It has been said that "true love travels on a gravel road." I can hear Elvis singing it now. But since my last blog the road on this Alzheimer's journey has not been gravel, it has been rocky. And not the delicious rocky road ice cream with all the little marshmallows!
Yesterday when I visited Bob, he had had a grandmal seizure again, and was totally nonresponsive. He hasn't had one in quite awhile. But today I just came from feeding him lunch (not much success). True to his usual form, he was much more alert after the seizure, and it usually remains that way for several days. But the bigger problem is blood in his urine. They got a urine specimen, with culture and sensitivity to see what antibiotics would help. The results were that he had a big infection. This is the third one he has had, which is amazing as he has been incontinent for a long time. Antibiotics worked before, so I okayed a round of them to be given orally. That has been my criteria before, as when an IV is started, it is sometimes the beginning of a slippery slope of going beyond measures that you want to do. I remember when we filled out our advance directives (living wills), I put a big question mark where it said "would you want to be given antibiotics" and so he followed suit. But now the round of antibiotics is over, and after a few days of clear urine there is blood in the urine again, and quite a lot of it. I have been agonizing over whether to okay the start of another round of antibiotics and I have decided not to. One of the big reasons is I know that Bob would not want to continue living like this. I wish the decision would be made easier by him not being able to swallow, but he is still drinking well. I have been taking big glasses of grapefruit juice (his favorite) and cranberry juice for him to drink. Hillside Village has offered to call hospice, but I am so comfortable with their care, that I have opted not to. He was on hospice for 3 years and they are wonderful. Under their guidelines, he would not be given antibiotics, and so now I will choose to let those help me.
Another thing that makes me comfortable with my decision (and I know I alone have to be comfortable with it), is that Bob doesn't seem to be in any pain. There may be something going on besides the infection, but I don't want him put through a battery of tests to find it. A urinary tract infection is usually painful enough in its own right! I have done an informal survey of others in my support group, other friends, hospice nurse friends, and they all say that they have never seen someone with Alzheimer's in pain. Maybe the part of the brain that senses pain is numbed by Alzheimer's? If so, that is the only good part of Alzheimer's I have found.
So I end this month's blog by saying I have placed Bob in God's hands. I have been praying for God to direct this path, so I must take one day and one step at a time. Please keep us in your prayers.
Betty
