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 New to board---mother in law with LBD 
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Joined: Sun Aug 17, 2008 7:36 pm
Posts: 4
Post New to board---mother in law with LBD
Hi all, my mother in law was diagnosed with LBD over a year and a
half ago but only after visiting many neurologists and doctors. she
had been showing signs of mild (very mild) parkinsons in her hands
and a great deal of having trouble remembering names and retaining
things.

Last year she became more and more aggressive as well as trying to
run away from home. She exhibited many of the same hallucinations
day after day that pertained to children and animals. she would
insist on feeding them. In anycase, when she became violent, we had
her see a psychiatrist who prescribed meds. They worked for about
six months. Her behavior improved but not her memory. Then suddenly
this past April, the hallucinations increased thru out the day as did
the violent behavior and running away. God was she strong. She
could outrun any of us (she is 80 yrs old this year). In June we
had to have her hospitalized as the behavior was totally out of
control. We also noticed that she was walking and running on her
tiptoes. All along she was also having gait problems.

She was in a geriatric psych ward but a really good one where we all
felt should was being well taken care of for a short time and then we
hoped to bring her back home. Unfortunately, the meds, the anti
depressants or the psychotropic meds, seemed not to be working well.
she was no longer aggressive but now she was no longer mobile. She
could not walk without assistance, she was incontinent and rarely
recognized anyone.

After three weeks in the psych ward, she was transferred to the
hospital section as she had a urinary infection. The psych ward felt
they could no longer help her and she was rejected for Occupational
therapy due to her inability to follow directions.

When she was discharged from the hospital, we moved her in with one
of my brother in laws who had room for my mother in law and her
husband. My mother in law (now one month later), is immobile,
unable to communicate other than whimpering, her body is totally
rigid, she is in a wheelchair and her swallowing skills have
deteriorated to the point where she can only be given liquids or
pureed foods. All the current doctors feel that the meds, mostly
the seroquil had damaged her. She was successfully on seroquil
prior to the hospitalization. The hospital took her off all meds for
several days then restarted different meds but with the seroquil.

I am NOT blaming the hospital. They did have to get her behavior
under control. I guess I'm looking for others who's parent or know
of others who have deteriorated so quickly and what I can expect from
here? I think the family and myself included are feeling lost and
helpless that here was this vibrant woman a year ago who is now 100%
an invalid but uncertain whether she understands whats going on even
though she does not acknowledge us. She seems to be in chronic pain
and we just feel for her.
thanks for listening.
pearl


Mon Aug 18, 2008 9:26 am
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Pearl,
Welcome to the LBDA Forums, sounds like it has been a rough year for all involved, the meds that are often used for these behavior issues often cause many problems and yes some of the problems can't be reversed.

LBD is a disease which may present itself with a wide variety of symptoms and accompanying disorders. As each symptom or disorder surfaces, the caregiver and medical professional must address them one at a time making sure the treatment of one symptom does not negatively impact the patient, or cause another symptom to worsen. There is no way to predict which symptoms will present or the degrees of progression with any one LBD patient.

If you are wondering what actually takes their lives. If there are no accompanying diseases such as cancer, heart disease, or diabetes, then we are left with your question which is a good one. Remember, every patient is different and it is possible that none of this will apply to your MIL. Pneumonia, weight loss, falls, surgery, and medications come to the top of the list. As the disease progresses various physical problems may lead to a battles with pneumonia to a point when the family decides (based on their previous discussions with their loved one) not to treat it. A patient may have a dramatic loss of weight that can be caused by depression or perhaps dysphagia (problems with swallowing) due to the affects of LBD on the autonomic system. Weight loss is common and can lead to life-threatening events. A feeding tube is an option and should be discussed in advance to eliminate the distress that the decision can cause loved ones. Not eating is sometimes a way for patients to give up after several years with LBD. Surgeries due to falls or other ailments can have a negative effect due to the impact of anesthesia on many LBD patients. We often hear about how the patient was fine then after surgery there was a progressive decline leading to death. And last it can be medication, the very thing used to try and manage symptoms of the disease can have a negative impact. ause many problems and yes some of the problems can't be reversed.

Sadly as this disease progresses we have to progress in our care for them.

I am glad that you found the forums, there are many here that will offer their support.
Any questions you may have just post in the topic your question pertains to to get the answers and suggestions you hope for.


Mon Aug 18, 2008 11:33 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Pearl,

I think it's called the Emotion - Motion Conundrum because what we do for the psychiatric side of things screws up the motor side of things, and vice versa.

Please read some of the posts here to get a sense of things.

And check out the Boeve "Continuum" paper on the LBDA.org website. It provides a framework for how your mother could be treated pharmacologically.

I think your family has a decision to make -- try to find an MD who will follow Boeve's treatment plan and see if you can get some improvement, or figure that things are very unlikely to improve and try to make your mother's days the best they can be. (These are not mutually exclusive.)

If you decide not to fight (or if you can't find an MD who will fight with you), then I'd recommend you call in hospice now. They can be of great help to your mother and family, especially in dealing with the pain.

BTW, are you thickening liquids that are given to her?

In most cases (but certainly not all), LBDers do well on Seroquel. Perhaps your mother is not one of those cases. Unfortunately, there's no way to know who can handle what meds. So the key is to be very cautious, start with a low dose, increase it slowly, and monitor very closely.

Robin


Mon Aug 18, 2008 10:10 pm
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Joined: Sun Aug 17, 2008 7:36 pm
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Thanks for responding. I made a mistake about the seroquel. it was the haldol that was given to her in large amounts when we took her to the emergency room for treatment of her violent behavior and running away. she slept literally, for two and a half days and when she woke up, she was never the same again. I failed to mention that we recently involved hospice care. We also started thickening the liguids for her as suggested by hospice.
I guess now its just a waiting game?


Mon Aug 18, 2008 10:25 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Sadly, haldol is a big no-no for LBD. Unfortunately, many ERs toss the stuff around like it's gone out of style.

Did your MIL not have an LBD diagnosis prior to going to the ER? How did she get the LBD diagnosis? At the psych hospital?

Yes, it is a waiting game. I highly recommend you read the book "Final Gifts" to prepare you for your MIL's death.

Be sure that the family knows your MIL's final wishes with regard to resuscitation (I'm assuming she's DNR now), feeding tube, and tracheotomy/respirator.

I strongly encourage you to immediately consider brain donation and if that's something the family wants to do, make the arrangements now. (The info obtained through brain donation is of great benefit to blood relatives and research for that particular disorder.)

Try to think what you would want done if you were in the same situation as your MIL. Try to make her final days/weeks as loving as they can be.

Best wishes,
Robin


Mon Aug 18, 2008 10:45 pm
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Joined: Sun Aug 17, 2008 7:36 pm
Posts: 4
Post 
the hospital absolutely knew about the LBD diagnosis. She was diagnosed over a year ago prior to her violent episodes. On top of which, when she became violent, they sent her to the ER first to get medically cleared for the Geriatric psych ward. the psychiatrist from the psych ward was the one who prescribed the haldol. and when it did not inially work, they gave her more. For some reason, almost every doctor she has seen since the hospitalization seem to believe its not LBD. Yet she's following it as though she were a textbook case. Each of the doctors state that LBD is rare. Its obvious they know very little about the disease.
Right now, the hospice doctor and my MIL's neurologist, strongly believe she has LBD.

Yes, my mother in law is definitely dying now, she's unable to do anything and her swallowing skills are deteriorating. its just a matter of how long she'll hang in. unfortunately or fortunately, we cannot donate or allow an autopsy. She is or was very very religious and autopsies are forbidden. I'm very disapointed as I feel it would have been important for her sons.
pearl


Tue Aug 19, 2008 7:31 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Pearl -

Sadly, we have heard many stories here about death at the hands of healthcare professionals who ultimately don't know the basics of LBD.

I hope your MIL's passing is peaceful.

Best wishes,
Robin


Tue Aug 19, 2008 2:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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To others considering brain donation -

re: religious beliefs and brain donation

"While some faiths have very particular laws regarding the circumstances of donation, the mandate to heal and call to compassion are recognized as fundamental to all religions." For more on specific religions, see:
http://www.ladders.org/pages/Brain-Donations.html and scroll down to "Religious Perspectives Concerning Brain Donations."

Many religious families talk to their clergy, rabbi, or religious leaders about post-mortem brain donation. Most (but not all) learn that religious leaders support brain donation because it is a gift that will help others.

Robin


Tue Aug 19, 2008 2:51 pm
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Joined: Sun Aug 17, 2008 7:36 pm
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thank u so much for the info Robyn. I've sent the article to my husbands family. I truly hope they will consider it as I just realized from reading the article that this could affect all the children not just of my mother in law, but mine as well.
pearl


Tue Aug 19, 2008 6:56 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Any blood relative is affected.

Of near-term importance will be your MIL's siblings because they are of the age where they have higher chance of getting a neurodegenerative disease. If your MIL's siblings are subsequently diagnosed with some form of dementia, it would help them to know what disorder she actually had.

Down the road, your husband (and his siblings) will benefit from this knowledge. Later on, your children (assuming they a not adopted) will benefit greatly from this knowledge.


Tue Aug 19, 2008 7:35 pm
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Joined: Sat Mar 22, 2008 9:14 pm
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Pearl, my prayers are with you in this very difficult time. Everything everyone wrote is so true and so to the point... just follow their leads and God be with you. My mom died from extreme weight loss in a very short period of time, hardly ate and she had gotten a bed sore that got worse and worse and just was so far gone that it wasn't healing. She was with Hospice and they were wonderful. Def. look into Hospice. Good luck in this final journey. It'll all be ok. The heartbreak never goes away but somehow, we learn to go on and do all we need to still be doing in our life. I truly understand what you are going through. You're not alone.

Debbie


Wed Aug 20, 2008 12:28 am
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