There are moments of silver-lining beauty concerning my Dad’s dementia. Despite the sadness, witnessing it feels heavy and powerful, as if I’m being imparted some dark and secret magic. There is some meaningful purpose to witnessing him as he goes back to the earth, to lose bit by bit, everything that he was. Fuck if I know what that meaning is, but I can feel it all around me, like electricity in the air before a thunderstorm. I don’t want to miss this, even though watching it sucks. Day-to-day things are more beautiful. Life seems luckier.
But usually, another suck-ass dementia-related thing happens before I can format a coherent thought on the loveliness, and this is no exception.
My mom and dad flew out to California last week, house hunting. They are returning after a year in Oklahoma. My father may have had a stroke while here. His behavior fell off a cliff. Middle was having a hard time crisis-managing my Dad’s cliff-fall and her own newborn baby situation, so I drove up to help.
Dad’s tentative diagnosis is Lewy Body Dementia. Two features include visual hallucinations and personality changes.
That does not accurately convey what it is like to live with a man who wakes in a panic for several nights running, convinced armed burglars are staging a home invasion robbery. It is not enough to assure him otherwise. The house must be checked. Police must be called. Defensive weaponry must be acquired.
Or how he’s so paranoid that every time I call, I hear him saying, “Who’s that on the phone” and blip! I’m on speakerphone. Or, again, how he routinely attempts to escape the house. Or how he’s in a fairly constant state of wet-cat irritation.
Or how my mother is pretty much refusing to act as if anything has changed.
Also does not convey how my father refuses to visit my town because someone at a golf course was rude to him two years ago. It no longer matters to him that my mom is isolated and exhausted. In the moment I spoke to him on the phone, it didn’t matter to tell him I loved him, or that his grandkids were here, or that people who cared for him lived here. He screamed at my mom he would divorce her if she tried to take him where he didn’t want to go. Later, he sent me an email containing only a single word, in the subject line: “sorry.” He’s said that word to me more in the last three months than I ever heard him say it, to anybody, for the 39 years prior.
When he demanded a divorce, Middle and I scoffed, eye-rolling in our anger – like he’s ever gonna successfully pull that business off. But to Mom, this threat was as real and terrifying as if they were newlyweds.
I found a place that offers respite care – a nursing home where they could both check in for a week. There’s a Memory Wing, so my dad could roam indoors and out without fear of escaping the premises. My mom was tentatively optimistic about this option. A week! Like a resort! With cooks and housekeepers and staff sympathetic to their issues! Sleep! Help!
I don’t know what my Dad said to her, but within a day, they were on a plane back to Oklahoma. They escaped my carefully laid plans like some wacky pair of dementia-themed outlaws — Lewy Body & Clyde – on the run and free forever, or some such bullshit, I guess. Via long-distance phone call, Mom told me to cancel all plans for respite care, they would not need it.
***
On the better side of life, I have been wanting to tell you about BlogHer**, which was AWESOME.
I understand now the nebulous ‘It’s awesome, just go,’ statements people gave me before. The real benefit of BlogHer was being in a group of other women who were passionate about writing, and about success, and about other women. It’s kind of this perfect soup of high energy people who happen to have the same interests and who are all saying “yes”, instead of the real world, where people say, “meh.” Plus, there were all these weird and interesting ideas floating between bloggers — ideas I hadn’t been exposed while blog surfing my habitual blog/news haunts. But the awesomeness really comes from the person who happens to sit next to you at lunch, or the conversation you overhear during a coffee break.
It felt fanfuckingtastic to walk around wearing my Anneskin. It was not hard at all to introduce myself as Anne, nor did it feel like I was lying when I did it. It felt like I had slipped into who I really was, or who I really could be. Well, except for when I went to the bathroom and found myself whispering “HolyshitholyshitholyshitI’matBlogHEr!” — I’ll admit right about then I might have been a bit overwhelmed. Sorry fellow peers.
I was also recognized by Ashley at Baddest Mother Ever. She was so incredibly kind to me, and fussed over me and gave me a hug, I felt like an actual internet celebrity*. And then after talking to her for two minutes, realized Ashley actually was a internet celebrity. She was so nice, you guys!
Anyway, if you made it all the way through that post, thank you and congratulations! You win this delightful final sentence. It is a booby prize, complete with complimentary nipple. Enjoy!
*I highly recommend the experience for everyone.
** I went to the Thursday Pathfinder day.
Girl, I have two important words for you:
butt seks
Your legacy is a powerful one, and it drew me in to your orbit. Meeting you was the best part of that whole day. If you had hung around, you would have been the best part of the next day, too!
Oh my gosh dealing with your parents sounds … so, so hard. Your mother will eventually come around, but denial is such a useful coping mechanism – until it isn’t. Can you & your sisters stage some kind of intervention with her, where you’re all on the same page and you insist she admit that she needs help? Or at least realizes how bad things have gotten? Is she a writer like you, where having to write it all down (or seeing it all written down) would help the reality of her life set it?
I’m sorry. You are doing so well. The respite thing sounds awesome – how sad that it didn’t work out. And I’m so glad you had a great time at Blogher!
The therapist keeps suggesting to me that I have meetings with the siblings to figure out schedules and get some help, etc… as if everyone were dealing with reality in, you know, a realistic way.
The respite week sounds like an awesome find … please share it if you can. May need it someday.
Hi Anna,
When you mentioned the siblings thing earlier, I totally brought it up with my sisters. They thought that was a brilliant plan. Thank you!
The respite was offered through an assisted living home. I happened to have heard it in passing a few years ago that the Uppidy Dos in my town who got plastic surgery used the assisted living home as a hide out while they recovered! Sure enough, when I checked it out, it’s called respite care, and although they initially said two weeks was the minimum, they were willing to accommodate a 1-week stay. Hope this helps!
Anne
SQUEEEEE!!!! When Ashley told you that she was bragging to somebody that she got to meet you IT WAS ME!!!! and now I’m shouting at you, and flapping a bit. Stopping in 3 … 2 …. 1.
Smiling for the love you got at BlogHer. You deserve it.
All I have are hugs and a high five. I’m sure you get which goes to what topic.
I’m so happy you went to BlogHer and had a great time! Go you!
I’m not happy your Dad is paranoid and your mom is in denial. I suppose it’s her way of coping, but it doesn’t seem like a very practical one.
My mother-with-dimentia is in hospital with a broken hip, so my Dad-her-carer is having a respite break all of his own, before he goes into hospital next week for back surgery. And here I am thousands of miles away doing nothing at all beyond sending flowers.
Sheesh I can’t even spell dementia.