Saturday, February 11, 2012


John has slipped significantly, and I realize I have been repressing my reactions.  For me, a lot of frustration and resentment comes up before I ever get to grief.  And I worry that if I complain now I will look back when things get worse and wish I had appreciated how things are now.

For the last six months or so he has been having occasional bowel incontinence, maybe once a week at totally unpredictable times.  He wears disposable underwear when he is particularly worried about it, but he doesn't like to wear them when he is fully dressed with jeans and belt because then he has to undo his belt to urinate instead of just opening his fly.  He did agree to wear boxer briefs (once I cut one layer of the fly for easier access) so the mess would be more contained.  Occasionally the problem is very minor and he doesn't need my help, but often he needs help with his clothes and with cleaning himself.

He finally got the help he needed for his swelled legs, and before he got any really problematic infections.  And the therapist understood that he wouldn't be able to put on compression socks and recommended velcro-closed wraps.  But that means he depends on me to be home to rewrap his legs after he showers.  For the first time I am grateful he only showers twice a week.  Today he said he would be ready for me to wrap his legs at 1 pm.  Instead it was 3:15.

He can still talk to someone and appear just fine.  But I asked him if he wanted to cancel an appointment Monday afternoon--he has an appointment in Charleston Tuesday morning so I will drive us down sometime Monday afternoon/evening.  He said yes and commented that he can't look ahead that way and see the relationship of things.  He is barely hanging in there with a Google calendar to be able to keep track of his schedule at all.  He went to the doctor alone for a urinary tract infection and wanted to get a new prescription for another medication he takes occasionally.  I reminded him to take the bottle so that he could get the same thing but he forgot.  When I picked up the prescription at the pharmacy it wasn't what he wanted (too few days).  He said he would call and straighten it out but when I asked him about it several days later he said he hadn't had time.

He doesn't like to ask me for help, so I get indirect questions when he is hoping I will do something, which just makes me feel that he is expecting me to do whatever extra it is.  Yesterday he asked about recipes to use a lot of frozen blueberries that were accidentally left out.

He drools and his nose drips a good bit.  He tries to carry a napkin, but then he leaves those around the kitchen.  Sigh.

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