View unanswered posts | View active topics It is currently Thu Jul 24, 2014 12:34 am



Reply to topic  [ 16 posts ]  Go to page 1, 2  Next
 fevers in late LBD 
Author Message

Joined: Wed Aug 27, 2008 11:18 pm
Posts: 27
Location: Sonoma, Ca
Post fevers in late LBD
My husband is probably in the late stages of LBD and is now experiencing mostly low-grade fevers several times a week. Occasionally it will go over 100 which sends him into near delirium. He gets a Tylenol supp when this occurs. It also seems to accompany long hours of no sleep and he gets totally exhausted. His mind is 'wired.' He does NOT have a UTI, but I'm guessing he is probably having small lung infections from aspirating. Swallowing is becoming much more difficult. He is under Hospice care but they don't know about the fevers either.

Has anyone's lo had these symptoms?

_________________
Jackie

"Try to be a rainbow in someone's cloud."


Thu Feb 10, 2011 8:24 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: fevers in late LBD
Dale's head sweats constantly and his hands are ice cold. The nurse was here today and said, "Is that why you have a towel under his head?"

The answer is yes. I was tired of changing and washing sweat out of pillow slips. Dale is in Palliative Care.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Feb 10, 2011 8:36 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: fevers in late LBD
My guess is that these fevers have nothing to do with LBD but have to do with some infection going on. I think your guess about a lung infection is right. These fevers happen often to people in the last stages of life. (I'm surprised hospice doesn't know about them.) We commonly hear about delirium from the fever, and swallowing problems. It may be that he will lose the ability to swallow soon.

I hope that your husband's passing is peaceful....when ever it comes.


Thu Feb 10, 2011 9:56 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: fevers in late LBD
My dad had fevers the last few weeks before he died. Of course, he did have an infected pressure sore, that he'd had for at least a year. It got badly infected about 2 - 3 weeks before he died. But the fever was up and down, and his last few days he did not have a fever. Interesting, since he still had the pressure sore and they were no longer administering antibiotics.
The hospice nurse had told me months earlier that unexplained fevers often happened just before people died. I, too, am surprised that the hospice folks didn't tell you this. Ask for their pamphlet on death - it gives list of symptoms from several months to several weeks to days/hours before death. I found it very helpful.
So sorry you are going through this, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Feb 11, 2011 8:40 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: fevers in late LBD
It could be the thermoregulatory system breaking down. When we consider how our Lewy LOs get cold hands or feet and hot faces while maintaining a normal temperature, we can see that the body is still functioning to keep the core temperature [where the vital organs live] normal at the sacrifice of the extremeties, just as happens in shock. But even this compensatory mechanism can break down just prior to death.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Feb 11, 2011 10:08 pm
Profile

Joined: Wed Aug 27, 2008 11:18 pm
Posts: 27
Location: Sonoma, Ca
Post Re: fevers in late LBD
Thanks for everyone's responses. I have since talked with our trusted neurologist and she agrees that the fevers are probably 'silent aspiration' infections. She says they can be treated and that sometimes Hospice considers this palliative because it's making him more comfortable. However, I think I am not going to go that route with him at this point. We are also discontinuing most of the 'dementia' drugs like Excelon, Namenda and his antidepressant. The neurologist says that most of the neural targets are really not there any more and I don't want to keep trying to get pills down him when he's having the swallowing difficulties.
I, too, am praying for a peaceful passing, but he seems to be a fighter. I'm supposed to go away in another week for a family trip which I desperately need, but I'm so conflicted now since he seems to be noticeably declining. It's been a tough week.

_________________
Jackie

"Try to be a rainbow in someone's cloud."


Sun Feb 13, 2011 2:13 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: fevers in late LBD
Jackie, I am so sorry for you and your husband. At this point, there probably are no 'right' or 'wrong' answers about what steps to take. You will be in my prayers.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Feb 13, 2011 2:40 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: fevers in late LBD
Jackie,
It may be that your husband is waiting for you to leave so that he can die. These things are hard to know.
Robin


Sun Feb 13, 2011 2:54 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: fevers in late LBD
I keep wondering if that's what my dad did - waited to see us one more time, didn't want to talk with his grandchildren on the phone his last few days, then waited till we left to die. You never know, but there are many people I know who experienced the same thing with LOs. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Feb 13, 2011 12:25 pm
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: fevers in late LBD
I think you are right, Lynn. The hospice nurse actually told my dad to leave the room for a while when my step-mother was dying because the nurse felt that she would hang on as long as he was there. Finally he did and she was gone within 15 minutes. The mother of a colleague of mine was dying but hanging on, and her hospice nurses told the family to give her permission and say it was okay to let go, because they wouldn't leave her bedside. So they did and very shortly, she finally let go. Maybe it's not that way in every case, but these stories are very powerful.

Julianne


Sun Feb 13, 2011 12:31 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: fevers in late LBD
I have posted this before--sorry for the repeat--but when I was taking care of my father, who was dying from melanoma, I had been up at one point for 48 hours and finally went to bed. My brother and sister sat up with him. An hour later, my brother came into my room and told me Dad had died. I was devastated but I realized later that he probably didn't want to die on 'my watch' because he would be letting me down.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Feb 13, 2011 12:53 pm
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: fevers in late LBD
That could very well be, Pat. I know it was hard for my dad to leave my stepmother, but it turned out to be a kindness to her because she let go. Same thing with your dad, I think.

Julianne


Sun Feb 13, 2011 12:59 pm
Profile

Joined: Wed Aug 27, 2008 11:18 pm
Posts: 27
Location: Sonoma, Ca
Post Re: fevers in late LBD
Thanks again, everyone. My LO is now at 24 hs. plus of 'wakefulness'. No matter what I give him, nothing settles down his wired brain. Constant conversations with 'others', but not much recognition of me. I tried Seroquel, double doses of Melatonin, and even a small dose of morphine. I don't know how long he can maintain this wakefulness. Hospice has been wanting to go the Ativan route, but I don't know how comfortable I am with that. He's exhausted.....and so am I. I'll call Hospice again this morning.

Jackie

_________________
Jackie

"Try to be a rainbow in someone's cloud."


Mon Feb 14, 2011 12:39 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: fevers in late LBD
Jackie, I think I would go with what Hospice recommends at this point. Hopefully you both will get some rest. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Feb 14, 2011 1:01 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post 'wakefulness'
latebloom wrote:
No matter what I give him, nothing settles down his wired brain. Constant conversations with 'others', but not much recognition of me.
What you wrote is so very familiar here. I think Dale is afraid to sleep lest he won't wake up again. We had three nights in a row of constant talking for four hours... but last night, he slept and he was sleepy this morning until about 9 am. I'm so grateful!

Last night, I gave Dale Seroquel 50 mg, Xanax .05 mg, and Gabapentin 150 mg. After about an hour of holding his hand and playing soft music, I got him to close his eyes and try to sleep.

Dale is fully delusional all of the time with constant hallucinations. He is in Palliative Care. This morning, he is trying to get out of bed to do his international taxes.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Feb 14, 2011 1:18 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 16 posts ]  Go to page 1, 2  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr