Wednesday, December 4, 2019

This One is Laden with F-Bombs


Morning ritual: coffee and lap time with Stinker
Dear friends-

Had been waiting for Doug's return from the Big European Adventure with Camron and Timmmii to post, which extended to after Thanksgiving, and here we are.

Tl;dr- The Shit is Hitting the Fan

Doug has dramatically slowed down and requires a fuck-ton more assistance to move through life. He uses a walker in the house to get around, and takes many very long naps daily. We are thankful for so many things, including the fact that his appetite remains big, he has no major body pain and uses no opioids, and has zero nausea. But his mobility is severely limited now, sight is fuzzy, and confusion is greater. Leaving the house is a once a week thing. He needs help getting dressed, taking baths, making a sandwich, locating his water bottle, etc.  We are adjusting around it all and trying to stay calm but that doesn't always happen.

NB: We are limiting visitors quite a bit since he is sleeping so much of the time. Small pockets are still possible, but less of them. The mood can be dolorous, so go with it if so. Please keep coming to visit.klowntown@gmail.com to schedule visits, and many thanks for your patience because it won't always work for a thousand fucking reasons. Also, he isn't really using his phone much, and email not at all. I screen when I can and read sweet things to him that pop up. Lastly, I keep coming across people IRL who painfully admit that they have not reached out at all because they didn't have the words. Let me encourage you now. YES YOU DO. As long as its positive, supportive and succinct, YOU DO. So send away. It's about the gesture. You are not bothering us! Just can't always reply. This is one of many big lessons learned about grief and coping, so passing that shit on.

And way up front here, I want to show my deepest gratitude to the many friends who are are elbow deep in this with us, offering  strong counsel at a time when big decisions constantly need to be made. Because of those conversations, lots of great things are on deck:
  • In-home care kicks back in Tues-Wed-Thurs while I go to work and
  • Hospice is coming here to assess our sitch and will take over all of Doug's care
  • Many, many subscription services Doug can no longer use are being shut down and billing halted (thanks, Tina!) Getting this kind of minutiae handled is tedious af but so necessary and a giant weight lifted
  • We are Writing Things Down regarding the kind of memorial service he wants, and that is good
Clara just turned 16. Doug was able to pick out a gorgeous pendant from one of our favorite jewelers, Pave in Rockridge, which designed our wedding rings. We bought her a citrine stone ringed in diamonds on a necklace as the big gift to mark the occasion and she was beyond touched.

And she is really maturing even more through all of this. She is helping me do more things around the house because she sees how overwhelmed I am and is integrating upward with me. The sisterhood-like bond that is developing between us blows my mind on the daily. Clara has a serious goof-ball side so we find ways to express that with Doug as much as possible. She says the most touching things, always via SMS, and my heart stops in a good way. This see-saw of emotion is making the wild ride all the crazier, but see-saws have been kind of the norm in our whirlwind chosen lifestyle so....

One of the things she typed me the other day was about how "...we will be happy like before again", and I believe her.

Being a mother trains you to deal with intense caregiving but doing it for your spouse never stops sucking. For instance, sitting down for more than 10 minutes at a time doesn't happen unless Doug is sleeping. My hot flashes flare like crazy and he is always cold so adjusting the Nest is a constant. And Doug just feels humiliated by how much he has diminished and how little he can contribute, even though we constantly try to reassure him. Hugs bring tears. Yes, we are doing Google Hangouts with the psychiatrist weekly and yes, we have amped up his depression meds. Coping all the time, while feeling the doom grow, is fucking exhausting - so this additional help is timely.

It has been less than 6 months since this bullshit situation took hold, and already I am nostalgic for how much easier things were in September. We purposefully jam packed a LOT of trips and experiences in when we knew Doug could do it all. That all came to a screeching halt a couple of weeks ago. The whirlwind may have worn him out, but that is the calculated risk we took. Sitting around waiting on cancer to sink in really wasn't an option.

And yes, Doug had the trip of a lifetime with his two buddies- and the scenes he shared from the Scottish Highlands showed how much fun they all had. (I won't say more on this- watch for a blog post with lots of pix about the trip soon. It was all over Camron's and Timmmiii's Insta)

klown, bunny, klown

The trip was planned and paid for nearly a year ago. We realized Doug would be flying home solo late in the game, and that was not going to be a tenable situation for anyone. Neal Kaptain made the brilliant suggestion that I fly over to meet up with Doug in London, and attend the huge London Burning Man Decompression party going on at the same time that the boys were going to already, then fly back with him. Our great friend Yomi, the Londontown perma host and old skool drum & bass DJ was scheduled to spin at 1am. Eight rooms of techno, 1400 people, and Scumfrog was gonna be there! So I bought a fast ticket and made arrangements to be in London for 52 hours to collect Doug, doing a deep long afternoon hotel transition from Timmi and Teiwaz to me, then catch a late night rave, see the Christmas markets, and hustle Doug back home. Having that time on the plane with him was magical, too. We talked about so many deep things, which I journaled, and made plans for Clara.

On the plane, Doug talked about how much he missed Clara and I while traveling. He repeatedly said  that all he wanted to do was snuggle with us and watch movies when he got home. His days of going downstairs to the Klown Bar are over, so I decided to buy a huge, cozy sectional couch (with two power recliners) and a big new TV on a rolling stand so that we can have a new nest upstairs. i was delighted to realize, that, finally,  the universal remote works as advertised and many streaming services can be cast from phone to TV with one click. Yay for (long hyped) working technology!

Doug listens to Xmas CDs while Young Timmmii and Clara are on the couch
This was the right call. We are more physically connected now that we have plenty of space to sit together with room for visiting friends. And we have a list of movies to watch as a family and as a couple. If you have recommendations of good classics we should watch with Clara, please sound off in the comments! We just showed her Repo Man, Donnie Darko, Rocky Horror Picture Show and IT The Second Chapter to give you an idea of the kind of content we are thinking about (edgy and thought/convo provoking).

Doug's mother's brother Frankie, his wife Judy, Rachel the wife of Doug's Dad Jerry


Kelly the wife of brother Deron, daughter Emilia, daughter Eloise and our Clara

This microsuede nest came in handy since we hosted three sets of Doug's family over Thanksgiving, and had a grand time doing it. His dad and brother were in town with their families, along with his Uncle Frankie and Aunt Judy, who are Cajun- born and bred in Baton Rouge. They brought pecans from their backyard for pies, and all kinds of seasonings to make a gumbo out of leftover turkey and Louisiana sausage. Doug said it was the best he had ever had- the roux was out of this world! Many laughs were had, and everyone helped us keep the holiday low stress by helping me pull it all together. I am so glad Doug had that time with his kin and that Clara had more chances to bond, too.

More good news: YES! There WILL be a Christmas CD mix again this year. For the past 16 years, Doug has been designing holiday music mixes and making marketing mailers out of them to send to all his real estate contacts, which includes so many folks in our friends and family sphere, too. Thanks to the big audio assistance of Tim Pratt and his super talented illustrator Robyn Adams, expect a new mix to come out soon! And if you want to get into the spirit NOW, here are links to all the mixes he has made over the years from his work website.

In summary: Things are getting darker, slower, quieter and more real. I am gearing up for it and so is Clara but again, trying to stay as present as we can while Doug can still crack jokes, share laughs and snuggle on the couch. He is so lucid in so many ways! But this is some serious fucking bullshit. I am doing as much yoga and pilates and power walks as possible to stay in shape for this wild ride because it requires so much fucking strength night and day.  Crying for me now happens 2-3 times daily and sometimes uncontrollably. If I really want to work out some of the sadness, I just listen to Luther Vandross on Spotify super loud in the Benz with all those speakers. Major downpour. Or get on a plane. I lost it in Heathrow. Ellie from Virgin on the LHR > SFO leg saved me with buckets of champagne in first class as she arranged seats for me and Doug together and made everything ok.

And I must close this post by repeating how deeply thankful we are for the tight orbit of companions, confidantes and counselors who are shepherding us through a time of fear and struggle. We know there is a light at the end of this fucked up tunnel, we do. May we get there in a less speedy fashion.


32 comments:

  1. Love you all so much. These updates - this one in particular! - bring tears to my eyes and on down my face. Reality kinda sucks in so many ways and this is one of them, but the way you are sharing these days and nights and trips and tears with everyone is SO needed, appreciated and important. For the three of you and for all of us. Thank you for doing that. As for movies, I’m not sure how it came to be for me but my “reset” movie is The Station Agent. I’ve seen it dozens of times and I’m still not entirely sure why. I just love the people in it. And Christmas can’t come and go without us watching Holiday Inn. So throw that one in there as well. ♥️

    Hang tough y’all. Love you so much.

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  2. goddamn this is so strong. thank you for sharing all of it. love you all. also we just tuned out on Home Alone: its the junk food of movies, but holds up

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    1. Hi there- who is this? I want to thank you and will tee that movie up for sure. It is hilarious and now a classic.

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  3. I found "Mandy" to be a simple straight-forward story, yet beautiful and thought-provoking. May be a good one for the list. Plus you can't go wrong with Nic Cage. https://www.youtube.com/watch?v=rI054ow6KJk

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    1. Thx Eddie! Will show her this weekend. THanks tons!

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  4. I am so crying right now reading this. I don't know you all that well, but I am here for you in whatever capacity is possible. I am thinking if all of you and look forward to your updates, no matter what the content! <3

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    1. Hi there! I am not sure who left this comment so if you see this just lemme know and we can thank you!

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  5. Big hugs and love to you and Doug and Clara Mae!

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  6. Your strength, presence, and courage in the face of all of this is beyond amazing, Candace. Please give Toad a squeeze for me....and thank him so much for my Ouchy sticker! It made my day when I got it in the mail! :-)

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    1. He says "oh good" Kim. Thanks for the sweet words and please take a photo of where that sticker ended up and I will show him!

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  7. I was expecting more F- Bombs. Tell Doug I fucking love him. Pinch Ouchy's fucking nipple too. "Mr. Toad's Wild Ride is a dark ride at Disneyland Park, also formerly located at the Magic Kingdom". Ain't that the fucking truth.

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  8. Great, now I'm bawling at work. Doug's first CD stays in the Christmas bin, even though I ripped it years ago. Remains my favorite holiday soundtrack to this day. Thank you Doug, you're one neat dude.

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    1. Oh Suzy! That is sooo cool. Glad you are still enjoying that one. Hope you dig the next one. Thanks for all your care and concern. I am sitting with Doug on the bed reading these comments and he chuckled and said your name out loud when I told him about this!

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  9. Thinking of you all. Looking forward to Doug's next Christmas medley. ::much love:: -Roxanne

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  10. Oh my heart. We love you guys so much! Sounds like the Europe trip was fab. We will be listening to those Christmas mixtapes for sure. Thank you for taking the time to share the effed up situation. We think of you daily. Love: Robin, Dean, and Tom

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  11. I recommend Confessions of a Dangerous Mind, but you'll want to give Cora Mae a little background info about the bat-shit-crazy Gong Show. Also Wings of Desire is quirky/otherworldly and thought provoking.

    Like all your friends, my love goes out to all of you. The breadth and affection from all your friends says a lot...about you.

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  12. Thank you so much for the update, Candace. I'm so grateful you were able to go on these adventures and spend Thanksgiving together with family. Happy Birthday to Clara! That sounds like an amazing party and how cool to hear how much she enjoyed Moulin Rouge! She's really very talented in movement/dance and it would be awesome to see her explore performance further some day!

    What a whirlwind of a few months..a testament to your big love,courageous resolve, and exceptional skills. Yes it hurts so hard. My gratitude goes out to all the people supporting you up close, only a few of whom I've been able to thank in person. You are all amazing people and deserve all the love coming your way. With more love, Rebecca Evans

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  13. Love you DOUG!!! Hoping Guy transmitted our City Center BNI love to you this afternoon! You're missed hardcore in that room and your presence is felt!

    This morning, between presentations, we rattle off many jokes - 95% of which were terrible~ buy hey, you're irreplaceable! Here is the meme I shared, though you'd get a kick out of it!

    Petco is hiring. The manager says to the applicant, "we are looking for a CAT-person." The applicant looks at the manager in the eyes, slowly and intentionally lifts her hand toward a stack of papers on the managers desk, and pushes them off. She gets up and walks out the door, and as she does, the manager exclaims, "YOU'RE HIRED! YOU'VE GOT THE JOB!!!"

    Thank you Candace for sharing and keeping us as close as possible, supporting you from the edge of the circle. Love you Doug - love to you Candace and Clara!

    And how about Twin Peaks...

    ~Dr. Joie

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  14. Hi, Doug: I am so sorry I have not had a chance to visit. I want you to know that you've been a special friend and I am so grateful to know you. Enjoy the holidays and know that the Smiths love you very much! Robb

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  15. Hi Doug,
    I want you to know that I feel really shitty about spoiling the ending of The Force Awakens for you. I feel like I already apologized for that at the time but when I saw you at NewMoonie reunion rather than give you a big hug I thought maybe you were still mad about that and just smiled and gave you space. There are a bunch of clowns down here in LA that are inspired by you whether they know it or not and I try to tell them in a non-boomer fashion when I can. You inspired so much fun and art that I loved but probably was too busy laughing and smiling about to thank you for. But well thank you. And consider this a digital hug placeholder till I can give you a proper one.
    Much love,
    Nate

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    1. Hi Nate- I am sure Doug held no grudge over a stupid movie ending- he forgets that kind of thing anyway. And we have heard about the Hell-A Klowns. Much sexier than us but hey, it's Hollywood. Thanks for the sweet words.

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  16. Love to you and Clara, Candace. You have been so strong and taken care of Doug so amazingly well. I am so sad for his loss, even though we weren't close. Love to you both. I hope the next time I see you I can give you a big bone cracking hug.

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  17. Oh, also, Gentlemen Broncos is one of my all time favorite movies.

    -Wendy

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  18. Oh Doug, you were always so helpful when I bought my house in 2010, and with questions in subsequent years. But it was thru KS & Camp 'n Sons & such that I knew you more... I had been planning to reach out to you Candace in the last one month to share info about this place in San Diego, a retreat I thought may benefit Doug. I'm just so sorry. Much love to you and Clara. - Kaylynn

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  19. I am so sorry for you loss. I hate that phrase, but don’t know what else to say. Doug was my Kid Bro’s best friend in elementary school in Dickinson! I think the last time I saw him was 1971. But we reconnected on FB, I would have never pegged him as coloring outside the box. Boy was I wrong!
    Please take care of yourself. I will be in California in a few months and would love to give you a call.

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    1. Hi Cindy- thanks for these nice words. Doug really did blossom later in life. Please look us up when you are out this way.

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  22. I am reading through all the blog posts as I had NO IDEA Doug was sick. I am so so sorry all this has happened to your family and wish I could’ve helped in some small way. I would love to bring some food for you and Clara, please let me know here if that’s doable (and likes/dislikes/requests), or I will explore the ‘visit’ email and meal train link.

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    1. Hey Shelly- very sorry you found out late in the game. Happened super fast and I tried really hard to keep the shitty news off social. Meal train is kind of dead but just ping me on FB and we can arrange something. It would be great to reconnect.

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