The End of Life in Black and White

The last 48 hours have been a fire hose of experiences. Strange Mom arrived on Tuesday and I have been struggling on the steep learning curve of care-giving. I’m quickly learning that 24 hour care-giving has very few similarities to providing medical treatment. There are medications to manage, but there are also basic needs to provide for and comfort to give. And these things have to be provided to someone who is dealing with their own emotional consequences of the changes they’re experiencing. I had a flash of a thought before Strange Mom arrived that it would be a bit like caring for an infant, but as Potnia Theron wrote in her own post, it is nothing at all like caring for an infant. I’m grateful to Potnia for articulating that so beautifully.

In the mean time, I have been checking Facebook much more frequently than I ever had. Reading about my brothers’ exploits and looking at pictures of my baby cousins. Someone tagged me in the sort of social media “challenge” that I would normally roll my eyes at, but somehow now feels timely. The challenge is to post seven black and white photos over seven days, without explanation. This experience has been so foreign for me, and so unexpected, that I thought I might use the opportunity to record what is happen. If only for my own reflections. I’ve been sharing them to Instagram, but I will also post them here for those who follow me here. The instructions of the “challenge” say to post to the photos without explanation. I named the photos, but I’d like to eventually write a little about how I was feeling when I took the pictures. I’ve posted three days of picture so far.

Day 1 – Anticipation


Day 2 – Respite


Day 3 – Fulfillment


Dealing in the Dead of the Night

hospital bedI woke up about an hour ago to the sound of Strange and his mother snoring in perfect unison. He’s in the bedroom and she is semi-reclined in a hospital bed in the living room. Last night, I fell asleep on the couch next to her. I woke up an hour ago to find that she’s removed all of her blankets and completely disrobed. Naked as the day she was born.

When I last blogged, we were in deep conflict with the hospital over what to do with Strange Mom. Leaving her in Florida wasn’t an option. Their proposed options were signing her out AMA or a plane trip to our home that they quoted at $30K+. The conflict got worse before it got better, and then ended suddenly Saturday evening. The plane trip didn’t actually cost $30K. The Saturday social worker had called and it only cost $14K. That was well within the $15K budget we had set aside for her emergencies. Fast forward to Tuesday and she’s lying naked, in a hospital bed, in my living room. I didn’t have a particularly close relationship with my mother-in-law before this, and now our relationship consists of her lying naked in my living room while I lie (clothed) on the couch next to her.

I’m lucky to be navigating this all with a physician husband, but also shaken. We’re both educated, and he works in healthcare, and I have felt like I can barely figure out what’s happening at any given moment. All of the adrenaline and cortisol and stress of  getting her here crashed suddenly this afternoon as we sat at the kitchen table with the hospice nurse, waiting for my mother in law’s arrival. In the void, it left the reality of having her here. She’ll need to be cleaned and fed and medicated around the clock. The nurses will visit three times a week. Some people will also come and play her music, a chaplain will visit, and there’s a health aide who will also stop by. They’ll call me to make appointments. Medicare will cover all of the supplies we’ll need for her to die in our home and the hospice nurse left us with more narcotics than I have ever seen in my life. What is not covered in our county, is non-home hospice. This came as a surprise to us this afternoon after being told over and over that Medicare covers hospice. Turns out, care in a residential hospice facility will cost less than a nursing home, but more than I make in a month. I can only chuckle to myself at my own naivete. For years, I’ve been writing about the intersection of family and science. For years, a common refrain among the people that read my blog has been the difficulty of paying for child care on a junior scientist’s salary.   Child care seems like a drop in the bucket compared to the cost of elder care.

This means some very difficult conversations to come in La Casa de Strange because Strange Mom literally has $2 to her name. We’re blessed with a decent income, but we also have five children. Two of those children are in college, two are in daycare and we have another home that we’re trying to sell in another town. Can we squeeze the money out of our budget to also pay for in patient hospice? Whose salary can we afford to do without? Who’s career is the least likely to be impacted if they took leave to care for Strange Mom?

And what the hell am I going to do if she poops?