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 Mother With LBD Who Is Rapidly Declining 
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Joined: Thu Aug 05, 2010 11:20 pm
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Post Mother With LBD Who Is Rapidly Declining
My mother is 70 years old and was diagnosed with LBD about 2 months ago. She is an incredible person and watching her go through this is just awful. I am trying to figure out whether anybody else has had a similar experience -- my Mom's disease appears to be progressing much faster than most.

About a year ago, I started to notice that she was forgetting things and having trouble with normal everyday things... sending cards to my daughter without signing them, lost her debit card, had a fender bender in a Target parking lot. She also seemed very depressed and began to lose a lot of weight. However, since February of this year, her symptoms have progressed very rapidly. She became more and more confused, lost more weight and started having digestive problems. I brought her to my house in March and we went through a series of medical tests to try and figure out what was happening to her. Given the dramatic weight loss and stomach issues, we thought she might have colon cancer (which runs in her family), but that wasn't it. In the middle of March she had a stroke and was admitted to the hospital. Since that time, we moved her back into her home and she was doing suprisingly well when she first got out of the hospital. However, since mid-April, things have gotten so much worse. Within weeks of coming home, she became completey incontinent, she can no longer feed or dress or herself, she is having a very hard time speaking in complete sentences, she cannot walk on her own and has suffered hallucinations (which have gotten better since her doctor prescribed Aricept). She is now under hospice care. Given how quickly things have progressed, I am trying to figure out what comes next... I have read that the average life expectancy is 7 years, but given how quickly things are progressing for my Mom, I just can't imagine that she will make it that long. Obviously, she was placed under hospice care by her doctor because they think she has less than 6 months to live, but my question is this: Is there anybody out there who has experienced something similar in terms of the extremely fast progression of the disease? Also, can anyone give me a sense of what we can expect next? I am so fearful that the time is near where she will no longer know who her kids or grandkids are... is that the next step? I would love to hear from anybody who may have experienced something similar or who has any insights to share. My thoughts are with all of you out there who love someone who has been affected by this disease. Thanks.


Fri Aug 06, 2010 12:08 am
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Location: SF Bay Area (Northern CA)
Post Re: Mother With LBD Who Is Rapidly Declining
Sally22,

Sorry to hear about your mother.

Usually when we hear about "rapid progression," a few things come to mind:
(a) medication was administered that the person has had a bad reaction to...and it may be irreversible;
(b) infection, such as pneumonia, bed sore, infection in the mouth;
(c) a different disorder than LBD...a disorder like CJD (Creutzfelt-Jacob Disease);
(d) some other medical problem having nothing to do with LBD....such as cancer.

Could any be possibilities with your mother? Is the LBD a neurologist or psychiatrist experienced with LBD? Have you discussed the "rapid progression" with him? It may be that the "rapid progression" is explained by the stroke.

The "rapid progression" question comes up often on the Forum. You might do a search of past posts containing the words "rapid progression" or "fast decline." You can compare your stories with those others and see if you think it's fast.

Going how far back has your mother had LBD symptoms? As you read over the diagnostic criteria on lbda.org, do you agree with the diagnosis?

Unfortunately it's not possible to confirm the LBD diagnosis while someone is alive. Have you thought about making arrangements for brain donation for your mother? This has been discussed a lot in the LBD Research area of the Forum.

Are your mother's final wishes in terms of aggressive treatment of UTIs and pneumonia, CPR, feeding tube, tracheotomy, intubation, being attached to a respirator, etc clear?

Robin


Fri Aug 06, 2010 12:39 am
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Post Re: Mother With LBD Who Is Rapidly Declining
Sally,
I too am sorry to hear of your Mother's condition, I don't want to repeat suggestions already made so I will just welcome you and I hope you can find your answers here!

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Irene Selak


Fri Aug 06, 2010 8:24 am
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Post Re: Mother With LBD Who Is Rapidly Declining
Welcome! Reading your post I was struck by the fact that your mother had a stroke. Could it be that she has had a number of small strokes, called TIAs [transient ischemic attacks]? This might account for the rather sudden development of her condition. Of course, her neurologist should be able to determine this but it would be very important that she be put on the proper medications to prevent further attacks.

_________________
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 Aug 06, 2010 9:33 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Mother With LBD Who Is Rapidly Declining
Welcome, Sally. Although my dad's "real" diagnosis will never be determined, at one point last year we thought he had LBD, still not sure, but he had a rapid decline much like your mom. Overnight became immobile, totally incontinent, etc. The drs. told us last July he wouldn't make it through the end of the summer. He we are 13 months later and he is still "alive" but has lost the ability to do EVERYTHING except shake his fists in anger (almost all the time) and try to talk, which is getting more difficult all the time.
You should read through the Intros. if you haven't already, and you'll see many of us whose LOs have had rapid declines.
Also, feel free to send me or anyone a PM (private message) if you want to discuss anything privately with a forum member. And, the chat is helpful if you can find anyone there. It is really random when people are on, but it's a good way to get support, vent, share info., etc. as well as this forum. 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 Aug 06, 2010 4:00 pm
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Joined: Mon Nov 23, 2009 12:01 am
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Location: Wake Forest
Post Re: Mother With LBD Who Is Rapidly Declining
Hi Sally,

I am very sorry you are going through all of this. It sounds like there is a lot of things going on with your Mom and you are in the mix of lots of "opinions" from doctors that while they may mean well, don't always have all the answers either. Robin is "spot on" for the things to look for first, and thats where I would start. Also finding a neurologist who knows about the disease is important too if possible. There are many people here who may be able to help. My mother did have many rapid declines over the past 7 years, and she often bounced back while never to her former self, she did bounce to a level of functioning no one expected. If the proper diagnosis is LBD, that can be the course of the disease, which is both difficult (for the caregiver) and a blessing (because you have more wonderful moments together). Also my mother's declines always seemed to be seasonal, I have never looked into this very much but there was a definite seasonal fluctuation to the major declines (the summer has always been a decline period). I wish you the best, and pm me if you need anything or if I can help in any way.

Warmest regards,
Nancy

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All I am, or can be, I owe to my angel mother. --Abraham Lincoln


Fri Aug 06, 2010 4:50 pm
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Post Re: Mother With LBD Who Is Rapidly Declining
Sally, My LO too had the rapid decline, age 70, although looking back there were little things that may have been sending out little warning signals. I agree, you must find a knowledgeable neurologist that knows about LBD. I found one, not the first neurologist but the second one we went to. My LO was put on Aricpet and Namenda and seroquel. It was hard getting him adjusted to the Namenda as I think there were moments of more agitation. I would slow it back to a lesser dose for a while and eventually was able to get him on the prescribed dose. At this time he is so stable. To me it almost seems like he is in a remission, (if there is such a thing) I know he's not but at least I have figured out how to have a peaceful day and night. We can't have a lot of activity at one time around him. The kids all know this now and drop in for short visits instead of the long family dinners we used to have. At least now the hallucinations have stopped. I cherish each day like this I have and wait for the next downward cycle. I have read that of all the dementias, LBD has the most possibility of stablizing of all the dementias. Hope thats where we are at and can live out the rest of our days together like this.
Mary


Mon Aug 09, 2010 12:46 pm
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Post Re: Mother With LBD Who Is Rapidly Declining
Mary -
Congrats and good job!
Robin


Mon Aug 09, 2010 2:28 pm
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Post Re: Mother With LBD Who Is Rapidly Declining
Dear Mary:

What wonderful news. I am so glad you are having some better days.

Joy


Mon Aug 09, 2010 2:34 pm
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Post Re: Mother With LBD Who Is Rapidly Declining
Mary,
This all sounds wonderful and that you are also getting some peace with all of this!

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Irene Selak


Mon Aug 09, 2010 3:27 pm
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Post Re: Mother With LBD Who Is Rapidly Declining
Hi,
So sorry you are going through this with your mom. Your story mirrors mine. My mom was just diagnosed with LBD this week. She's only 65 yrs old. She was originally diagnosed with alz last spring. Her MRI showed that her brain was having mini-strokes and global atrophy. Over the past 2 months, her changes have been unbelievable. She started having dillusions about conversations that never took place and people appearing out of nowhere, she swears that the neighbor across the street stares at her through out the day, she takes her purse with her every time she moves from one room to the other...it's crazy!

I've got a question for you....how much about this disease did you tell your mom?

- Corey


Fri Aug 20, 2010 4:18 pm
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Location: Vermont
Post Re: Mother With LBD Who Is Rapidly Declining
Corey - I never mentioned "dementia" to my dad until a month or so ago when he asked me point blank "do I have dementia?" and I said "yes, and that's why I'm working hard with the drs. to see if we can help some of your symptoms get better." I didn't want to lie to him but I didn't want him to get even more depressed, so that was the best I could come up with.
There is discussion about this elsewhere in the postings, and you can do a search to find those discussions. Seems like most of us have tried to avoid the "d" word. 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.


Fri Aug 20, 2010 8:36 pm
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Joined: Sun Sep 05, 2010 4:46 pm
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Post Re: Mother With LBD Who Is Rapidly Declining
I am confused. But the last couple of days my Mom seems to be alert or should I say trying to be more talkative or witty. She still has awful digestive,bowel,nausea & not eating much. But if U call 4 bites eating vs not eating but some toast & a bottle of Ensure (but not all at one time). She has improved for the evening meal. Tonight was mashed potatoes,green beans,corn & meatloaf. A few bites of each. Of course a couple of hours of complaining of sick stomach. Trips to the BR.
Is this disease going to be up & down? She looks so bad & frail & now weighs 128 losing 40 lbs. As it gets closer to moving her to ALF I just can't imagine her alone in her room with all these problems.
Yep guilt trip arrived again.
gayle


Fri Oct 15, 2010 10:02 pm
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Post Re: Mother With LBD Who Is Rapidly Declining
Gayle, I can't remember--is your mother on any of the dementia meds like Aricept or Exelon? Sometimes they can cause severe nausea and weight loss.

_________________
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 Oct 16, 2010 12:21 am
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Location: SF Bay Area (Northern CA)
Post Re: Mother With LBD Who Is Rapidly Declining
Gayle,
Could your mother have gastroparesis? Have you gotten a GI consult?
Robin


Sat Oct 16, 2010 1:25 am
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