The running not-joke becomes vacations. Seems like whenever one of us goes away for very long something happens. We know it's not intentional, but it seems so predictable. My family and I go to Washington state for a week in April, and one morning I wake up to the text I hated to see: "Call me when you get up." Mom has somehow managed to pull the end off her dialysis catheter. I am wracked with guilt for being so far away while my brother handles the situation single-handedly. It's not that he isn't capable - he far and away is - it's the guilt of not being there to share the burden, of not having the option for him to handle one part while I handle another. Because that sharing of the responsibility has also become part of our rhythm. The crisis is averted, we fall back into our rhythm.
Spring turns to summer. Mom decides she's had enough of this limited life, and does what she can - she begins working very hard with the physical therapist who comes three times each week. We don't know how much progress she's making until one day we ask to see...and she stands up with the help of her walker. We are amazed, and heartened...until she announces to me that once she's walking again, she plans on driving. A conversation for another day, I think, when I have back up.
Late Summer. The Boy spends two weeks out in Washington with the same cousin we visited in April. We work, we have our weekly check-ins and visits with the parents, we enjoy the season. The last week of summer vacation is to be spent in Canada with my sister- and brother-in-law. We will come home on Sunday, before Labor Day, to ensure the Boy is settled and ready for his first day of high school that Tuesday. Not long after I wake up Saturday morning, I get the text: "Call when you get up." I make the call immediately.
"We are at the ER. She fell out of bed about five o'clock this morning. Waiting to see what they say. I'll keep you posted."
"Should I leave here now?"
"No. There's nothing to be gained by it."
The guilt sets back in. Once again, I'm away and he's dealing with her alone. Himself asks if I want to leave. I waffle but decide that if I needed to be back, my brother would say so. I lose myself in preparing a big dinner for the group coming to the camp that night, waiting for an update.
It comes via text. "Broke her right hip. Going to be admitted to Middlesex for repair." "Should I come?" I'm at least 6 hours away, in optimal conditions. "No, tomorrow is soon enough." I ask Himself if we can leave first thing in the morning rather than the planned afternoon and he readily agrees.
I phone Mom after she's out of surgery and tell her when we plan to leave. We have problems getting the boat properly trailered and after one thing or another, it takes us nearly 8 hours to get home. It's too late to go to the hospital, so we unload, unpack and settle in.
So begins a series of hospital visits, phone calls, alarms and decisions. Over the course of three days, she's had surgical anesthesia, codeine, morphine, Tylenol and oxycodone...but no dialysis. Her last dialysis cycle had ended when she fell out of bed. Monday night the hospital calls to say they think she's had a seizure - gave her Ativan, helped a little, then they tried Narcan. They finally realized that withholding dialysis while still administering narcotics was a Bad Idea. She recovers and is once again responsive to them. Now there are tests. What caused this? Well it seems obvious enough to us, but they do an MRI and CT scan to look for stroke or seizure indications. Finally they start dialysis. She improves, but she thinks she had a stroke, because she heard them talking about it. She struggles to communicate complex thoughts, but can express her frustration. We keep hoping that continuing dialysis while withholding narcotics will improve her state.
Tuesday my brother gets the call. "Does Mom normally struggle to put her words together." "No, she does not." They put her on Keppra for seizures, even though there is no proof she's seizing. They are reaching and we all know it.
After a few days, she's once again able to communicate with us clearly, although at times the sentences and thoughts wander, or are out of context. She's been through a lot. It's time to get her out of there and into a therapy program. She's matched up with an open bed at a rehab and we're told to get her dialysis cycler from her home to the facility so the staff can be trained. Now we are useful once again - we scramble and get the machine, and all the supplies we can load into my truck to the facility...and wait for Mom to be transferred there.
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