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 Hospice 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Hospice
Annie, I am so glad that you and your mother are getting comforting help at this difficult time!

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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


Sat Nov 19, 2011 4:42 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hospice
Annie,
I hope your mother can remain pain-free. Good for you for sticking to your plan.
Robin


Sat Nov 19, 2011 6:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3314
Location: Vermont
Post Re: Hospice
Hi Annie - thinking about you all and sending a big hug your way. It's been a long road for your mom and your family. I hope she can be kept comfortable where she is and not have to be hospitalized. So good that hospice was already on board to support those decisions. Take care and keep us posted. Lynn

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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.


Sat Nov 19, 2011 8:50 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Hospice
It's been a long day. We have the morphine dose right now and she's on a pump that distributes it so there is no pain breakthrough. She has a catheter so after many, many nights no-one will have to take her to the bathroom. She is sleeping peacefully, even without the exelon. Couldn't do a patch due to her sensitive skin. Could have done an exelon suppository but with a broken hip we didn't want to shift her.

It is amazing to me how simple her medication needs have gotten. She can't take anything by mouth and all of her pills have been dc'ed. No hospital, no tests, no x-ray. No pain.

Thank you for your support and good wishes. AnnieN

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Annie, daughter of brave Marie, dx 2007 and in ALF


Sat Nov 19, 2011 9:18 pm
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Joined: Wed Mar 02, 2011 1:11 pm
Posts: 27
Location: Michigan
Post Re: Hospice
There are a lot of references to pain in the posts. Can any of you elaborate on your loved one's pain? My husband often says he hurts all over, and he can't stand to have his left arm moved, although MRI, etc., all come up normal. Is pain normal in late LBD?

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Wife of a 60-year-old LBD patient who was diagnosed in 2003.


Sat Nov 19, 2011 9:32 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hospice
Annie,
I've never heard of Exelon suppositories! Are you intent on giving your mother Exelon because she has hallucinations? If she doesn't have hallucinations, you might consider discontinuing it. Sounds like more trouble than it's worth.
Robin


Sun Nov 20, 2011 1:06 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hospice
I understand the purpose of Exelon to be delay of cognitive decline. That's one reason it's so difficult to tell if it's effective. How can we know how much decline would have taken place without it? My husband is still on the Exelon patch even though in the late stages.

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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.


Sun Nov 20, 2011 1:29 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Hospice
We were trying to continue the exelon because she was hallucinating and they sounded like scary or painful ones. However, that was this morning. This evening her decline has progressed to the point where she is asleep all the time and we don't think she is suffering. Most of her pain (we think) was due to a severe hip fracture when she fell yesterday. We aren't trying to give her exelon or sertraline or thyroid med or anything anymore except morphine and (possibly) lorazapam if she exhibits a lot of anxiety. I think she is past that point and will never need the lorazapam port.

I think this is Day 2 of the final dying process, and the sixth year of her LBD progression. Right now her condition is as peaceful as I could have wished. AnnieN

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Annie, daughter of brave Marie, dx 2007 and in ALF


Sun Nov 20, 2011 2:03 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Hospice
AnnieN, I pray your mom continues to be comfortable and pain free. The end is so sad, even though it's the only way for our loved ones to excape this disease. Hang in there!

Fondly,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Nov 20, 2011 5:29 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Hospice
Annie, my thoughts and prayers are with you at ths time,
God Bless,
Ger xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sun Nov 20, 2011 7:21 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3314
Location: Vermont
Post Re: Hospice
Debry - a year or so prior to my dad's death, he said he didn't have pain when any normal person would have been feeling pain. (he had a pressure sore that was down to the bone during his last year) He'd whack his hands against anything he could find when he was frustrated, having terrible bruising and open wounds that would have been painful for a healthy person but he'd say his hands didn't hurt.
Then in his final few months he felt pain everywhere. Just turning him in bed to change him or give him a bed bath was excruciating for him. He was prescribed a pain patch which he wore on his back and that wasn't enough so he was given morphine "as needed". He needed it more often than it was being administered so I had to advocate for him to have morphine before anyone touched him for any reason, and for it to be given to him regularly, not "as needed" since "as needed" meant that it was dispensed not very often. He basically needed it all the time in his last few weeks. I didn't want him to be suffering from pain at all, so if extra morphine made him sleep most of the time or shortened his life by a few days, that was better than having him lie in bed and have no relief from the physical pain. Nothing was helping the emotional pain......
Hope this is helpful. There are lots of other stories out there too about pain and pain management for our LOs. Lynn

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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 Nov 20, 2011 8:38 am
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