|Morning ritual: coffee and lap time with Stinker|
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 firstname.lastname@example.org 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
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|
|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.