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 Oh my gosh am I glad I found you guys... 
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Joined: Fri Jul 30, 2010 4:24 am
Posts: 3
Post Oh my gosh am I glad I found you guys...
My father in law will be 83 in November. A little over a year ago his right hand and forearm began trembling. At the end of last summer he starting seeing bugs coming from the air vents in the ceiling at night. He would chase them with anything he could reach the ceiling with. At that point my mother in law took him to the doctor. The doctor didn't want to treat the Parkinson's symptoms at that time, but did put him on a low dose of Seroquel for the "bugs". He took the Seroquel for two months and when the bugs disappeared he quit taking the medication. This May he started seeing children outside during the day and quickly progressed to seeing them and other people in his home at night. He has been back to the Neurologist who put him back on the Seroquel and sent him for multiple aptitude type tests to rule out Alzheimer's. I have never thought that this was Alzheimer's and after my own research, I felt as though LBD was his diagnosis. Earlier this month after a really bad night that he had, my mother in law took him in to the Neuro (just showed up without an apponitment). The doc told her he thought it may be LBD and increased his Seroquel dose. This has done nothing for him and it has been increased again this week. He is now taking 50 mg twice a day. They have not gotten the results of the tests he had done yet. This past Sunday and Monday they came and spent the night with us and he only woke a couple of times. The next night they spent with my sister in law and had another pretty good night. Last night they stayed home and my husband stayed with them...he woke every hour either seeing people or hearing voices. Tonight they wanted to try it alone. At 1:30 AM my father in law walked to our house in his pajamas and barefoot because he was seeing people, pictures moving, cabinets moving and couldn't find my mother in law. They don't live "next door". They live on 5 acres and we live on the next property over on 10 acres. Our homes are about 2 acres apart. He was so upset when he got here and he thought my mother in law was having secret meetings with these people (not the first time he thought she was involved with the people). My husband had to go get her from their home and bring her back to ours. He was accusing her of letting them in and plotting with them. His paranoia is getting pretty bad and he seems to be progressing fast in my opinion. And the Seroquel seems useless. I told my husband that I thought he needed different medication. Physically he is pretty active although he shuffles his gate and has a hunch in his posture (this had developed over the last 6-8 months).

This month has been exhausting. Very little sleep for any of us. My husband and I own a business and I work part time outside of that. We have two twelve year old daughters...I don't know how we are going to manage this. We don't want my husband's step-mother to have to deal with this alone and my husband is an only child (my sister in law is his step-sister). I feel like we need to find a specialist who deals with this type of dementia but I don't know if getting his hallucinations under control is possible. I welcome any advice or feedback anyone can provide. Thanks for listening!


Fri Jul 30, 2010 5:02 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Oh my gosh am I glad I found you guys...
Lisab, Others will chime in that know more, but I'm sure they can get your father-in-law on some meds to, at least, lessen his hallucination. It takes a while to balance the meds. My thoughts are with you and your family, hang in there, it may get better with the right meds.
Take Care,

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


Fri Jul 30, 2010 7:04 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Oh my gosh am I glad I found you guys...
Hi Lisa - I am so sorry for what you are going through. Getting a dr. to understand all his symptoms and getting him on different meds seems like it's extremely critical. Also, your mother in law needs to get some devices so that he can't wander out of the house alone. There are postings on this forum about various aids to keep the patients safe in their homes (special locks with alarms for doors, alarms that can be attached to clothing, etc.)
Stop back here often. It's a great place for support and info. 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 Jul 30, 2010 7:47 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Oh my gosh am I glad I found you guys...
Lisa, welcome to the forum! Your FIL sounds a lot like my husband a couple of years ago. He's no better now but he can't walk as well so he can't 'escape' so easily. He still managed to walk over to the neighbor's house the other day before I caught him. In our state it is illegal to lock a confused person in his room or house [I suppose because of fire?] but alarms or monitors could be used. My husband is unable to get out of bed [except to slide into the floor] by himself so he can't get out at night. I've had to call the paramedics five times in three months to pick him up because he is totally unable to assist in getting him up.

My heart aches for your MIL and for all of you. You might want to look around for dementia care units or other facilities that are secure. Many have long waiting lists so it might be a good idea to plan ahead. Your MIL will be worn out from lack of sleep---just as I am. I survive from day to day, somehow. It's a sad and exhausting existence. God bless you!

_________________
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 Jul 30, 2010 9:58 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Oh my gosh am I glad I found you guys...
Check out Dr. Brad Boeve's 2004 "Continuum" paper for appropriate medical treatment of delusions and hallucinations (called "psychosis" collectively) of LBD. You can find it by doing a search on lbda.org.

Other than Seroquel, is your FIL on any other meds? An AChEI is the place to start.


Fri Jul 30, 2010 12:13 pm
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Joined: Tue Jun 22, 2010 4:17 pm
Posts: 18
Location: Connecticut
Post Re: Oh my gosh am I glad I found you guys...
...such problems to be dealt with! When my husband began to roam...mostly just around the house (where he got lost more than once), but, a few times out the sliding door;once on a snowy night, I decided I must do spmething. I had the doorknob to our bedroom door turned around so that the room could be locked with a key from the inside, and still controlled, if necessary from the outside. I secured the sliding glass door so it could not be opened. Now our bedroom was escape-proof. We have a bathroom inside our bedroom area, which made the locked room self sufficient. I go to bed, in the locked room,also, which I lock at bedtime, and open the door with a hidden key in the morning. At first it was very difficult because my husband repeatedly tried to leave the room. I told him the room was locked at night, and would be unlocked in the morning...that I was there with him. Eventually he accepted this, and, now rarely attempts to leave. I must say that his walking ability has also decreased within this timeframe...over a year. I guess the major key, however, is to find the RIGHT medicine combination. We have had many different ones, and, only recently, hit upon the right ones for him. All the best to your family.
Marcia


Fri Jul 30, 2010 1:50 pm
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Joined: Fri Jul 30, 2010 4:24 am
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Post Re: Oh my gosh am I glad I found you guys...
Thank you ladies for your replies.


Today we took my FIL back to the neuro. I explained that I felt that the Seroquel was not having any effect on his hallucinations or ability to stay asleep for more than an hour at a time. He said that his next line of defense would be Risperdal but that he had not exhausted the possible benefits of the Seroquel yet. He is sending him for a sleep study to rule out apnea and assess his REM sleep pattern. He has changed his med dosing from 50 mg twice a day to 100 mg at night. He feels that if he can sleep at night that will help with the psycosis. I am skeptical. I feel like his needs to treat the hallucinaions head on and use a sleep aid.

My MIL called a short while ago because he was refusing the med as he felt that he would miss the people that come in at night. He was pacing the floor waitingon them to get there. My husband has gone to get him to take the med. I can't imagine how frightening it must be for him the minute the sun goes down. I'm praying for. A restful night.


Sat Jul 31, 2010 12:59 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Oh my gosh am I glad I found you guys...
I would caution against Risperdal! It's very dangerous in LBD. My husband nearly died from NMS after using it.

_________________
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 Jul 31, 2010 10:34 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Oh my gosh am I glad I found you guys...
Risperdal can work in those for whom Seroquel doesn't work. We've seen plenty of anecdotal evidence here that this is the case.

Seems perfectly reasonable to get a sleep study and to increase the dosing of Seroquel. Many in our local group are on 200+mg per day.


Sat Jul 31, 2010 11:43 am
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Joined: Fri Jul 30, 2010 4:24 am
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Post Re: Oh my gosh am I glad I found you guys...
Well...we had two good nights of full sleep. My FIL has convinced himself that if he sleeps he will miss "them" coming. Before bedtime last night he told my MIL that she was letting them in and that she needed to leave and go to her daughter's house. My husband reassured him that she was not letting anyone in. He awoke at 3:30 this morning hearing voices. My husband worked until 1:00 AM then had to go and sit with him at 3:30. It seems like he is fighting against the Seroquel...the 100mg dose is double what he was taking just 3 days ago. I don't understand [b]how[b]he can be waking up at night. The sleep deprivation is taking it's toll on my husband. We are making sure that FIL isn't napping during the day and he is great during daylight hours. I know he dreads the night time as we are beginning to as well. I never dreamed that this is what my FIL would have to go through towards the end of his life...seems very unfair. :x

Also, I have tried a search for Dr. Boeve's Continuum. I can't find it. I did find a article dated Jan 2006. Can someone send me a link to it? I have been reading over some of the information on different meds and it is overwhelming (and I work in medicine).


Tue Aug 03, 2010 10:32 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Oh my gosh am I glad I found you guys...
Just in case you haven't tried this, what about having him sleep with the lights on? Would that make him less anxious at night, if he could see? Have you tried either music or a white noise machine? How about massage when he first gets in bed? 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.


Tue Aug 03, 2010 11:42 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Oh my gosh am I glad I found you guys...
Welcome!
If you go to the "Welcome to our forums" sub- forum scroll down to "Frequently Referenced Resources on LBD", you should find what you are looking for there!
Good Luck!

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Irene Selak


Tue Aug 03, 2010 1:36 pm
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: Oh my gosh am I glad I found you guys...
I second that. I am glad I found you guys too. I have done lots of reading on this website and the blog but this is my first post. There are times when I think I am imagining my father's symptoms as he swings in and out of them so often but I realize that this is commom.
My father was diagnosed a year ago although thinking back the symptoms started probably two or more years ago. He was not living near me at the time so it went unoticed until the first big symptoms started. At the time of his diagnosis i was going through a divorce and had just bought a house for me and my two children. Suddenly I had a parent to take in and take care of. I rennovated the basement for his living area outfitted with all the safety equipment. At this point he was still very mobile and i thought we would have a few years together. Since April he has been on a rapid decline and two weeks ago his Dr. checked him in to the hospital to make sure there was no underlying problem causing the rapid change. He is home again now and I have PSW's in every day for 8 hours while i go to work. The rest of the shifts are mine. "we" do not sleep and I am tired. On a waiting list for long term care and i am feeling guilty about that but i know it has to be done. I cannot manage Dad, two kids, a house and a job by myself. I have no other family to help.
The long and short of it is that reading this blog has helped me through many a hard day - thank you!

_________________
Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Tue Aug 03, 2010 8:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Oh my gosh am I glad I found you guys...
Welcome, and I hope you get over feeling guilty. You are doing all you can do, and even managing a home with 2 parents and 2 kids and a job is a lot, let alone being a single parent and caring for another LO with LBD. You need to do what is best for everyone, and at some point, probably way sooner than you thought, placing your parent in an ALF or SNF may be what you have to do. Just don't beat yourself up over it. None of us want our LOs there but often it's the only reasonable choice, or at least the lesser of the evils! I hope you find lots of support here. 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.


Tue Aug 03, 2010 8:50 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Oh my gosh am I glad I found you guys...
Bwana, The hardest is not getting enough sleep. Enough? Any, some nights. You are a brave person to take on all of this. I think all of us are quiet, unrewarded and quite heroic. If I could just deal with the nighttime stuff, I could manage the daytime stuff.

Nan


Tue Aug 03, 2010 8:52 pm
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