Sometimes it seems like it just doesn’t stop. I’m not complaining, but it does make me wonder where my breaking point is…I got stress going on from all fronts:
- Started a new job: I really, really, really like my new job. It’s a great role and I’ve moved completely into the mobile space — no more website testing for this guy! But I’m also out of my comfort zone, and it’s a big company, and, and, and…
- Home: I am currently without a home. Thanks to the generosity of my brother, I am crashing on a couch…in a single-room apartment…with a smoker…and the couch is too small for me. Now, no doubt, I’m grateful for his generosity, as without this, I would be dumping tons of money on a hotel room or some such nonsense, but still…
- Relationship: Sunshine and I are still going strong, coming up on 8 years this month. But of course, she is still down in Jacksonville, while I’m up here trying to find a new place to live and get settled into the new job. I miss her desperately, and the puppies too.
- Family: and right in the midst of all of this, my Mom passes away.
Feh. Clearly, someone is trying to test me.
Mom had a major stroke sometime during the night of Tuesday, January 14. Her partner of ten years, Warren (yes, grok the irony of her managing to connect with Yet Another Warren), found her unresponsive the morning of the 15th and called the paramedics. She then spent the next ten days in the ICU, slowly recovering. As a function of her stroke, she had very little mobility–she couldn’t move her legs, some limited movement in her arms, she couldn’t swallow and she couldn’t speak. And she had a confluence of other issues: she had completely occluded vision due to cataracts (she was scheduled to get surgery for them on the 27th of January), unmanaged diabetes had ravaged her system, and she struggled with congestive heart failure.
The doctors called us early in the process and asked for permission to put in a breathing and a feeding tube. She tugged these out several times over the next week, sending what my brother and I thought was a very clear message. Still, the nurses dutifully put everything back together as Mom struggled to recover. They ran various tests and were giving her Cumadin injections in the hopes of breaking up the various clots they’d seen.
Having just started my new job, I was strapped for resources, and needed to get things together so I could fly out there. I was just hoping Mom could hang on until then.
Her doctors were very pessimistic about her long-term prognosis. Her unmanaged diabetes had left her system weakened and vulnerable. One of the results of this was the congestive heart failure, which she struggled with over the last year–her heart was operating at just 15% efficiency. Testing also revealed a massive clot hanging out in her heart, lurking like a ticking time bomb.
This left her in a very precarious position: if her heart failed, they could likely recover her with the paddles, but that event could very well cut that big clot loose, precipitating another major stroke. And with a weakened heart, attempting any kind of physical therapy that might get her some level of mobility back was too risky.
Having finally managed to scrape together some resources, I bought the cheapest flight I could find, as her 70th birthday passed on the 24th.
On Friday the 25th, her partner Warren was visiting her, and was greatly heartened by her apparent progress. When the orderly came in to take her blood pressure, she immediately raised her arm when asked. When Warren mentioned my brother’s name, her eyes opened wide. He told her I was on my way, and her eyes darted around. Things seemed to be improving.
That Friday afternoon, I spoke with a nurse about moving Mom to a skilled nursing facility: this was under the working assumption that if she was going to recover, she would require a lot of therapy, and that could only happen in a skilled nursing facility. The nurse said she would try to get Mom moved that afternoon–when I arrived in San Diego, Mom could very well be in a nursing home, working on getting better. Everything seemed very positive as I climbed on a plane Saturday morning.
I got into San Diego late in the afternoon, called the hospital and told them I was on my way. Jenn’s folks (Pete and Shirley) picked me up and took me straight to the hospital.
When I arrived, Mom looked very bad. She seemed like she was deeply asleep, and she was gasping for air, struggling in a way that can only be described as “desperate breathing”. I asked the night nurse, who basically knew nothing, having just come on shift and not having worked with her throughout the week. He said that she’d been sedated and that she would rest throughout the night.
I decided to head out and return the following morning when the day nurse would be back on duty–at least she had had the opportunity to work with Mom and to have spoken with the doctors. I made the assumption that she would be able to tell me more about her progress and prognosis, and during the day I might even have a chance to chat with the doctors themselves.
When I returned the next morning, her breathing was the same desperate gulping (with the added bonus of sounding like her throat was full of fluid) and she seemed no more likely to wake anytime soon. I hung on until the day nurse was doing her rounds, when I got hit with the following bomb:
Friday evening, after Warren left, Mom had experienced some breathing issues and as they worked to relieve her stress, she fell into “obtundation”, which then progressed to coma. Two neurologists had evaluated her, and deemed her completely non-responsive, calling out that even much of her autonomic responses were not functioning. For example, when they suctioned her throat to pull out the fluid, they jammed a half-inch bore plastic tube into her throat, and there was no response at all (there should at least be an autonomic wincing at the invasion).
The day nurse, whose name was Tina (with an odd long-I pronunciation, like t-eye-na), said that with the way things were progressing, it was unlikely that Mom was ever going to come out of the coma. She pointed at the discoloration of her fingers and toes, and a reddish mottling climbing her legs, as indications that several systems were in the progress of slowly shutting down.
Suddenly, the conversation went from talking about recovery to talking about comforting her through to the end. I spoke with the skilled nursing folks, who had been told that the doctors explicitly blocked her move to a skilled nursing facility after her breathing distress. I made an appointment with a hospice care nurse, and we discussed options available to Mom. Soon, I was signing papers putting Mom in their care, and she was moved to a private room, one with a bed for me as well.
I went out for a short while during her move. When I returned, I found Mom in a much more peaceful environment: the feeding tube had been removed, and she’d been given a slight morphine drip to ease her breathing distress. This worked exactly as advertised; her breathing settled way down and she seemed more at ease.
The hospice care nurse came in and explained all these things to me, and told me that I should make myself comfortable and plan on being there the whole night. They even brought food in for me.
I then spent the next ten hours just talking to my Mom. I talked about lots of things: recent things in my life, like Jacksonville and poker. I told her about Sunshine, and the puppies. I talked about the years and things she missed: Australia, Poway, Pt. Loma. The separation and eventual divorce. Jenn’s and my wonderful year of 2006. Mission Boulevard, the band, screenprinting, OB and Spring Valley.
I talked about Dad. About my brother Bob, and his daughter Amanda, and her son James, whom Mom had never met (I haven’t met him yet, either–something I need to address). About our weirdly broken family and our apparent inability to stay in touch. I told her how distant I am from my own kids, and how much I miss them, and how powerless I feel to change how those things are.
I asked her about the early years: those years in Philly on 5 Brookline Boulevard. I asked her about “Priscilla”, an apparent family friend and my babysitter when I was 4. Priscilla had two monstrous little daughters who routinely falsely accused me of all kinds of awful things, and I clearly remember Priscilla screaming at me and stomping me in the face, repeatedly, on several occasions. I can even remember what she was wearing during these attacks. (This is the person I hold responsible for gifting me with the deep burning anger that I seem to not share with anyone else in my family.) I asked her about all the weird little half- and un-truths, the hero stories and the furtive little laughs. I asked about her brothers and her father and her mother and her oh-so-murky history. I asked about my father (Warren) and her current partner (Warren). I asked about everything I could think to ask about.
And, of course, I got no answers. But at least I’d asked. Not knowing wasn’t any different than it had been for the last 44 years. I’m just glad I got the chance to ask, even if I didn’t get answered.
I wound down after several hours, and just watched her breathe. I tried to distract myself, with little success. I think I napped, I picked at the food, and futzed with the non-working television controls. After a while, I gave up and just sat, watching her breathe.
Around 4 am, I noticed a bit of spacing between breaths. After a while, I noticed that spacing getting slightly longer–she would exhale, and at the bottom of the exhale, she would pause, and then take her next breath. During the pauses, I started counting, and holding my breath with her. I could see her pulse in her neck, it seemed strong and strident.
At one point, Mom’s primary nurse, Douglas, peeked in. I held up a hand, asking him for a moment. He came in as I continued to count. Mom took another breath, as did I. He said “What’s up?”
“That was 42 seconds.” He raised his eyebrows at me. “42 seconds between breaths. The pauses have been getting longer. I can see her pulse in her neck, right along the cheekbone.”
He turned to Mom as she exhaled, and again, she paused. I counted.
He said “I’ll be right back.”
Mom exhaled, and paused. I counted. And never stopped counting.
When I got to 200, I noticed that I couldn’t see her pulse anymore. I didn’t remember Douglas coming back in, but he was standing over her. I looked up at him, looked at the clock, and said “4:42 am. I’m calling it.” He nodded. He checked her pulse, used a stethoscope on various points, listening for any remnants of life. He shook his head and then said “I’ll be right back” and left.
He came back with the head nurse, who proceeded to go through the same checks as Douglas had, except this woman was weeping the entire time. I cried some too, but not too much.
She finished her tests, and looked up at Douglas, nodding, tears breaking off her face and onto her scrubs. She looked at me and said “I’m very sorry for your loss.” She then stalked out of the room, sweeping Douglas out with her and leaving me alone with Mom.
I stood next to her bed, stroked her hair, and cried some more. After a while I kissed her head and decided I needed to try and get some sleep. The head nurse had me sign some papers, and I drove back to Pete & Shirley’s place (where I was crashing). I was coming in just as they were heading out–we briefly spoke of what had happened. They had hugs and condolences for me.
The next day was a whirlwind of paperwork and heading out to Mom’s place that she shared with Warren. I managed to get her affairs in a general sort of order, such that I didn’t need to extend my stay.
That evening, I finally got to meet my good friend Sufyan’s new wife Zala. She’s a dear.
Flew back to the east coast the next day. Took the day after off to finish the administrivia and fill a drool cup. I had hoped to take the week off and drive down to see Sunshine, but the car started acting up. Oh yeah! Stress point number 5:
- Vehicle: the fully paid off 170,000+ mile Honda CRV apparently needs about 2k in repairs. Or not. We’re not sure.
Back to work Thursday and Friday. Most of the office was down sick all week, so I didn’t miss much. Really, could’ve taken the whole week and vegetated, but it just felt like a bad idea.
And now, here I sit.
Hmm. That was cathartic. Should’ve done this a while ago.
* * * * *
[Edit 2.3.2012] As I finished typing the above, I went to save my work and found that my website host (BlueHost.com) had gone dark, and I went through a few minutes of sheer panic, thinking I’d lost all my work. Thankfully, I was able to dredge all of the writing out of the browser’s cache and save it locally. I then spend the next 90+ minutes pounding on BlueHost, waiting for them to come back online. Once the server was live again, I posted this immediately and then headed back to my brother’s apartment, as the Starbucks I was in was about to close and the snow had started coming down at a serious rate.
So I didn’t really get a chance to read through it and edit it. I’m doing that now (it’s done already), and am adding these few points of color…
In retrospect, I regret FaceBooking the events of that night. Not just because now I’m getting inundated with mortuary ads, but because FB in general is gauche and attention-whorish, and I think I could have done better by Mom’s memory (see above).
BUT: wow! Do I know a lot of caring, compassionate people. So I got way more attention out of the event than I’d ever expected, but I also found out that lots of my friends had fond memories of Mom. This was soothing and cool.
Another point is one my brother made in his own FB post about the event–namely, it is utterly imperative that we all have our affairs in order, that our wishes are known and that we have contributed everything we want to contribute to how we are to be treated after we all have passed. If you’re living in sin, or an alternate-lifestyle relationship, please please PLEASE make sure that your partner is given Medical Power of Attorney. Please make sure your partner is registered as your domestic partner in accordance with the laws of your locality. Or just get off your ass and marry them already (if you can, I know many who can’t and I continue to fight for those rights along with you all).
Because without the benefit of these things, they have ZERO RIGHTS. Hospital staff are predisposed to defer to family and next of kin, and you’re only family if you’re blood or legally made that way by some form of union or rights assignment. The ways in which Mom’s partner Warren was excluded made my brother and I sick with worry, and it could have been easily avoided.
Just remember: it’s the ones you love the most whose grief you’re saving when you do these things while you still can. Make your wishes known. Write them down. Get them notarized. Declare your partners. Resolve your affairs. If you want your body to go to science, contact the appropriate authorities and make it so, or say it in a Living Will. If you are taken desperately ill and want to be clear about your desire to be (or not be) resuscitated, SAY SO.
Because otherwise the ones you love will be forced to make those decisions for you, and they will agonize over what they do not know,and haunted by their choices.
Mom donated the bulk of her remains to science, which we know she wanted. It would tickle her pink to know that she had helped someone, either as a tissue donor or simply via research. She is currently being cremated, and her ashes will return to Warren. We did not write an obituary, and we did not have a service: these are both things she was explicit about.
Everything else, we had to guess. Warren is currently combing through her effects, to see if there are any hidden policies or accounts or even pictures or other mementos. He occasionally scans a picture he finds, and he seeks guidance in where things should be sent. Mostly, to Goodwill, we say.
I miss my Mom, in a weird kind of abstract way, because it’s seemed like I’ve always missed my Mom. Throughout my adulthood, even when Mom lived with me and my family, there was always a kind of distance, a stand-offish-ness that I think was yet another expression of her childhood.
Mom had adulthood thrust on her at a very early age, having to take care of her younger brothers all while having to endure the hateful hands of abusive nuns and meddling intentions of clueless social workers. She never wanted to be a burden to anyone, she never wanted to be contextualized as an obligation. This caused a fierce independence in her that she struggled to maintain her whole life, at times more successfully than others.
I think at times that independence went too far, and became a kind of isolationism. I see it in my brother and I; but of course, we also share defects from my Dad, and his insistence on being left alone as well. Steadfast loners, we Langills are. It’s something I have to deliberately fight and face up to every day. “It’s a constant battle, this creeping negativity,” as the wise Doctor once said.
But still, I miss my Mom. I wish I could tell her I love her, one more time, just to make sure she heard it and knew it.
If you can, you should go call yours now, and tell her you love her. I’m sure she misses you.