Guest guest Posted September 2, 2007 Report Share Posted September 2, 2007 mabesser, I am sorry to hear about your Dad. It does sound like a lot of not such good meds. Wish the MDs knew what they were doing before they just start them on all those meds. Not sure what your next move is and it sounds like you need to find a good nh with a dementia unit. Where are you located? If you go to the bottom of this email, you will find all kinds of links for meds, nhs, and what might help and what might not. You can also click on " Messages " and go in and do a search of any that might be of interest. Just put a topic in the search and you will probably get more messages than you can read. There is also another site where you might find some info. www.lbda.org You should be able to click on that in this message. Hope this helps. What made you think your Dad has LBD? Doesn't sound like he has a dx yet. Have you tried a Univ hospital? Just some quick thoughts when you have to much to think about already. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. My beautiful father .....is so sick. He has dementia (we suspect LBD). He's fallen and hit his head, 5 stitches and two weeks in hospital. Heart murmur may have caused the fall (but so might LBD). Too many medications (including Avitan). Too many side effects. Too many mistakes by doctors and nurses. Went to a long-term care facility on Friday. Troublesome nights. More medications (risperdol). More delusions. Now, in the middle of the night, the nursing home says he's not safe there, and have asked us to move him like some sort of pariah. At midnight to an ER. Not sure where to next. Please pray for us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2007 Report Share Posted September 3, 2007 Oh, my..... you and your Dad are most definitely in my prayers this morning (((((((((((((HUG))))))))))) Gladys -- My beautiful father .....is so sick. He has dementia (we suspect LBD). He's fallen and hit his head, 5 stitches and two weeks in hospital. Heart murmur may have caused the fall (but so might LBD). Too many medications (including Avitan). Too many side effects. Too many mistakes by doctors and nurses. Went to a long-term care facility on Friday. Troublesome nights. More medications (risperdol). More delusions. Now, in the middle of the night, the nursing home says he's not safe there, and have asked us to move him like some sort of pariah. At midnight to an ER. Not sure where to next. Please pray for us. Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2007 Report Share Posted September 3, 2007 mabesser -- I'm sorry your dad is having so many difficulties. Where are you located? First he needs a diagnosis. Then you need to find a doctor who is willing to work with him -- you could get a referral from his PCP to see a memory disorder OR movement disorder specialist. Then you should have this doctor receive a copy of Dr. Boeve's document: http://www.lewybodydementia.org/Boevelink.php And if you go into our links section: http://health.groups.yahoo.com/group/LBDcaregivers/links Go into the folder marked: Nursing Home / Assisted Living / Long Term Care Search A list of sites that may help in one of your most difficult decisions. I've found that not-for-profit NHs are best... We have a few NHs listed in our Long Term Care Facility database here: http://health.groups.yahoo.com/group/LBDcaregivers/database w/in: Living Arrangement Referral Nursing Homes, Assisted Living Facility, etc. And this is the LBD brochure to provide to caregivers of your dad: http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf Hope the above info helps - but please let us know where you are - maybe one of us is in your area and can help with info... > > ....is so sick. > > He has dementia (we suspect LBD). > He's fallen and hit his head, 5 stitches and two weeks in hospital. > Heart murmur may have caused the fall (but so might LBD). > Too many medications (including Avitan). Too many side effects. > Too many mistakes by doctors and nurses. > Went to a long-term care facility on Friday. > Troublesome nights. More medications (risperdol). More delusions. > Now, in the middle of the night, the nursing home says he's not safe > there, and have asked us to move him like some sort of pariah. At > midnight to an ER. Not sure where to next. > Please pray for us. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 Hello everyone - My dad is still in the hospital and doing somewhat better. Wednesday was the worst. No facilities in MN or WI with 1:1 NH beds (in memory unit) available. None. The only option available: have my dad put in protective custody (read: arrest) because he is a danger to himself and others. Then the county policy department could look at their available options for help. The only place they could find was a mental hospital four hours away. AND EVEN THEY TURNED HIM DOWN (reason stated: he was not medically stable because his hemoglobin levels were low). Thursday better, with hopes of an eval. facility (again, about four hours away) MIGHT take him if his insurance pans out (it's across state lines). We also found a private NH (Comforts of Home) in town that, it seems, will take him for now (until he's evaluated and stabilized on meds so he can move to his next NH/home. More to come, I'm sure, but I thought you'd like to know. *********************** He has dementia (we suspect LBD). He's fallen and hit his head, 5 stitches and two weeks in hospital. Heart murmur may have caused the fall (but so might LBD). Too many medications (including Avitan). Too many side effects. Too many mistakes by doctors and nurses. Went to a long-term care facility on Friday. Troublesome nights. More medications (risperdol). More delusions. Now, in the middle of the night, the nursing home says he's not safe there, and have asked us to move him like some sort of pariah. At midnight to an ER. Not sure where to next. Please pray for us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 I had started down this path, and (get this!) it appears that the hosp. that's been so helpful has already contacted the ombudsman! Could it be that the hospital is filing a complaint? Is that possible? Dad is on his way to a facility to help evaluate, diagnose and help determine a medication plan for him! It's the first ray of hope we've had in a long, long time! -- In LBDcaregivers , " gaat " wrote: > > Wow, this is nuts!!!!!!!!! Is there an senior ombudsman or someone that can advocate on your dad's behalf??????? > Courage > > Re: My beautiful father > > > Hello everyone - > > My dad is still in the hospital and doing somewhat better. Wednesday > was the worst. No facilities in MN or WI with 1:1 NH beds (in memory > unit) available. None. The only option available: have my dad put in > protective custody (read: arrest) because he is a danger to himself > and others. Then the county policy department could look at their > available options for help. The only place they could find was a > mental hospital four hours away. AND EVEN THEY TURNED HIM DOWN > (reason stated: he was not medically stable because his hemoglobin > levels were low). > > Thursday better, with hopes of an eval. facility (again, about four > hours away) MIGHT take him if his insurance pans out (it's across > state lines). We also found a private NH (Comforts of Home) in town > that, it seems, will take him for now (until he's evaluated and > stabilized on meds so he can move to his next NH/home. > > More to come, I'm sure, but I thought you'd like to know. > > *********************** > > He has dementia (we suspect LBD). > He's fallen and hit his head, 5 stitches and two weeks in hospital. > Heart murmur may have caused the fall (but so might LBD). > Too many medications (including Avitan). Too many side effects. > Too many mistakes by doctors and nurses. > Went to a long-term care facility on Friday. > Troublesome nights. More medications (risperdol). More delusions. > Now, in the middle of the night, the nursing home says he's not safe > there, and have asked us to move him like some sort of pariah. At > midnight to an ER. Not sure where to next. > Please pray for us. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2007 Report Share Posted September 8, 2007 9-8-07 TO: Re: My beautiful father To caregiver, I'm new to this group. I'm a social worker and was taken aback by your post. Have you in the past had any luck with social workers- who specialize in " geriatric social work " or LBD Support Groups with Resources in of near your residence? I'd would like to help if I can. I am in Florida. I am new to knowing about LBD and am trying to get up to speed so that I can be a resource in my area and here. I know you have likely been down this road before, but it sounds like there are people thinking about you (in this support group for one). I would like to extend this invitation to others reading. I have already met with a wonderful person and resource out of Pensacola, FL. I will be attending her support group next week. It's an exciting start... I consider to by in awe of people such as yourself... Continued good luck and hang in there!!! Respectfully, Phoenix_cats -- In LBDcaregivers , " mabesser " wrote: > > I had started down this path, and (get this!) it appears that the > hosp. that's been so helpful has already contacted the ombudsman! > Could it be that the hospital is filing a complaint? Is that > possible? > > Dad is on his way to a facility to help evaluate, diagnose and help > determine a medication plan for him! It's the first ray of hope > we've had in a long, long time! > > -- In LBDcaregivers , " gaat " <gaat@> wrote: > > > > Wow, this is nuts!!!!!!!!! Is there an senior ombudsman or > someone that can advocate on your dad's behalf??????? > > Courage > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2007 Report Share Posted September 8, 2007 My mother has medical power of attorney for my dad, and she's up with him (as is my oldest brother). She is a strong advocate for him, but this is all so new to all of us. Before his fall, he was living at home and extremely high functioning. I am in the process of writing down the saga of all of this, complete with names, dates, and numbers. I can't tell you how much I appreciate all of the advice, ideas and support from this group. I don't know any of you, but I feel like we share something that makes us, somehow, closer. My thoughts and prayers go out to all of you. -- MAB > > > > Wow, this is nuts!!!!!!!!! Is there an senior ombudsman or > someone that can advocate on your dad's behalf??????? > > Courage > > > > Re: My beautiful father > > > > > > Hello everyone - > > > > My dad is still in the hospital and doing somewhat better. > Wednesday > > was the worst. No facilities in MN or WI with 1:1 NH beds (in > memory > > unit) available. None. The only option available: have my dad > put in > > protective custody (read: arrest) because he is a danger to > himself > > and others. Then the county policy department could look at > their > > available options for help. The only place they could find was a > > mental hospital four hours away. AND EVEN THEY TURNED HIM DOWN > > (reason stated: he was not medically stable because his > hemoglobin > > levels were low). > > > > Thursday better, with hopes of an eval. facility (again, about > four > > hours away) MIGHT take him if his insurance pans out (it's > across > > state lines). We also found a private NH (Comforts of Home) in > town > > that, it seems, will take him for now (until he's evaluated and > > stabilized on meds so he can move to his next NH/home. > > > > More to come, I'm sure, but I thought you'd like to know. > > > > *********************** > > > > He has dementia (we suspect LBD). > > He's fallen and hit his head, 5 stitches and two weeks in > hospital. > > Heart murmur may have caused the fall (but so might LBD). > > Too many medications (including Avitan). Too many side effects. > > Too many mistakes by doctors and nurses. > > Went to a long-term care facility on Friday. > > Troublesome nights. More medications (risperdol). More delusions. > > Now, in the middle of the night, the nursing home says he's not > safe > > there, and have asked us to move him like some sort of pariah. > At > > midnight to an ER. Not sure where to next. > > Please pray for us. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 Condolences, and I know what you mean about the wrong meds or too much of them at the medical facilities. I'm glad you found a place that was the Comforts of Home, as there aren't many. --- mabesser wrote: > I know it's been a while since I posted anything > about my dad. He fell > in August, then someone jumped on the accelerator on > the Lewy Body Bus. > Bad drugs in a trauma hospital. Mistakes compounded > by major ethical > errors at a nursing home. More bad drugs in a > so-called rehab facility > (they had him on 300mg of Seroquel a day!!). Then a > ray of wonderful > light at a place called Comforts of Home. Then a > number of falls. > > And then his passing. My beautiful father passed > away on Nov. 21. A > blessing for him, really, as he was terribly > agitated and failing. > > It is so hard to think of the " what ifs. " What if we > had gotten him to > a facility that wouldn't have medicated him to > within an inch of his > life. What if. What if. What if. > > I thank my lucky stars for a strong family. I thank > my lucky stars for > Comforts of Home. I thank my lucky stars for this > group. And I thank my > lucky stars for my dad. > > I don't know that I could have gotten through this > without you. > > > June Wife of Darrell, dx'd Alzheimer's in 1999, Aricept started, added Celexa 2003 for depression; probable dx of LBD 2006; died at age 75 in November 2006. Autopsy confirmed LBD and AD. ________________________________________________________________________________\ ____ Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how. http://overview.mail.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
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