I don't celebrate Christmas as a holiday--no tree or anything--but every year I do go to my parents' house and have a big lunch with my husband's family and my grandma, pretty much like Thanksgiving.
Thanksgiving was weird because my dad was alive, but not there. For Thanksgiving, my mother-in-law brought mounds of shrimp cocktail, which was what my dad always ate (he'd eat just shrimp cocktail if given the chance!), and mostly it just sat there. I felt awful because I wanted to pack it up and bring it to him, but of course he wasn't eating anymore and died a few days later, so there was no way he could have enjoyed the shrimp even if we pureed it.
Christmas was sadder, because he wasn't alive or there. And there was the plate of damn shrimp. Does she not learn? Only my dad ate it. My mom had been halfway through decorating for the holiday when he died, and she thought it was ghoulish to have everyone over after the service with her happy decorated house but it also felt stupid to take it all down. My grandmother wanted a tree, so she put it up.
But of course no one really talked about my dad. I don't think people know what to say. My mom did say that she meant this year to be his last Christmas at home--she was going to start looking for a nursing home in January. So none of us knew last year was his last set of holidays. . . but then again, you never know, do you?
It was also weird because it was basically the 1 month anniversary of him dying too--Nov 26 to Dec 25.
His wedding ring is still MIA. Months ago, he went to bed with it on one night and woke up without it. My mom had stripped the bed, shook out the sheets, looked under the bed and still hasn't found it. She did find his old Red Sox hat (the one I wanted to burn with him) and it's on top of his cremains box on her dresser. The hat was hidden somewhere bizarre; I forget where she told me she found it. My husband asked me if I missed my dad and I said no without really thinking about it. And he gave me this look, like "how could you say that?" and I explained, also without thinking about it: "He's been gone a long time."
I have his obituary tacked on the bulletin board next to my desk at work and I just love the slightly goofy picture of him I picked, of him hugging his cat. Mostly when I look at the picture, I smile.
I've talked about grief in general and my grief specifically with some of my friends. Grief is a selfish thing. We're sad because we don't have the person anymore. We're not sad because that person has lost everything s/he loved, sunsets and soft kittens and cold beer (although I'm sure they have plenty of the latter at the Elsewhere Bar)--and that's the true tragedy--but because we have a hole in our lives shaped like the one we've lost.
The hole in me where my dad was isn't even dad-shaped. It's just a blob. As my dad wore away, I became less dependent on him. I needed him less because I was forced to go to others for the things he used to do for me. (Buying a car without him is going to be a nightmare. I'll miss him that day, that's for sure.)
Yesterday, one of my favorite authors, Terry Pratchett, announced that he has early-onset Alzheimer's. (screenprint of announcement) Honestly I think I cried harder over that than I did my father's diagnosis. You know why? Because now I KNOW. With my dad, I didn't know. I knew only what I now call "Hollywood Alzheimer's" (like in The Notebook), which was a sad, gentle thing, with moments of total lucidity and memory recall. Now I know the truth--the confusion, the frustration, the fear, the violence, how it feels when your father looks at you with no recognition and says "Why are you here?" Terry Pratchett, being a funny and upbeat sort of guy, doesn't seem overly upset at the news. In his announcement, he says, "We are taking it fairly philosophically down here and possibly with a mild optimism....Frankly, I would prefer it if people kept things cheerful, because I think there's time for at least a few more books yet :o)" He concludes with, "I would just like to draw attention to everyone reading the above that this should be interpreted as 'I am not dead'. I will, of course, be dead at some future point, as will everybody else. For me, this maybe further off than you think - it's too soon to tell." I have read about half of his Discworld books and own about a quarter of them. They are wonderful, funny and entertaining. My hope for him, if I'm allowed to hope for him, is that as the disease progresses, he thinks he lives there in Ankh-Morpork and forgets this world, rather than vice versa. What a terrible fate to befall someone who has delighted so many people.
(To read the scanned article, go here. The picture posted on the blog is low-resolution.) Basically, to sum it up, Ray Termini (brother of my father's friend Rick) sucked millions out of the Haven Healthcare facilities, leaving them unable to pay their bills and filing for bankruptcy. He took "$15 million in assets from nursing home businesses for 'personal investments'," plus he gave $5 million to his wife so she could buy a $1.5 million yacht and several rental properties in Bristol, Seymour and here in Wallingford. His wife, with those funds, bought a $650,000 home in Palm Bay, Florida, and of course Ray bought his record label for $2.1 million. The CEO claims that he took no "government money" and therefore did nothing wrong. I guess it is perfectly legal to suck a business dry and then claim bankruptcy from the deck of your yacht moored off the dock of your Florida mansion. The article closes with "The nursing home chain has had trouble paying its bill in the last two years. One home ran out of heating oil and others lack supplies such as juice and bandages." Maybe it's better my dad died rather than keep living in such a place.
I always thought the old custom of wearing "mourning" (specific colors of clothing for specific lengths of time, depending on who died) was a silly thing. But I kind of wish it was around now. I feel very emotionally fragile some days. I have problems in public, where it's loud--last night I left a restaurant after eating less than half my meal after a really boisterous family was seated next to me. I dislike children on a good day--and the last few weeks haven't included many of those. This family featured a baby who periodically let out amazing whooping screams. At one point the kid puked and the parents were acting like the child had presented them with a gift. Everything the kid did--good or bad--the parents rewarded with claps and loud positive exclamations. Besides the fact that it's disgusting to sit in a restaurant next to a puking baby, I just couldn't take the noise. When they started to loudly sing along with a Christmas carol playing in the background, I asked for my check and a box and fled. I was thinking that if I was wearing mourning, and the custom was observed still, maybe people would understand why I am quiet and fragile and not really interested in social interaction with strangers. That my lack of interest in my meal doesn't mean it wasn't cooked properly or doesn't taste good. Maybe I wouldn't get stuck next to screaming puking babies when I just want to eat quietly by myself and read my book. I did some research on mourning--the custom, not the emotion. Here's what I found: (from Wikipedia) Wearing dark, sombre clothes is one practice followed in many countries, though other forms of dress are also seen. Those most affected by the loss of a loved one often observe a period of grieving, marked by withdrawal from social events and quiet, respectful behavior. People may also follow certain religious traditions for such occasions....Women in mourning and widows wore distinctive black caps and veils, generally in a conservative version of the current fashion. Of course, I already wear mostly black/dark clothes all the time anyway. But I'd wear a tasteful little black hat with a veil. I look really good in hats with little veils. Look at this lovely hat; if only it was all black. And at the same time, I suffer from terrible guilt. I'm the one who talked to the hospice nurse and gave the directions for my dad's final course of drugs, the ones that sent him from his body forever. Maybe he could have gotten better. (I know he couldn't, but that little voice in my brain, the nay-saying voice, says differently.) Maybe I shouldn't have told my mom to call the cops when my dad beat her up. I should have done more to learn how to deal with his violence instead. We shouldn't have left him alone in the hospital that night so he could fall and start himself on the 79 day path to his death. (79 days. That's all it was. September 9 to November 26.) And I feel guilt because I'm not crying all the time. Because on Sunday I went to a party and laughed and had a good time, exactly 7 days from the last time I saw my father alive. Because when people ask me how I am, I tell them I am all right. Because I am. These dark quiet moments come on me suddenly but they don't last for more than a couple of hours, and even them I'm not usually SAD, I don't cry or anything. I just feel hollow and fragile, like I can't navigate through the world properly anymore. I have my dad's obituary on my desk next to me at work, and I look at the goofy picture of him I choose, and I smile at it. I smile at that father, who was barely in Alzheimer's. I miss that father, but he's been gone so long already. I don't miss the tortured, thin, feverish man I last saw 2 weeks ago. He was no father to me. I went to see him because I hoped some spark of my father was in that body, but I don't believe it was. Even if my atheist friends are right and there's no heaven, no afterlife, no Elsewhere Bar, surely dissolving into the universe has to be better than the tortured last few weeks of my father's life. To be everywhere and everywhen all at once...well, that's the definition of god, isn't it?
My father's 1253-day journey through Alzheimer's Disease (AD) and my feelings about it. Now my aunt appears to have dementia, so this is her chronicle as well. All material is copyrighted by Gevera Bert Piedmont (except where noted and where quoted from other sources); please do not repost without permission.
"The cost of Alzheimer's? Everything you ever owned, everything you ever thought you would get, and things you never even thought about."
"It's a long, slow slide into oblivion, with no brakes."
"If this was a paper journal, the ink would be running with tears."
"Imagine a really beautiful, perfect statue, left out in the wind and rain for centuries, to be worn away, until it’s only retained the shape of a person, not any of the individuality. That’s what Alzheimer’s did to my father. It wore him away, all the sharp edges and crisp points that made him Bob, who loved his family and his pets and his raspberry bushes, and turned him into a fearful person with a vague and confused stare."
"It's a nasty disease, surrounded by shadows and small, largely unseen tragedies."--Terry Pratchett
This is a reminder that Alzheimer's disease affects real people, real families. My dad wasn't a monster, just a man whose brain was slowly eaten by a terrible disease.