H!GGY December 10, 2022 No Comments
Lara was usually heavily meditated.
Lara was usually heavily meditated.

This photo is from 11 November 22 (her shirt says “Heavily Meditated”) and it was the last time I made French toast and eggs for her. What follows isn’t a chronological update of Lara’s condition so much as an expression of my thoughts and some of the symptoms which I have yet to insert into other updates. It is a retrospective of sorts and I’ll begin with her symptoms.

Between her advancing condition and her medications, she often hallucinates and many of those hallucinations can be as real to her as the people who are actually in the room. One day I was helping Lara with medicine and she motioned to an empty chair and asked if we could “ask Mr. Zero Zero to kindly leave the room.” So I asked him if he would and then asked Lara if he was going. She told me that he said he would go after he was finished with something in a few minutes. But he was being polite about it. Another time she told the nurse that sometimes when she’s stretching she’ll be talking to her dad and her mom and others and then when she turns her head they’ve all vanished. Once she even told me “it’s so weird talking to a twin.” I asked her who was the twin she was speaking to and she laughed at my question playfully, smiled, and said, “You’re such a mindfucker.” There are many more examples.

We found out that the pressure sores Lara had are actually one big Kennedy Ulcer (or Kennedy Terminal Ulcer). I don’t advise that you Google this, especially if you’re squeamish. In a nutshell, these are ulcers that can develop as a patient’s skin starts failing. As a reminder, your skin is an organ just like any other in your body. It bears the distinction of being your body’s largest organ. In not following my own advice, I learned that many people say KTUs are just used as euphemisms by hospitals and other caregivers to conceal neglect. Add this to the list of “What-Ifs” etched into my psyche. What if I had gotten to the hospital sooner last summer? What if I had rolled her over in the middle of the night every now and then despite the agony it might have caused her?

I never thought I would need to know how to administer medicine to a sleeping patient. But here I am, using a syringe to deliver morphine and Ativan and methadone to the mucous membranes of my wife’s mouth every four hours, around the clock whether she’s awake or not.

I slept beside her last night because she told me she has missed me as I was getting her back to her hospital bed after the 2:00 medicine and bathroom break. I held her hand most of the night and held my body as close to hers as I could. Speaking of bathroom breaks, anytime I take her to the bathroom I have her hug me around the neck so I can lift her to her feet from her chair. Then we shimmy towards the toilet. I like to tell her to dance with me because that’s what it feels like we’re doing. I swear, sometimes she melted into me as if we were falling in love all over again. I relish those embraces and let them linger as she continues to take her baby steps.

I like to tell her to dance with me because that’s what it feels like we’re doing. I swear, sometimes she melted into me as if we were falling in love all over again. I relish those embraces and let them linger as she continues to take her baby steps.

Because it triggered me at Thanksgiving, I taught myself to play “Stand By Me” on Ruth’s guitar. Mostly just the bass part. But sometimes I play a simple melody that follows the vocals, “so darling, DARLING sta-annnd—”. One afternoon I played it while sitting beside Lara and she fell asleep to it.

Now comes a chronological update, I spoke to a hospice nurse today and she advised me that Lara is “actively transitioning” to the next phase and will start “actively dying” soon. No one can predict anything, of course, so timelines are best estimates based on knowledge, symptoms, and experience. The hospice team believes Lara could enter her next phase within 24 hours and spend anywhere from 24 to 48 hours in that phase.

She is not in pain. She is surrounded by love and care. If you like, you can leave something in the comments for me to read aloud to her (I am told that hearing is our last sense to go). Or, if you prefer, you can DM me something to read to her as well. Or you can send videos I can play for her.

We are hurting here. For Lara’s sake. For each other. I’m sure you are too.

I’m often asked how I am. I’m okay. But as I said, I am also hurting. This pain is unlike any I have ever known. I am reassured by countless friends’ and family members’ words of support. I’ll quote one in particular:

“The highest honor I can give her is if you can look back in five years and say, ‘I met Lara and she taught me how much I deserve, how much I could love and be loved, so I went after all of the things I thought were out of reach before she molded me’.”

The dichotomy of my existence—that of an effusive husband and a sober caregiver—is winding down. I’ve been saying from the start of this journey that I don’t know how to live life after Lara and that I’m not sure I want to.

I’m not saying that I’m looking for bridges to jump from or seeking out opportunistic “accidents” . . . I’m just saying that the life that Lara and I shared together took a lot of effort and devotion and my reserves are nearly depleted. My friend’s aspirational words have helped me understand that Lara wants me to keep my head up and my standards high. That she wants me to take care of myself with the same loving kindness with which I have taken care of her. I know my darkest days are ahead. I’m not naive. I guess my first order of business will be to remember how to smile without the rotten feeling of enjoying things without Queen Higgy by my side.

Originally shared on Facebook.

Read the other Lara Logs:

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