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 My husband was just diagnosed DLB and sleeps constantly 
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Joined: Sun Aug 30, 2009 4:46 pm
Posts: 10
Location: New Iberia, Louisiana
Post My husband was just diagnosed DLB and sleeps constantly
I am new to this website and forum. I have been reading the forum because my husband situation has changed drastically recently so I am in the process of trying to re-educate myself. I can relate to much that is written and a lot of the posts do not apply to his situation. The post from BevSmith about her Dad sleeping so much and the replies have gotten my attention and quite frankly has scared me to the point of making me shake.

My husband is 66 years old and was diagnosed with "probable alzheimer's disease in 1999. He was diagnosed very early because I was the director of a retirement community and knew immediately that something was wrong. Long story short, he went on long term disability and we have been dealing with Alzheimer's disease since. He was put on 10mg Aricept and 1 mg of Clonazepam for horrible active nightmares since 1999. He exihibited some symptoms of parkinson's disease about 2 years into the journey but they were very mild.

Last year he started seizures and we tried the usual parkinson medications. I questioned the Neurologist extensively about the possibility of Dementia with Lewy Bodies. The Neurologist knew nothing about the disease. He got worse and I discontinued the medication on my own. About the same time, he got cirrhosis of the liver from Niaspan for high cholestrol (which he didn't have). They stopped all medications except Aricept and Clonazepam. At one point they gave him 6 months to live and sent us home with Hospice Care. I nursed him back to health and we moved to Louisiana to be closer to family. The doctors cannot believe he has made a full recovery from the liver disease and we keep it under control with medication. However, for the past 3 months, he has been on a downward spiral with his Alzheimer's disease. We found a new doctor here and he insisted that I take him to a neurologist. Bob was then stiff, leaning, and sleeping a lot; but nothing that I couldn't deal with. We were still walking about a mile a day. He was doing most everything for himself with very little assistance. I visited the new Neurologist last week......we made a grand entrance into his office with my dear husband having a bowel movement (with pampers on) all over himself and their bathroom. We had to clean up there then make a beeline for home. The office people and doctor were so gracious, helpful, and took it all in stride. They allowed me to go home, clean up and then come back to the office and keep the appointment. The doctor was wonderful and spent about an hour with us. His diagnosis: Dementia with Lewy Bodies. He put him on Risperdal. 2 days later (Friday) he took him off and told me to call him to let him know how he responded to getting off the Risperdal. He is still suffering from delirium and agitation but not as much as with the Risperdal.

About 2 months ago, the decline started in earnest. It is going very rapidly. He is now urine incontinent with some bowel accidents. He sleeps 16 to 18 hours a day. We have put him in a hospital bed, has a special potty chair over the commode, falls into bed and chair like a tree. His legs, hips, and waist will not bend because he thinks he is falling. I do everything for him from walking, getting up and down, eating, bathing, shaving, all potty chores, and he wakes, eats, and sleeps. He has a blank stare, can't communicate a complete thought, and thinks I am a friend who is his helper but knows my name. I cleaned out our bedroom and but a hospital bed in and I sleep beside him on a twin bed. He can't call out my name but makes a noise and I know he needs me. I have put bars all over his bathroom but they are not helping. He talks to me about his wife and thinks I am a friend who is helping him. He thinks strangers are living in the house with us. He told me, today, that alligators ate his wife when I asked him what happened to his wife since I am a friend....

I got him a walker last week but he can't use it. We now have contacted Home Health Care and they have sent a nurse to see us. They know nothing about Dementia with Lewy Bodies. They are going to put him on occupational and physical therapy.

I have to call the Neurologist tomorrow. Can anyone comment on this rapid decline....Thank you in advance for your comments. All comments appreciated. I am feeling desperate.


Sun Oct 18, 2009 5:21 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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(I'd like to suggest you delete your post under BevSmith's topic on sleeping. You should see an X mark in the upper right corner of YOUR post.)

betbob2,

Sorry you've had to join us here.

Why was the Risperdal stopped 2 days after it was started?

Personally, I wouldn't call decline since 1999 a very rapid progression. You might do a search of past posts containing the words "rapid progression" and see what others have said about this.

I suggest you read Boeve's "Continuum" paper on the LBDA website (lbda.org) immediately, and discuss following that treatment regimen with the new, on-the-ball neurologist. In particular, what about increasing the Aricept dose? Or switching to Exelon? Or adding Namenda? Or trying Seroquel, one of two preferred antipsychotics for those with LBD? (The other is Clozaril.)

Good luck,
Robin


Sun Oct 18, 2009 6:53 pm
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Joined: Sun Aug 30, 2009 4:46 pm
Posts: 10
Location: New Iberia, Louisiana
Post Rapid Decline
Thanks, Robin, for the rapid response. By rapid decline, I mean over the last 2 to 3 months. It has gone from walking unassisted about a mile each day, doing all of his own personal grooming with a minimum of assistance, eating unassisted with a prepared plate, and going to the bathroom unassisted to his current status. He needs full time care and it is like taking care of a baby. He can't even pick up his foot to put it in his pant leg.

The 10 years has been a very long journey for us. It is best described as the long good bye. However; until 3 months ago, he still had some quality of life. Now, I see very little of the man I have known for a life time and have been married to for 45 incredibly wonderful years. Sometimes it hurts so much I can hardly breathe.


Sun Oct 18, 2009 7:07 pm
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Joined: Sun Aug 30, 2009 4:46 pm
Posts: 10
Location: New Iberia, Louisiana
Post Stopping Risperdal
Oh, Robin, I forgot to answer your question about Risperdal. He was having bouts of anxiety and hullinations. After taking Risperdal for 2 days, his anxiety increased and so did the hullinations. Also, he wasn't sleeping at night. We were up about 8 or 10 times compared to getting up 2 to 3 times per night. Thank you for your concern.


Sun Oct 18, 2009 7:20 pm
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Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
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Gracious, you could be my twin in most ways! My husband this year started having pooping accidents and mostly in dr. offices. How embarrassing this is. I'm so glad the staff was so gracious to you. It is such a hard and akward situation. My husband took the sudden nose dive too this last year after 10 yrs of doing pretty well, and today he seems like he took another one and doesn't seem to know how to walk. Before he was at least getting around a little, but today each step I had to assit. I have to do all of his daily care too. Everything! I'm so struggling. To answer your question, I found that a lot of times on this web site they do take that drastic turn rapidly from being sort of dependent (like walkinga mile, mine used to too) to not knowing how to even pee! You described it perfect too about falling into bed like a tree, he falls on the toilet the same way and doesn't seem to be able to bend his knees or waist, Did you say you recently moved, that can agrevate the situation too, new surroundings, you being concerned about things, or any worries they pick up on.

Mine takes risperadol, low dose . 25mg two times a day, aricept and namenda. He also takes elderpryl for the parkinson symptoms that accomping DLB. Keep reading the posts and info. on this site, it's such a help. God bless and feel free to vent here too! We all understand.

Lori


Mon Oct 19, 2009 12:06 am
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Joined: Sun Aug 30, 2009 4:46 pm
Posts: 10
Location: New Iberia, Louisiana
Post falling like a log
Lori: This falling in chairs, bed, or anything that requires Bob to bend his body is one of the worst things that I am dealing with. It is so dangerous. I got a walker for him several days back and he can't use it for walking because he wants to pick it up and fall backwards with it. However, I have found a good use for it. It fits my kitchen table chairs by fitting it from the back of the chair around the chair forming arms on it. I stand him in front of the kitchen chair, put his hands on the arm of the walker with me standing behind the walker to stabilize it. Amazingly it is working for right now and he is able to eat at the table with me again with me feeding both of us at the same time. Before, he could only sit in his big recliner which is the only thing that would not tip over with him when he fell, with knees locked, straight back. Possible something you might want to try.

Thanks for your note and it helps when I find others who are dealing with many of the same problems.


Mon Oct 19, 2009 12:07 pm
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Joined: Thu Aug 30, 2007 6:15 pm
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Location: Charlotte, NC
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Tony does the same fallng like a log thing...so over the months I have adapted. I put the toilet cover on backwards and padded it with foam so that when he does fall back he rests on that (used duct tape to fix it) He actually can pee like that. The shower chair is another story...I put a fluffy towel on the back and he gradually lowers himself as I take off his shoes. Gliders in TV room at the facility allow for movement backways without tipping over as does his recliner in his room. No idea how they handle lunch and breakfast in the dining room. His walking has improved but the bending is worse...particularly when he takes his seroquel at night as this drug makes his parkinsons/walking worse...I have to make sure to get him in bed within an hour of when the drug is given. Seems to me that he does better when he can feel the chair behind his knees.


Mon Oct 19, 2009 12:55 pm
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Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101
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You mentioned that a home health agency team is coming to help out. The people who came here a few months ago were wonderful. The therapists taught my husband (and me) how to help him use the walker without falling. It doesn't always work, but even that little independence is important. Also they showed him (and me) how to get into the bed without just falling over it.With patience and lots of encouragement and using words over and over, he has learned how to do it. We now have routines for all the activities of daily life, and that helps him feel more secure. Even his hallucinations seem more friendly, and tonight, given the early sunset, they disappeared in the dark! Go figure!

It seems you have been doing everything yourself for too long. Welcome the help from the agency, and also see if you can find a way to get someone to come in to relieve you. I would never have the patience it takes if I couldn't get out and do some things that give me pleasure. I'm paying for the help and cutting back wherever I can to make ends meet, but it's the only way I know of to survive the twists and turns of this horrible fate that I share with all the rest of you caregivers.

Doris

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Wed Oct 21, 2009 1:26 am
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Joined: Sun Aug 30, 2009 4:46 pm
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Location: New Iberia, Louisiana
Post Update and it seems unbelievable
Yesterday, Jacob slept all day. This morning he woke me at 4:00 a.m. and was coherent (almost). His hallucinations are better, he is sitting in chairs better, and with the help of bars that I put all over his bathroom; he is getting in and out of the shower. The physical therapist came today and said he couldn't believe that he is the same person that the home health agency described to him to see for therapy. It is like he is back with me.

How long will this last? Am I the one who is hallucinating? :lol:


Wed Oct 21, 2009 4:08 pm
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Joined: Thu May 14, 2009 11:19 pm
Posts: 28
Post You are definitiely not hallucinating!
I am finding this LBD roller coaster experience to be so crazy. Like so many of you have said, just when I get used to the idea that my DH is really sick and is really going to die and it will likely be within a year, my DH seems to rebound. Of course, the rebound is short-lived and he returns to sleeping most of the time.

My DH sleeps so many hours a day. If he's not sleeping in bed, he's sleeping while "watching" TV. He has about 4-5 hours of wakefulness.

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Fri Oct 23, 2009 5:06 pm
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Joined: Thu Apr 02, 2009 9:41 am
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My husband is in a rapid decline, too, and it is heart-breaking. We had him admitted to an asst. living facility for dementia patients about 2 months ago, and he was able to do almost everything for himself, i.e., eat, go to the bathroom, walked just fine, and even was helping other residents who were in wheelchairs. Within 3 weeks, he is unable to feed himself, is incontinent, in a wheelchair, and cannot talk well enough to be understood.
He was put on Depacote when the decline started, but I have asked to have him taken off all his meds, since they do not seem to be helping at all. He had been on Aricept and Namenda and Clonozapam for several years, and the Aricept was recently changed to Exelon.
I am waiting to hear from his doc and the facility about taking him off the meds.
I would appreciate any comments. Thanks, Anne


Tue Oct 27, 2009 11:52 am
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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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See the experience of Gerry and others about bads things that happened once the dementia meds were discontinued. (Do a search of past posts on "discontinuation" or "removal" of "Exelon" or "Aricept.")


Tue Oct 27, 2009 7:31 pm
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Joined: Sat Jan 31, 2009 7:21 pm
Posts: 172
Location: Ohio
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Just curious, Anne: why did they change his meds & take away the aricept? My own geri-psych is reluctant to start excelon or aricept because he said that the side effects can be a real problem & since the dr. believes he is managing well enough he won't add them to his meds. Of course like so many of your LOs mine puts on a good show at his appts. Fortunately the increase in Risperdone has helped alot. Perhaps I spoke too soon. He just called me from the car dealership to say he was getting an oil change. He stops there at least 2x a week. (they are all very nice to him.) His oil change wasn't due for another 1500 miles. I'm trying to get him to talk to me before he does something like this, but it doesn't help. He's also taken to stopping unannounced at my sisters & my mom's. They have to remind him to leave or call so I know where he is! DEE


Wed Oct 28, 2009 9:45 am
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Joined: Sat Jan 31, 2009 7:21 pm
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Location: Ohio
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Sorry Anne, you did say why the meds were stopped. I read your post too quickly.

Also on the face of it my DHs behavior that I posted about seems normal enough. But I'm counting on all of you understanding that this is just one minor example of impaired executive decision making. According to previous testing, this function is shot for him. I believe that his latest behavior indicates a desperate attempt to prove he doesn't have dementia. He reminds me everyday that he doesn't have dementia because his PET scan was inconclusive. I just listen which, I believe, is the best way to handle this right now. Dee


Wed Oct 28, 2009 10:03 am
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Joined: Wed Sep 30, 2009 8:25 am
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So sorry to hear about your LO. My dear MIL was having problems since about 2000. In the past 6 weeks she has really taken a nose dive. She passes out from drops in blood pressure, has developed convulsive seizures, incontinence, and constipation, dehydration, and the list goes on. Poor dear knows something is horribly wrong but can't quite grasp it. I am on my way to visit a wonderful nursing home and start planning ahead for the inevitable. I will still try to keep her in our home for as long as I can. I put fresh flowers in her room and between the caregiver and myself we keep her safe, clean, and as content as can be expected. I hope you seek some help because it can make a great difference. Best wishes on your journey.


Wed Oct 28, 2009 2:53 pm
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