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 Recently LBD diagnosis for my mom - trying to help her 
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Recently LBD diagnosis for my mom - trying to help her
Hello -

My name is Liz. My mother came to live with me about two years ago. Before coming to us, my mother was living with her second husband who was indifferent and neglectful at best, perhaps even abusive and mean (she did divorce him - so that has been one less worry). She has had a Parkinson's diagnosis for over ten years now. When she came to us, she was having lots of problems. At first we thought she was simply having problems with being in denial about her Parkinson's and had become addicted to benzodiazepines. With the help of a psychiatrist, three hospitalizations, and a lot of all night hand holding - we got her off of those awful drugs only to find that her anxiety was still out of control. Eventually we found that she was having hallucinations and she became very difficult to deal with. She is very preoccupied with herself and she is constantly yelling for help. She has constant anxiety - I think over the fact that she is very much aware of her cognitive losses. Since I have two small children, I have not been able to continue with her in the home - so I have had to put her in assisted living. She did not work out with the first three places that she was placed, however. The third place actually requested that she leave. She is not violent, but her behavior is panicked and she demands constant attention. It is an average day for her to ring the bell 45 times for assistance (they keep track on a computer and show myself or my sister when we are there - so this seems to actually be true). We have found that assisted living does not like having patients that cause them a lot of work/trouble. Anyway - recently I called the help line at the local hospital and spoke with someone who said that she thought my mother sounded like she had dementia with Lewy Bodies. She set us up with someone who specializes in dementia. We saw the doctor for the first time last week. She said that my mother's symptoms are pretty classic Lewy Body. She suggested that we get on this list. We are certainly in need of advice. It is likely that my mother will be asked to leave the assisted living place that she is currently living in, but she doesn't seem at all bad enough for a nursing home. There are days when she has pain and anxiety and can't cope at all. There are other days in which her mind and her body seem to be working as well as any other 70 year old. We have no idea where to place her if/when she is asked to leave her current placement. We are hoping that by being able to chat with folks in a community, we will get good advice on this issue, and on many others. Thanks - Liz


Thu Sep 01, 2011 11:27 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Recently LBD diagnosis for my mom - trying to help her
Hi Liz,
Welcome to the forum - you have certainly come to the right place for good advice, links to lots of information, and kind and supportive messages. My mother (just turned 95 this week) was diagnosed in April, and we are coping but with difficulty. She is fairly early - probably would not have been diagnosed so quickly except that I'm in the dementia world professionally and took her to someone really outstanding. Even so, it has been a challenge, especially for my dad, who is 95. One book that has helped him, and the rest of the family, is "A caregiver's guide to Lewy body dementia" by James and Helen Whitworth.

I hope you now have a first-rate neurologist specializing in LBD to help manage the clinical side. And whatever situation comes up, someone here seems to have experienced it and to have wise advice (even if it is just a gentle sigh and a pat on the shoulder.)

Good luck, and hope your mom settles down enough to stay where she is,
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Sep 02, 2011 12:26 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Recently LBD diagnosis for my mom - trying to help her
Welcome to the forum! Hope you will find information and support here. Placement is very difficult with LBD. Some dementia care facilities work well and some do not. Those that are more like ALFs often will not provide the extra attention the residents clearly require. Hoping you get some assistance in this issue before your mother gets asked to leave her current facility. We care! Hugs and God bless!

_________________
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.


Fri Sep 02, 2011 12:58 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Recently LBD diagnosis for my mom - trying to help her
Welcome!

I hope that new doctor you've found is starting your mother on a medication. There are several that may help various symptoms, but it is a good idea to start with one symptom at a time.

Our doctor asked which symptom bothered us most, and started with that. From your description I think I would choose anxiety!

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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


Fri Sep 02, 2011 2:49 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Recently LBD diagnosis for my mom - trying to help her
Hi - so sorry for your need to be here but hope you find the support and info. you'll need. When my dad first moved to the ALF he, too, was either yelling for help (when he didn't actually need it most of the time) or when he was still able to call, he'd use the house phone and his cell phone to constantly call for help. Mainly he just wanted someone in his room all the time. Obviously, the CGs there could not be in his room all the time, and when they didn't come he'd call me or his friends constantly. Then he'd tell me "this place isn't all that they advertised. You don't get good service around here." It was very tough on all of us.
Arm yourself with info. that will help guide you with decisions you'll need to make, questions you'll need to ask, and come here often for support. There's a lot of info. in these postings so you may want to search on certain terms like "anxiety" or "depression" and read those first, if those are the biggest issues.
Good luck, 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.


Fri Sep 02, 2011 9:04 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Recently LBD diagnosis for my mom - trying to help her
Liz,
Welcome to the LBDA forums and I hope it comes to be a place of information and comfort for you, I am hoping that once your Mom is seen and hopefully with a LBD savvy Doctor that perhaps he/she could get her on the correct combo of drugs to help with some of her behaviors, I welcome you to seach older posts , often if you put in a subject in the search it will bring up many things written. Wer try to keep questions and comments in their closest area in the hopes that more eyes will be looking !

Again welcome !

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Irene Selak


Fri Sep 02, 2011 4:26 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Recently LBD diagnosis for my mom - trying to help her
Thank you everyone for the warm welcome and useful advice. It is definitely stressful to be responsible for someone's care and to try to figure out ways to alleviate (as much as possible) a person's suffering (both emotional and physical). It is very nice to know that all of you are here. I really am a novice to all of this (I had just gotten the pediatrician figured out). I was wondering - what the abbreviations for some of the nursing home facilities that some of you were using stand for. I am really in need of finding a facility for my mother that is more than Assisted Living, but less than a Nursing Home in the central or southern Indiana area. I am not sure what I am looking for. I know that the abbreviations stand for certain types of facilities, but I am not sure exactly what they mean.

Thanks - Liz


Mon Sep 05, 2011 2:48 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Recently LBD diagnosis for my mom - trying to help her
SNF = Skilled Nursing Facility, aka Nursing Home, I believe. I don't know of any type of facility that is between an ALF (asst'd living facility) and a SNF. I think you need to check out various facilities and see what services they offer and at what prices. In our case, the ALF provided care for people anywhere from NO care needed, to full nursing care including a 2-3 person assist. Places can vary a lot in what they will provide. As the person's needs increase, so do the prices generally. Also, some places are very good at dealing with dementia patients, others are not, and there is everything in between.

I'd suggest that you set up interviews & visit a few places. Ask the important questions that need to be asked, especially in the context of your LOs current cognitive state and physical abilities. You'll need to find the best fit you can, knowing that probably nowhere will be perfect. Just try to find the best fit available at a price your LO can afford. Lynn

_________________
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.


Mon Sep 05, 2011 4:05 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Recently LBD diagnosis for my mom - trying to help her
Liz, my loved one (LO) has lived in two assisted living facilities (ALFs) that distinguish themselves from most ALFs with a byline after their name that mentions memory or dementia care. For example, "Highline Assisted Living, Specializing in Memory Care" or, "Orchard Place, a Dementia Care Home". Both of the facilities she has lived in have two locked buildings attached by a hallway; one for people with early dementia who need help with some activites of daily living (ADL's) like meals, showers, etc., and the other section for people with severe dementia. At these two facilities, the people with severe dementia generally need help with all ADLs. People often move from one to the other as their dementia progresses.

One topic that comes up often at my support group is whether a facility keeps outside access locked. Often I hear, "I didn't think she would go out the unlocked door, but there she was walking down the street". Other things that I have looked for are whether there are any stairs or elevators that are no-nos for my LO, and whether the doors to rooms are typically open or locked. In our State (WA) doors have to be heavy metal fire-doors. If a fire door on my LO's room is closed she is not physically or (usually) congitively able to open the door. The best solution I've seen is doors held open by an electromagnet. When there is a fire (and there has been a fire) the fire alarm triggers a break in electricity that closes all the doors. Yes, it is noisier to have the doors open most of the time. But the caregivers (CGs) can look in when they do their rounds and she is more social with the door open.

Good luck in your search. Local support groups can be a great help. We name names in mine. Annie

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


Tue Sep 06, 2011 11:12 am
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