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JeanneG
Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1037
Location: Minnesota
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 Re: Gabapentin Leone wrote: Drugs are such a mixed bag. Leone, you are a master of understatement! My bipolar brother takes Xanax for panic attacks/anxiety. Is it also useful for delusions? It is helping Dale? I guess not enough, or you wouldn't be posting as you are. Are you building that dose up gradually? I don't know anything about Gabapentin. Does that have to be built up gradually, too? Is it supposed to be used as-needed, or on a regular schedule? It sounds like you need something to minimize delusions, something to maintain sleep, and perhaps something for pain. No wonder it is complicated! I think we have discussed this before, but maybe in the current situation it is worth bringing up again. If Dale's sleep disturbances are a result of RBD, discussing Klonopin with the doctor might be worth a shot. It won't help with the hallucinations (which is why Coy takes both Klonopin and Seroquel) but wouldn't it be nice not to be awakened by dreams at 2 in the morning? Hang in there!
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Jeanne, 66 caring for husband Coy, 85. RBD for 30+ years; LDB since 2003, Coy still at home, in early stage
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| Sun Feb 13, 2011 3:45 pm |
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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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Re: Gabapentin Dale's bipolar son, who died in prison two years ago, took these drugs as well. No, I'm not building up toward anything. Dale's mind is constantly delusional. I don't think that will change. He is now in Palliative Care which precedes hospice.
What I wish I could change is his constant need for me to be beside his bed. I'm not a very good caregiver. His conversation rarely makes sense anymore. Just two minutes ago, he told me our sons were in the room. My son lives in California and his son is dead. No medicine will cure that. That is dementia... and it is terminal.
GABAPENTIN is used to control partial seizures in adults with epilepsy. The hope is that it will help Dale's back pain.
Dale is now in bed all the time. He can no longer sit up, stand, or walk without a tremendous amount of assistance. Even with sanity, that has to be boring. Earlier, he asked if I would drop him off at the mall so he could buy a Valentine for me.
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
Last edited by Leone on Mon Feb 14, 2011 5:57 am, edited 1 time in total.
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| Sun Feb 13, 2011 5:29 pm |
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Gerry
Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Re: Gabapentin Leone, Dale still has that sweatness about him, lucky you.  Happy Valentines Day. I made a pan of brownies in a heart pan, I know Frank will enjoy the brownies but I don't think the heart will have any meaning.
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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.
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| Sun Feb 13, 2011 5:40 pm |
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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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Re: Gabapentin Yes, Gerry, Dale is still sweet and kind. He just doesn't understand that having me beside his bed all of his waking moments is asking a lot. It's not that I'm not attentive. I give him a bed bath, I brush his teeth and shave him, I change his diapers and his catheter, I feed him about five times a day, and I answer his calls every 15 minutes. I exercise his legs and give him an ice pack for pain. I'm doing things for him constantly. In fact, the last three nights, I've sat by his bed and listened to his non-stop delusional conversation until I was reasonably sure he was falling to sleep.
He would not be getting this sort of attention in a nursing home. That's for sure.
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Sun Feb 13, 2011 5:54 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3008
Location: WA
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Re: Gabapentin That's very true, Leone, he wouldn't. And it wouldn't set him back one little bit. I've certainly learned that! I did all those things when Derek was home, too. His requests were unending. I honestly didn't mind doing them most of the time but was always totally exhausted by the time I got him in bed. He would still be talking after I kissed him goodnight and left his room.
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Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Sun Feb 13, 2011 7:04 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3008
Location: WA
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Re: Gabapentin PS: Actually, the nursing home does do most of those things. They don't move him every fifteen minutes and aren't as watchful for his unspoken requests as I am but they do all the other things, usually with two aides helping him.
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Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Sun Feb 13, 2011 8:25 pm |
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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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Re: Gabapentin What I was trying to say, Pat, is that Dale does take advantage of me because he can. I'm not being critical of nursing homes. However, I've heard the calls for assistance in nursing homes that basically go unanswered for a while. My mother was one of the worst offenders. She called for help constantly.
I'm conflicted. Part of me says this is the end and I will be happy that I took good care of him and answered his every call. However, it is exhausting, as you said. I am trying to strike a balance.
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Sun Feb 13, 2011 10:37 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3008
Location: WA
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Re: Gabapentin Leone, I know you were not being critical of nursing homes. The point I was trying to make corroborates what you just posted: They do just fine NOT being waited on hand and foot. Derek is not demanding of the staff at the SNF the way he was with me at home or as he is when I'm there. And when he wants me to transfer him, I put on the call light and tell him I'll get 'the girls' in to help and he often declines. So I hear you, loud and clear! 
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Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Sun Feb 13, 2011 11:48 pm |
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robin
Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Re: Gabapentin Personally, I'd stick with a med that you know worked at one point -- Seroquel. 50mg/night is a relatively low dose. I'd increase the dose before I started a new med. My (layperson) two cents.
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| Mon Feb 14, 2011 12:53 am |
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Gerry
Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Re: Gabapentin Pat and Leone, Do you think they know what they're doing? I'm never sure, When Frank can't follow a simple request like stand up so I can pull you pants up or put your arms out so I can take your shirt off. I know that he probably can't process, immediately, what I'm saying but so often he looks at me like I'm speaking another language. We see his psychiatrist today, we'll see what he says.
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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.
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| Mon Feb 14, 2011 6:32 am |
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irene selak
Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1941
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Re: Gabapentin I agree sticking with what you know is tolorated is probably best, I am not a fan of constant change in meds !
Honestly asking others is hard too because so many react so differently, what works for one doesn't always work for another !
Good Luck!
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| Mon Feb 14, 2011 7:13 pm |
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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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Re: Gabapentin update The visiting nurse was here today and she asked whether Dale had been given the sleeping aid I had requested. I showed her the Gabapentin and she was annoyed. She said that was not what either of the nurses had suggested and she was puzzled. She will look into the problem.
All sorts of questions are in my mind. Who made the decision to give us the Gabapentin and why? It's expensive... and it caused a problem rather than solving one. I re-ordered the Seroquel. It makes more sense to go back to what we know.
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Mon Feb 14, 2011 7:18 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3008
Location: WA
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Re: Gabapentin Gerry, that's a question I've been asking myself for a long time. How can I know if my husband is not understanding a command or is simply unable to follow it? Or, does he not understand a question or is he unable to find the right words to answer it? So frustrating for both of us!
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Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Mon Feb 14, 2011 8:38 pm |
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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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Re: Gabapentin mockturtle wrote: Gerry, that's a question I've been asking myself for a long time. How can I know if my husband is not understanding a command or is simply unable to follow it? Or, does he not understand a question or is he unable to find the right words to answer it? So frustrating for both of us!
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Mon Feb 14, 2011 9:51 pm |
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nandel8
Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
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Re: Gabapentin Me, too. I do not speak Lewy. Nan
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| Tue Feb 15, 2011 12:01 am |
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