We fight a losing battle don't we. I think we are heroic for fighting the battle that we know we will lose. And most of us fight it with such determination. Maybe we are foolish, but like you, Cheryl, I couldn't live with myself if I gave up. Smiles, Nan

Nan, Frank usually sleeps 11-13 hours a night and cat naps most days. We do have the nights when we are up and down all night long but they are fewer than before. He has no physical problems, healthy as can be. His Psychiatrist said it was just the disease, he's also wet every morning, I should say soaked. Again, it's just the way it goes, I never got the feeling he was starting to shut down, I think we have a long ways to go, and hopefully I won't run out of gas on the way.

In my dad's situation, and granted he was 87 when his symptoms got really bad, treating infections and other things simply prolonged his life and therefore his suffering. I think if he'd been living with me, I would have done anything to keep him comfortable but avoided anything that would have prolonged his suffering. I loved him too much to keep him "alive" with no quality of life, but his medical people were totally into quantity at the expense of quality. He suffered way longer than anyone should have to suffer. And consequently, anyone who loved him suffered too. Lynn

Nan,
Sleeping 20+ hours/day would be a sign that the person is in the final stage of a disease. That final stage can last for many months.
Robin

Thanks, Robin. I appreciate the information. He's alert when he's awake...just seems to need so MUCH sleep. This is so different from what he was a few months ago when he would be up and down all day and night. This is actually much easier on me, because he isn't falling when he's sleeping and he's so posturally unsable.

Anyway, I am glad to know ths is not the "end." Nan

Oh, Leone, Dale sound so much like Derek a year ago! But he wasn't sleeping that much at night--he took naps, though. He seldom does now.

I'll bite.... What does he do now instead of sleep? Maybe I shouldn't ask......

If he's like Del, he wanders around the house, teetering and freezing and tippy toe walking. Hard times. Smiles to you, Nan

No, I really do mean tippy toe walking. He starts leaning forward in the walker and finally is walking on his tip toes. He dopesn't seem to realize it. I can use the "march" or "big-step" command and it will work for a step or two and then he is back to the tip toes. It is getting so the walker is a danger to him as it gets extended out so far that he can fall.

I also try to cue him not to lean on the walker which encourages the tp-toe walking. Unfortunately, it's common in advanced Parkinson's Disease. His Parkinson's symptoms are much worse than his Lewy symptoms and predated the Lewy by many years.

Nothing pretty about this, Huh?

Smiles, Nan

At least he isn't walking naked through the house at night with the lights on, across the bay window for the whole world to see. I'll never forget when my dad started doing that 1 1/2 years ago when I was at his house, and who knows how long before I saw him that started! Lynn

Derek can't get out of bed by himself anymore [for which I'm thankful, really] but he does wake up at 4:30 or 5:00 and start 'yelling' [he can't yell but it's his version of yelling], "Help, Help", wanting to get up. And he wants breakfast immediately so we have an early start on the day, for sure. But at least he sleeps through with Seroquel whereas he used to wake up at 2 or 3 in the morning wanting to get up. He's in bed by 9:00.