Waiting for the train to come. (Alzheimer's & Hospice.)

"What's wrong, Mother-In-Law?"

She'd been restless most of the afternoon, but each time she called or squirmed enough to prompt me to investigate, the most she had been able to tell me was that she was "uncomfortable."  I tried to tweak her meds a bit, but I suspected that the duragesic patches which are supposed to be good for 72 hours were running dry half a day early.

She took a sip of water from the straw I held to her lips.  She swallowed, then said: "I was just worried."

"Worried?  What are you worried about - maybe I can help?"

"Well, I think I need to go shopping."

"Shopping?"

"For clothes.  For when I take the train back to college this fall.  I won't have time to shop once I am there."

* * * * * * * * * * * * *

My wife had been napping.  These days, each of us does what we can to get enough sleep, whenever we can.  Because while I write these entries about what I have been doing in caring for my mother-in-law, be assured that my wife does even more in caring for her mom.  So we watch out for each other, try and leave time for napping.

When she came down, asked how her mom had been doing, I told her my suspicions about the patches.  We'd seen evidence previously that they ran out a bit early for my MIL - everyone has a different speed at which they metabolize medicine, even something as supposedly stable as a transdermal patch.  She agreed with my assessment, and we changed the patches 12 hours early.  At worst, the hospice might complain that we had made a mistake, and not to do it again.

I didn't care about that, and I wasn't sure that it would matter - that the end would probably come before we had to worry about a new Rx for the patches.

* * * * * * * * * * * * *

It takes a while for the painkillers from the patches to saturate the system - there's a 'ramp up' period, once they have gone dry.  This is well understood, and we have additional painkillers on hand to help get past the initial stages - what are called "breakthrough" medicines.  We'd given her what we hoped was enough of this when we got her to bed, along with something to help relieve her breathing difficulties.  For a while, she slept fitfully.

Then at midnight she woke, tried to get out of bed.  I heard her (I was on-call), got dressed and went down to see what she needed. As I got her disentangled from the bed rails and onto the commode, I asked her if she was OK.

She looked at me, her eyes watery and unfocused.  I never did get much of an answer out of her, but it was clear from how much difficulty she was having breathing that I needed to do something.  I did - increasing the dosage of the med she takes to control this kind of spasming.  This is what we've been instructed to do by the hospice nurses.

It worked.  After I got her back into bed and settled, her breathing relaxed, and she started snoring loudly.  She snored like that for two and a half hours, during which time I actually got some sleep.  You learn what sounds are good sounds when listening to a monitor at night.

And you learn what sounds are not.  I woke about 3:00 to the sound of silence.  Not even a hint of breathing from my MIL.

I went to check, found her still breathing, but so lightly and shallowly that you could barely tell it, even when standing right over her.

Two more times before I got up at 6:00 I went to check, see if she was still with us.  She was.

* * * * * * * * * * * * *

She wanted to get up for breakfast, so we did that.  But she was breathing and coughing so hard that when she'd finished we didn't even suggest that we go ahead with her normal Sunday morning bath.  Getting her dressed, she was barely able to hold herself upright in the wheelchair.  When we got her into bed her breathing was again stressed, and again we gave her something to help, half a dose.

And then we called hospice.

Lisa, our usual nurse, had told me on her last visit Thursday: "Call.  Anytime.  We don't like surprises."

So I called.  The office put us through to the nurse on call this weekend.  It was Lisa.  I told her how things had gone in the previous 24 hours.

"I'll be right over."

* * * * * * * * * * * * *

"There's significantly diminished lung capacity," said Lisa, setting aside her stethoscope.   Kneeling there next to the bed, her hand gently brushing my MIL's hair away from her face, she looked up at us, then back at my MIL.  "Can you say goodbye to me?  I just stopped by for a moment, and have to leave now."

It took my MIL a few moments to understand.  Then she smiled slightly, and with a weak voice said "Goodbye."

Lisa gave us another patch, this one to help control secretions into my MIL's airway.  Some swabs for her mouth, when it needs moistening but she is unable to drink.  Told us how to arrange the pillows under my MIL to help control aspiration problems.  And that we should freely use the meds which help control breathing spasms, keep her comfortable.  "It'll probably make her even sleepier.  But at this point, that is not a bad thing."

I nodded.

And now we wait.

* * * * * * * * * * * * *

Jim Downey

(Cross posted to Communion of Dreams.)