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 Normal temperature but he prefers a cold room 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Normal temperature but he prefers a cold room
I don't see this behavior addressed in any other postings.

Dale has a normal temperature but his head is warm while his hands and feet often feel cold. He prefers a room that is 69 degrees with the ceiling fan operating. He wants no blankets and won't even permit a sheet on him. He is almost naked with a diaper and thin undershirt. On my side of the bed at night, I have four thicknesses of blankets... because of the cold.

He is almost always delusional and has hallucinations. He cannot sit up or stand. He lies on the bed playing with his diaper. He talks endlessly about how much exercise he does or other such nonsense. This afternoon, he said he needed to stop playing cards. I'm not sure where that came from because he hasn't played any sort of card game in recent years. He also had a meeting with George Soros. (Huh?)

He continues to want to try to get out of bed and stand. When he tries, he shakes all over and only manages to raise himself on one elbow.

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


Mon Jan 31, 2011 7:34 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Normal temperature but he prefers a cold room
Leone, have you called his neuro about his recent condition? Maybe it wouldn't be a bad idea. Sounds like he's really taken a nose dive.

If he's been talking with George Soros, I hope he gave him a piece of his mind! :lol:

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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 Jan 31, 2011 7:38 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Normal temperature but he prefers a cold room
Leone, regarding the temperture thing ... I kinda think that Coy's thermostat is broken. 8) We keep our house 69 days and 66 at night. I generally wear a sweater by day, and warm jammies by night. Some days Coy does too. Some days he takes off his shirt and turns on the ceiling fan. He never wants all the blankets at night. His hands are always cold, but it doesn't seem to bother him.

This afternoon I got an email from the Adult Day program manager explaining that she tried to get Coy to wear his jacket going home but he insisted he didn't need it. (It is 15 degrees and snowing here now.) She was afraid I'd think they were negligent. I told her that since he only had to go a few feet to get into a warm car this battle wasn't one worth fighting. Maintaining a warm relationship with him was more important.

I don't think I've read about this, either. I've just assumed it was one more function controlled by the brain that Lewy is messing with. It will be interesting to hear about this from other caregivers.

On the topic of Dale's decline, my heart goes out to you. This is so hard to watch even from afar. You must be in great pain. As others have suggested, keep his medical providers informed. Are you considering a hospice evaluation?

Hugs to you, dear lady!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Jan 31, 2011 7:52 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Normal temperature but he prefers a cold room
Part of the autonomic system is thermoregulatory function. This controls the body's temperature and "sense" of how hot or cold things are. The autonomic system malfunctions in PD and atypical parkinsonism disorders.

These compromised sensations of being too hot or too cold, or needing the room a certain temperature are all normal in LBD. One person (woman) I know treats this with hormones.


Mon Jan 31, 2011 8:03 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Normal temperature but he prefers a cold room
Sort of like treating hot flashes, Robin? :shock:

Since Coy is already taking a bucket of pills each day, I don't think I'd be inclined to treat this. He seems to be able to deal with it by adding or removing clothing and blankets. Left on his own, he might be in danger of frostbite, hypothermia, etc., outside in the winter, but he is never left on his own outside in the winter.

But it is interesting to hear that there is an approach to consider if this is a serious problem. Was the woman you know extremely bothered by this disruption to normal temperature sensing? Are the hormones effective for her, do you know?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Jan 31, 2011 8:13 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Normal temperature but he prefers a cold room
Yes, Dale's neurologist is fully aware of his current condition and so is his primary doctor. They are now fullly engaged in obtaining a hospital bed for him. The neurologist said they would 'set the wheels in motion' for additional help for me as well with a group called Palliative Care which is part of the insurance network we have. They are connected with a local hospice.

They also made contact with the Psychiatrist and when I said I could not get Dale to the car, they said they would send a transport van.

Hopefully, all this will happen this week.

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


Mon Jan 31, 2011 8:21 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Normal temperature but he prefers a cold room
Thanks, Jeanne, for telling me about Coy. It's nice to know we aren't alone with this behavior.

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


Mon Jan 31, 2011 8:23 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Normal temperature but he prefers a cold room
Leone, as you may remember, Derek's thermoregulatory system has been 'broken' for some time, only he is usually too cold rather than too hot. His face is usually hot, temperature normal, hands ice cold. Once in a while--like today--he was trying to take his clothes off even though the room was unusually cool.

Glad Dale's doctors are planning to do something for him even if it's just palliative care. At least they will deal with the pain. I hope! Hugs, Pat

_________________
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 Jan 31, 2011 8:31 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Normal temperature but he prefers a cold room
Coincidentally, I received a barrage of phone messages from my mother late this afternoon, complaining bitterly that her room at the SNF is too cold and she doesn't have any warm clothes. She used to get too hot! This cold thing has just started over thos winter. It is ridiculous because they keep the SNF plenty warm. A lot of times, she is sitting there in chinos and a short sleeved polo shirt, complaining of the cold, and she won't even put on a sweater. She thinks I am being insensitive unless I fuss over her like a toddler about her every complaint, so it is very trying.

I have given up making sense of it. She just refuses to ask the staff for help with anything, so she calls and calls and calls me. I called her back after I was done working and told her to ask the nurse to turn up her room's thermostat if she is cold. She acted like this was a totally new concept, though I have told her the same thing so many times. I have to remind myself that the rules of logic flew out the window a long time ago.

I am looking forward to spring because then my sister will come out and visit for a week, giving me a welcome respite.

Julianne


Mon Jan 31, 2011 8:52 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Normal temperature but he prefers a cold room
Leone, Fran has the same problem, one minute cold, next hot. His hands are always cold. All I do, especially at night, is take off the blankets, put them back on, etc etc. Bernie Living in the fast lane of Lewyland.


Mon Jan 31, 2011 9:14 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Normal temperature (Pallative Care)
Leone, Del is on Pallative Care also...has been since last September. As I understand it, Pallative Care is the stage before they admit you to Hospice. In our area it is generally assumed that the lifespan of someone getting into Pallative Care is 2 years or less. Hospice is 6 months. Of course these are all fairly loose timelines as many live longer or shorter times...but it generally presupposes that end of life issues are now needing to be addressed.

I have found the Pallative Care program to be both a help and a hindrance. They were dull as can be in issues regarding dealing with his RX plan and how the plan requires specific wordings, but they were wonderful at getting us in to see the doc when we needed to...they were able to cut through a lot of red tape very quickly.

I hope you will find them helpful. Take care...Smiles, Nan


Mon Jan 31, 2011 9:37 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Normal temperature but he prefers a cold room
Thanks, Nan. I'm still in the 'learning curve' and appreciate any confirmation I can get. :P

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


Mon Jan 31, 2011 9:47 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Normal temperature but he prefers a cold room
Yes, the woman with autonomic dysfunction is very bothered by cold temperatures. The hormones are effective for her.

Because the ability to sweat can also be compromised in PD and atypical parkinsonism disorders, many with LBD cannot tolerate hot temps or humid climates. We have several people in the local support group who use ice vests during the summer to keep from overheating.


Mon Jan 31, 2011 9:50 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Normal temperature but he prefers a cold room
Dale is now asleep on a hospital bed. The bed arrived late this afternoon and the excitement was too much for Dale. His mind went into overdrive and he thought there were people around who were waiting for him to give a speech. He insisted that the speech be taped... and he launched into talking non-stop for about an hour. I have finally got him quieted down ... with his usual Seroquel.

He also complained of more than usual pain and asked for an ice pack on his lower back and hip on one side. The ceiling fan is on and he is lying on ice. It's not my idea of comfort... but it must be his.

Just before he went to sleep, he wanted to get 'out of this thing.' I'm hoping he doesn't try to jump out of the bed during the night. He can no longer stand so he won't be able to get up from the floor.

Because the bed is closer to the bathroom, he insisted that I remove the night lights ... That surprised me because he always wanted night lights everywhere.

Let's hope we have a calm day tomorrow. I'm expecting a phone call from a nurse from Palliative Care arranged by the neurologist .. to set up a time for a visit to assess the needs of the situation here.

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


Tue Feb 01, 2011 9:24 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Normal temperature but he prefers a cold room
Leone, right now Fran is sleeping in full dress, pants, sweater, shoes and socks. Said he is so cold and it will save me the trouble of dressing him tomorrow. Isn't that sweet of him. Although I can bet that as soon as I fall asleep, I will have to undress him because he will be too hot. Bernie


Tue Feb 01, 2011 9:56 pm
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