Piper/ / Charla

[Guest guest]

Gosh Piper, reading your post brought tears to my eyes. You went through a lot

with your dad and I'm so glad you were there for him. He was so l lucky to have

you.

Sending hugs your way,

Courage

Re: / Charla

Hi, Charla,

I am so sorry you are having to go through this with your dad. I understand

when you say it is harder than you could have ever imagined. My dad was in

a similar situation at the end of his battle with LBD. I had no idea what to

expect so it was kind of a scary time for me. The time frame is so hard to

tell because every patient is so different. Dad ate several bites of pudding

or ice cream for three weeks, and the last week, he could just intake a tiny

amount of water through a syringe. He couldn't really swallow, but the

water absorbed in his mouth, enough to keep his mouth from drying out

completely.

When I changed his undergarment the day before he died, it was clear that

his kidneys were beginning to fail badly. They usually say no more than 36

hours at that point. Dad lasted about another 24 hours. There was no death

rattle like I was expecting. I didn't notice the molting on his legs until

after he had passed so it must have happened just shortly before he died. His

breathing had become irregular that morning. We had hospice coming to the

house, but he was their first LBD patient so they didn't know as much as I

did.

All this happened on a Saturday so I was having to explain all this over

the phone to the hospice nurse. The irregular breathing wigged me out as it

seemed like he was in distress. I was able to give him some seroquel in liquid

form under his tongue, and it seemed to calm him. He seemed to be more

comfortable after that. Looking back, I wish I had been more prepared to know

what to do to keep him comfortable all the way through. I am sure your hospice

has more experience with this than mine did. Sorry to be so long winded

about all this, but I just remember wanting all the information I could get at

the time so I might know more of what to expect. No matter how prepared you

are, when the time finally comes, it is still a shock. I will be thinking of

you, and keeping you and your dad in my prayers. We are here for you when

you need us.

Sending you big hugs and lots of strength,

Piper

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