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 Sitting issue 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sitting issue
Your doctor will consult his drug reference and decide where to start him if he chooses to prescribe it. Since it is a combination drug, it is dosed as, e.g., 10/100, 10mg carbidopa/100mg levodopa, which would likely be a starting does, possibly three times a day. Hope it helps--with Lewy, you never can be sure but usually Parkinson-like symptoms respond well to this drug. The downside is often increased hallucinations and delusions. We have found, though, that reducing his Sinemet did not result in fewer of these effects and only made his mobility worse.

_________________
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.


Sat Jan 15, 2011 1:35 pm
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Re: Sitting issue
The 'taking care of myself' is what I am worried about. There are times when he gets down on the floor and I cant get him up. I am 5'8" and 140 lbs, he is 6'2" and 220. When this happens, he is dead weight and I can do nothing. I have had to call people to get him up out of the floor. 2 weeks ago, he stopped walking all together. So I got someone to help me load him up and I took him to the ER and we stayed in the hospital for 5 days until he could walk again. So,if the Sinemet could help to regain any mobility, I would be happy.I have already hurt my shoulder by pulling on him. And turning him in bed at night is almost impossible. I have no help, except from friends and church family that I can call on. And they arent always able to drop everything and come to the rescue. I know this sounds like I am trying to dope him up, but if he cant move and I cant move him, then medication may be my only resort. Sometimes it is so hard to know the right thing to do. My mind tells me one thing and my heart tells me another.


Sat Jan 15, 2011 1:54 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Sitting issue
Quote:
I know this sounds like I am trying to dope him up
NO! To me it sounds like you are struggling trying to find ways to preserve/improve his quality of life. This difficult task is hard enough and heartbreaking enough without adding guilt to the mix. You are making the best decisions you can, with love and caring intentions, and with going to the trouble to seek the input of other caregivers with similar experiences. Most of us will never know if our decisions were "right" -- whether the course of the disease would have been easier if we had made some other decision along the way. All any of us can do is the best we can with what we know at the time, in our particular circumstances, in love with the best interests of the LO in mind. Drugs can very definitely contribute to the quality of life, but sometimes they can detract from that qualtiy. And often you won't know which outcome to expect until you try the drug. Remember that quality of life also includes things like being cared for by a spouse or child instead paid strangers, so doing things to extend the period that is possible is also a valid, loving decision.

This is very definitely not about doping someone up for your own convenience. It is about making difficult choices in love and with compassion, and without assurances that the choice will produce the desired results.

Take pride in what you are doing, even if you cannot take joy in it. Hang in there!

_________________
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 Jan 15, 2011 2:20 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sitting issue
Mistyeye,
We might've discussed this elsewhere.... Can your husband tolerate Zyprexa? It's anti-dopaminergic so could be causing some of the mobility problems. But if he needs it for psychosis and you've tried Seroquel, then "never mind."
Robin


Sat Jan 15, 2011 2:24 pm
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Re: Sitting issue
Robin, thanks for the question. the short answer is I DONT KNOW!! Let me give you some background that got us to this point. I knew that Jerry had LBD for several months before dx. In August of 2010, he had run away from home twice. (Didnt get far,just down the street a little.) The 2nd time, I took him to the hospital because his oxygen sats were low (86-87). When i got him to the ER they laid him back and he stopped breathing. He has COPD (chronic bronchitis) and had pneumonia at that time. They started to knock him out and put a breathing tube in. Then they took him to ICU, where he remained combative. They had already given him Morphine, which makes him hyper. I told them this, but they continued to give it. When this didnt work, they wanted to give him Haldol. I told them no, not at all. Well, since he was in ICU, they made me leave for the night. When I got back early the next morning, He was confused and scared. They had given him the Haldol anyway, to settle him down. Well, 2 days later they released him to come home. We got home about 10:00 am and was back at the ER by 9:00pm. He was hallucinating so bad he was out of control. He was admitted to the dementia unit, called Senior care. While there, for the first 3 or 4 days his hallucinations were off the charts. He was said to be psychotic and delusional. He was having hallucinations about a great lobster invasion, complete with bombing them with jet planes. There were several others just as horrifying for him. The Dr there is a psychiatrist. He was the one who prescribed the Zyprexa. I read up on it at the time, but they insisted that it was the drug he needed. (Jerry was there for 4 weeks and I was never allowed to visit with the psychiatrist.) They added the Aricept and Namenda after the delusions and hallucinations stopped (about 2 weeks). I firmly believe that it was the Haldol that caused it. Because he threatened me while he was hallucinating, they called child protective services (our grandson lives with us), and adult protective services, when I refused to admit him to a nursing home. I brought him home mid Sept 2010. He did great for a while. His brain was on rapid fire though. We bought a used camper with 3 slides and built a small building on some property that we have out in the country. Finally things settled down to a pretty normal routine. Then about early November this mobility thing started. I hadnt read enough about the Zyprexa I guess. He has been taking 10 mg twice a day since coming home from Senior Care. Since coming home he has been retaining fluid really bad. This is new. Also his blood sugars are thru the roof all the time (300 -400). He has never been on Seraquel. Do you feel this would be a better choice? I am beginning to think maybe he isnt tolerating the Zyprexa very well.
Now I am really getting confused. Just when I think I have a handle on things, the bottom drops again. Any thoughts would be appreciated. As I said in the earlier post, he refuses to see the neurologist because of the distance. And he is in complete denial about the LBD, too. Just thinks he has the COPD and diabetes.
Sorry this is so long, but the more info, sometimes the better...


Sat Jan 15, 2011 7:54 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Sitting issue
They call the dementia unit "Senior Care"??!!!

Is there any legal action that can be taken against a facility that insists on giving a drug in spite of being warned against it by the spouse? Julianne? I am not normally a litigious individual, but this makes my blood boil. And sometimes the only way to get corporate attention is through the bottom line.

Senior Care??!!!

_________________
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 Jan 15, 2011 8:10 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sitting issue
I would at least send a letter with all the details to the state medical board. After all, a physician had to have ordered these medications. Yes, the hospital would also be responsible. Unfortunately, you would have to prove that damage was done, not just that they gave a contraindicated drug.

_________________
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.


Sat Jan 15, 2011 8:20 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Sitting issue
Misty, 10mg of zyprexa 2xdaily, seems to be a lot. Frank was gradually increases to 15mgs, and after a few months, gradually decreased to 5mg once at bed time. I have no clue what any of it is doing but hope it's right.

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


Sat Jan 15, 2011 8:29 pm
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Re: Sitting issue
Yes, the dementia unit is called Senior Care. Mostly, the people who go there are patients from the local nursing homes who need to have their medications adjusted, etc. It was my last hope at the time. Jerry wasnt given the Haldol in Senior Care, but in the ICU of the hospital. There are a lot of things that I have learned since Jerry has been in our local hospital 5 times in 2010. These are the main 3.
#1. Always take a packed bag, cause they usually are going to keep him.
#2. Always take his home meds. Not to give to the hospital personnell, but so I can give them, if need be. The last time it was after 8:00pm before he was admitted,(5 hours in the ER) and they didnt order any meds until morning. So I gave them myself, and told them that I did.
#3. List all meds that I do not want him to have as 'allergic" meds. He has to have 2 armbands to list it all. But that keeps them from giving something that I dont want him to have.
Each of us has a responsibility to our loved ones to be their advocate. We must be that voice of reason in a world gone mad, especially when we are part of that world. I know that I ramble a lot, but if it helps just one of you reading this, then I feel like I am being useful to our little band of warriors. Keep the faith and keep on, keepin on.


Sat Jan 15, 2011 11:06 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sitting issue
LBD experts suggest Seroquel or Clozaril. Those don't sit well with everyone (but I don't see how you'd know unless they tried) in which case Risperdal or Zyprexa might be given.


Sun Jan 16, 2011 1:18 am
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Re: Sitting issue
Misty,
Before my mom was diagnosed with LBD, she was in the hospital for a cardiac arrest. While there, she was treated for hallucinations and extreme agitation with haldol and risperadol. She has not walked since entering the hospital and her Parkinson's symptoms which we had just started seeing were off the chart. I have to wonder if those meds caused "irreversible Parkinsonism" that she now lives with daily. She is completely bedridden still; although she has regained her ability to swallow and speak.

Even though your husband's motor problems did not start right away after Haldol, is it possible that the med could have caused the parkinsonism that you are seeing now, a few months later. That's one for the medical folks here to weigh in on, but I hope that you get some answers and comfort from knowing that there are people here to support you!
Debbie

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Sun Jan 16, 2011 1:41 am
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