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Our Last Day with Lewy

As it turned out, Day 120 was not the worst day – Day 121 was.  And it was the last day of mom’s battle with LBD. Mom passed away around 5:30 pm on 23 Feb 2012 – very quickly, very quietly, and with little pain or suffering on her part, beyond the suffering the disease was already causing her. I was with her at the end – touching her, talking to her.  She just stopped breathing.  I suspect that mom, always extremely sensitive to drugs and drug withdrawal, had a reaction to the Sinemet that no one, including the doctor, could predict [ Read more... ]
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Day 120 with Lewy

Well, I keep thinking “this is the worst day we have had” and then another day tops that one. Yesterday was a terrible, no-good, very bad day.  Really.  The worst day I think we have had.  I am AMAZED that mom made it through the two hours of testing on Tuesday. She is in one of those precipitous declines that LBD patients get where the caregivers are shocked at how fast the patient loses the ability to stay awake, eat, or do anything.  But her blood pressure remains good, her circulation is good, she does eat with much coaching, and her elimination [ Read more... ]
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Day 119 with Lewy

Finally, the big testing day that we had to wait four months for.  Cali and I woke up at 4:30 and I gave up and went ahead and got started on the day.  I woke mom up at 6 and it was still a push to get her through breakfast, get her  dressed and made up, and get her into the car.  We hit traffic, as you would expect, but we made it on time. The Psychiatrist surprised me by spending a half hour questioning me while mom was doing the tests.  And for the first time, we got what amounts [ Read more... ]
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Day 118 with Lewy

Monday was not too bad, although she did ring her bell at 1 am and again at 2 am, hungry the second time because she hadn’t been awake enough to eat well the day before.  I got her some yogurt which seemed to take care of things and she went back to sleep until about 9 am. But it was still a pretty bad day.  Cali and I managed to fit in our walk before mom woke up, a practice I think we will have to continue in the future. The Physical Therapist came early as well, just as mom was finishing [ Read more... ]
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Day 116 and 117 with Lewy

On Saturday Mom got up early again.  She seemed to be on her way to a good day, but then after she ate her lunch and I headed off to dance class.  As usual, I left a detailed note on the white board and told her several times where I was going and when I would be back. But mom got confused while I was gone.   She was upset when I returned and told me she had been yelling and ringing the bell and I didn’t come.  (Since she was doing that when I walked in, I had pretty much figured [ Read more... ]
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