Pedal Another Mile

Bicycling, death, life after death.

A new day.

First, I'm not going to go into details, but I hope the outsourced company who provides the continuous care for hospice has one less employee today. She was here three times during continuous care time, and twice I am certain she did nothing. Especially today.

Enough of that.

Billy Jo apparently had a peaceful night according to that nurse, but soon after waking was very agitated. I'll give you one guess as to why.

If you guessed that a certain medication to keep her calm and sedated was to be inserted into a certain butt every two hours overnight and in fact, wasn't - you may claim your prize at the front counter.

But enough of that.

Around 11:00, Margaret, the 24/7 caregiver arrived. I like her - she's very nice, and has been on the ball. Since then I have spent most of my time downstairs in the family room. It's a different view. I haven't been down here in so long it seems like someone else's house.

There was a flurry of Hospice activity today. First, I spoke with a coordinator from there. She wanted to know about what happened overnight. After that discussion turned to how I was still very concerned that Billy Jo is suffering, at the very least emotionally, and needs to be sedated properly. She seemed concerned that I was paying out of pocket for a caregiver. She asked that I allow her to talk to her supervisor and get continuous care reactivated so insurance will cover it.

I declined for a couple of reasons:

  1. I don't want to take a chance of that useless nurse in my house again.
  2. It's not guaranteed to be available until she passes. I cannot take the chance that in five days they stop it and I'm back on my own. Nope. I burned my caregiver hat and pissed on the ashes. For MY sake.
  3. If I told Margaret "oh never mind" after I hired her, and then needed her in five days... well, if I were her, I'd tell me to go fuck myself and hang up.

Then she asked if it would be ok to send the doctor over to talk to me about my concerns. I jumped at the opportunity. Erin was here again, thankfully. She was also present when the doctor arrived. He is a kind, warm, gentle man. Like a grandfather i never had (well, I was 1 when my maternal grandpa died). He understood my concerns, he calmed my fears. He told me he was going to do everything he could to make sure Billy Jo wasn't suffering physically or emotionally in her remaining days. He upped the dilaudid and Haldol dosages, and said that we'd keep a close eye on them.

While I stayed downstairs, he went up to visit with Billy Jo. Turns out he knows Margaret well, and told me we are in very good hands. That was a great thing to hear. I know Billy Jo's co-worker loves her and wouldn't have recommended Margaret unless she was good, but hearing the doctor say that sealed the deal - I have made the right choice.

Due to her lack of food and more importantly, water, he is estimating another 7-10 days, with the requisite "don't hold me to that" attached to the end. In any case, he promised me they'd stay on top of her meds to make her as comfortable as possible.

I'm not going to spend too much time upstairs with her. I think just hearing me now agitates her. I'm not taking it personally - I've read that sometimes this happens to make it easier for the dying person to let go - be angry at them. Like I've said, this isn't the Billy Jo I love, the Billy Jo that loves me, so I am brushing it off. It's better for both of us that I stay away more.

Between Margaret and the visit with the doctor, I felt an enormous weight lifted this afternoon. I almost teared up - not tears of grief or joy, but rather relief. I haven't felt relief in a while. I had a tingly feeling all over for an hour.

I am still dog-ass tired, and my current plan is 12 hours+ of real sleep tonight, followed by several hour-long naps tomorrow. Thursday & Friday I plan on doing a lot of work for work. Saturday I may go get that suit and go grocery shopping. Feel normal again. I also need to rest up for the wake/memorial service - that is sure to be draining as well.

But at least my strength tank can finally get some strength back in it.