Powerless
Our evening was warm, low key and just right; Gilly was a part of the festivities until about 9:30. He joined us for dinner and seemed aware that he was surrounded by love. I couldn’t get to sleep after everyone left, and Gilly needed my care giving during the night, so I remained in bed until Patty showed up this morning at 11:00. Unfortunately I missed the nurse’s ring at 8:00; I must have fallen into a deep sleep, which is rare these days (someone, who shall remain nameless, forgot to give me the message that she would be stopping by at that hour). She returned later on in the afternoon; what a sweetheart.
Patty, the new (hopefully soon to be ‘most recent’) care giver is happy to oblige with anything I ask of her, but really has no experience with palliative care; her common sense doesn’t take her far enough (which is a polite way of saying she doesn’t have all that much to go on or to problem solve with). I will have to ask Brad if a different arrangement can be made, but he is not in his office until Wednesday. Thankfully, Tamara is spending the week here with me, so between the two of us, I have every confidence that we will manage. I just have to find tasks for Patty to do, but not leave her alone with Gilly.
Josee-Marie suggests I crush Gilly’s medication from now on, because he is not able to take the pills on his own any longer. Gilly requires intense supervision while he ingests his medication, and she feels this is unnecessary. She predicts that I should stop giving him pills altogether in the near future; he will receive medication by injection. She put in what they call a butterfly so that anyone (including me) can give him an injection without having to pierce his skin. It felt like another big step along a rocky path. He didn’t flinch or even awaken as she installed the butterfly.
Late this afternoon we heard a huge bang just before the lights went out. There were about 8 houses on the street without power. We were rather shocked by the way it all happened, but Tamara is very resourceful; she had candles all over the place before I could blink. We realized it would be challenging to handle the situation (for instance, we wouldn’t be able to lower the head section of his hospital bed because it runs by electricity) but knew we’d make the best of it. I had smoked turkey pea soup bubbling on the stove with newly formed dumplings (one of Tamara’s favourites) so we were able to have a warm, nourishing dinner of the comfort food variety.
Tamara tried to feed her father, but he ate very little. He slept deeply with a tantalizing bowl of pineapple set before him, which is a rare event. She followed Josee-Marie’s guidelines; never feed him when his eyes are closed. If he opens his mouth at the touch of the spoon on his lips, it is not necessarily hunger; it is a reflex. We both made a valiant effort, but he was not up to eating most of his dinner. I crushed the medication and he took the whole kit and caboodle in one fell swoop. I suppose I should have done this long ago, but I resist change because it is frightening.
Josee-Marie left strict instructions to inject Gilly with appropriate medication at the slightest sign of discomfort or if he becomes very agitated (the medications are labeled accordingly). She advised me not to wait; inject first and then call the nurse. I’m not confident that I have the guts to do this without consultation, particularly in the case of agitation; I haven’t seen anything dramatic yet, so perhaps I would recognize it if I see it. For pain I wouldn’t hesitate, but so far he has not had any, and it is not expected that he will. I don’t recall ever promising to inject Gilly in my marriage vows.
The power was restored a short while ago. Its time to have a nap while the going is good.
Patty, the new (hopefully soon to be ‘most recent’) care giver is happy to oblige with anything I ask of her, but really has no experience with palliative care; her common sense doesn’t take her far enough (which is a polite way of saying she doesn’t have all that much to go on or to problem solve with). I will have to ask Brad if a different arrangement can be made, but he is not in his office until Wednesday. Thankfully, Tamara is spending the week here with me, so between the two of us, I have every confidence that we will manage. I just have to find tasks for Patty to do, but not leave her alone with Gilly.
Josee-Marie suggests I crush Gilly’s medication from now on, because he is not able to take the pills on his own any longer. Gilly requires intense supervision while he ingests his medication, and she feels this is unnecessary. She predicts that I should stop giving him pills altogether in the near future; he will receive medication by injection. She put in what they call a butterfly so that anyone (including me) can give him an injection without having to pierce his skin. It felt like another big step along a rocky path. He didn’t flinch or even awaken as she installed the butterfly.
Late this afternoon we heard a huge bang just before the lights went out. There were about 8 houses on the street without power. We were rather shocked by the way it all happened, but Tamara is very resourceful; she had candles all over the place before I could blink. We realized it would be challenging to handle the situation (for instance, we wouldn’t be able to lower the head section of his hospital bed because it runs by electricity) but knew we’d make the best of it. I had smoked turkey pea soup bubbling on the stove with newly formed dumplings (one of Tamara’s favourites) so we were able to have a warm, nourishing dinner of the comfort food variety.
Tamara tried to feed her father, but he ate very little. He slept deeply with a tantalizing bowl of pineapple set before him, which is a rare event. She followed Josee-Marie’s guidelines; never feed him when his eyes are closed. If he opens his mouth at the touch of the spoon on his lips, it is not necessarily hunger; it is a reflex. We both made a valiant effort, but he was not up to eating most of his dinner. I crushed the medication and he took the whole kit and caboodle in one fell swoop. I suppose I should have done this long ago, but I resist change because it is frightening.
Josee-Marie left strict instructions to inject Gilly with appropriate medication at the slightest sign of discomfort or if he becomes very agitated (the medications are labeled accordingly). She advised me not to wait; inject first and then call the nurse. I’m not confident that I have the guts to do this without consultation, particularly in the case of agitation; I haven’t seen anything dramatic yet, so perhaps I would recognize it if I see it. For pain I wouldn’t hesitate, but so far he has not had any, and it is not expected that he will. I don’t recall ever promising to inject Gilly in my marriage vows.
The power was restored a short while ago. Its time to have a nap while the going is good.
posted by Gilly at 10:24 PM
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