Note: this is an excerpt from An Ordinary Death: Where Grief and Relief Hold Hands, available from Amazon.com.
Rough morning. Restlessness and discomfort predominated for at least an hour and a half this morning. Mother is minimally conscious, eyes half open, but unfocused, but she can still hear and nod her head yes or no.
I suspect we’re going to have to give her both the pain meds and the anti-anxiety meds more often now. I have to recognize that she will not converse with us any more, even in that “orientated/disoriented” state that she has occupied since the stroke. Another part of her gone, only to reside in our memories.
Both my brother and I had a hard time with this today–watching her so restless and clearly upset, but unable to tell us what is happening. I wonder if she’s suffering from morphine psychosis. I’ve personally seen this in older people before where the administration of morphine causes nasty hallucinations, rather than good pain relief. I’ve about decided to try to stay on top of the anxiety with the lorazepam and just hope the fentanyl patch does the job for other discomfort and see if we can leave off the morphine. So difficult to balance this when she can’t tell us anything and all we can do is look for signs of discomfort and hope we read them correctly.
I keep trying to move our hospice coverage to continuous care but am not getting very far. The apparent pain scares me and I don’t like to have to manage this without more professional help. And then there is the whole breathing thing, the pronounced sleep apnea. Hard to listen to. She just stops. And then I start holding my breath until she starts again.
I am also suffering from a major lack of sleep myself. Just couldn’t to sleep last night, and very much feel it. I feel lightheaded with fatigue and with these imitative breathing patterns I’m doing.
I had intended to spend today and tomorrow at the very least at the church taking care of things so piling up there, but it won’t happen. I have this mental picture of myself tossing one thing after another off my desk and to-do list like live grenades getting ready to explode, but all these incredible people manage to catch them, defuse them, and competently handle them. I am extraordinarily fortunate.
And I keep asking the question: how do people do this who don’t have some of the resources we have? I hope to begin to explore this more later today.
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