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 Husband in hosptial with LBD 
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Joined: Sun Feb 09, 2014 2:18 pm
Posts: 8
Post Husband in hosptial with LBD
Hi everyone. My name is Debbie and my husband Ray was diagnosed in 2011 with LBD. We were of the understanding that this disease would slowly progress, however the week of Jan 11,2014 things went downhill rapidly. My husband's hallucinations were more frequent every day, until the night of the 11th and they were terrible. He was seeing people jumping in and out of our windows and trying to steal things from our house. I asked him if he wanted me to call the police (my way of getting him to the ER) and he said yes because of the people stealing things.

He was admitted that night. I feel like we take 1 step forward and then 4 back. He has become combative to the point that it has taken 2 nurses and 2 security guards to restrain him. He was on constant observation until last week. He is still restrained in a wheelchair with arm restraints and a lapboard making it impossible for him to move about. I'm not sure if he even knows me or the family most of the time. He has 4 grown children.

We are all so frustrated with the psychiatrist who is treating him. His practice is the only one that works at this hospital. We are setting up a family meeting with him this week. When Ray first went in, he was still hallucinating, but wasn't physical, he was able to walk alone or sometimes needed one person with him.

We are just so frustrated. Has anyone else experienced such a rapid decline with LBD? It's so hard to know what if it is the LBD or the medications causing all of these things to happen.

I'm glad to be a part of this group and learn more and more about LBD. I've read books and searched the internet until I feel there isn't a free spot in my brain for any more information. I do belong to an Alzheimer's support group and have learned a lot there about dementia.

_________________
My husband Ray was diagnosed in Oct 2011 with LBD and passed away on Feb 28, 2014. Rest in peace my love


Sun Feb 09, 2014 9:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3314
Location: Vermont
Post Re: Husband in hosptial with LBD
Welcome, you sure have your hands full. The rapid, precipitous declines are one of the most distinguishing features of LBD, unfortunately. They call it a roller coaster disease because some people do tend to regain skills for a while, but then they can have another big decline. It is 1 step forward, 4 back quite often. However, if your husband has been treated as though he has Alz., that may be a big problem. Some meds that work for Alz. patients can make LBD patients worse or even be fatal.

I'd suggest you do a search here on the meds he has been prescribed. I have read that Haldol (can't remember others) can be a terrible drug for someone with LBD yet is often administered at the ER when someone comes in with dementia symptoms.

You will need to be his advocate, so make sure you read up on the meds and then take that info. in with you if you have to, to show the drs. Many of them still know little or nothing about LBD. You may need to do a lot of educating. Many of us have had to do that.

Let us know how things are going and come back anytime. Best, 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.


Sun Feb 09, 2014 9:38 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: Husband in hosptial with LBD
Welcome to the forum Debbie! You do have your hands full! As Lynn says you can use the information on this site to educate the doctors and hospital staff about LBD. I found with my mother that the drastic changes were usually related to a change in medication - either new meds or mom stopped taking the ones she had, or doubled up... Hopefully they can get your husband stabilized while he's in the hospital! Hang in there!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Tue Feb 11, 2014 2:20 am
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Joined: Sun Feb 09, 2014 2:18 pm
Posts: 8
Post Re: Husband in hosptial with LBD
Jammies wrote:
Hi everyone. My name is Debbie and my husband Ray was diagnosed in 2011 with LBD. We were of the understanding that this disease would slowly progress, however the week of Jan 11,2014 things went downhill rapidly. My husband's hallucinations were more frequent every day, until the night of the 11th and they were terrible. He was seeing people jumping in and out of our windows and trying to steal things from our house. I asked him if he wanted me to call the police (my way of getting him to the ER) and he said yes because of the people stealing things.

He was admitted that night. I feel like we take 1 step forward and then 4 back. He has become combative to the point that it has taken 2 nurses and 2 security guards to restrain him. He was on constant observation until last week. He is still restrained in a wheelchair with arm restraints and a lapboard making it impossible for him to move about. I'm not sure if he even knows me or the family most of the time. He has 4 grown children.

We are all so frustrated with the psychiatrist who is treating him. His practice is the only one that works at this hospital. We are setting up a family meeting with him this week. When Ray first went in, he was still hallucinating, but wasn't physical, he was able to walk alone or sometimes needed one person with him.

We are just so frustrated. Has anyone else experienced such a rapid decline with LBD? It's so hard to know what if it is the LBD or the medications causing all of these things to happen.

I'm glad to be a part of this group and learn more and more about LBD. I've read books and searched the internet until I feel there isn't a free spot in my brain for any more information. I do belong to an Alzheimer's support group and have learned a lot there about dementia.


Things have gotten much worse since the last time I posted. Ray in now in an Assisted Living Facility and Hospice has been called in. He doesn't know anyone, sleeps mo the time, mumbles with only an occasional word that can be understood He can not walk, talk,feed himself, basically he needs total care. He has only been at the new facility for 2 days and already seems more at peace. He has a private room and Hospice has provided him with a "rock and go" chair which is wonderful. They can practically lay him down in it. All I do is cry. I can't believe this is happening. I still get to see him and touch him, but I don't know where he is. I told him yesterday that when God calls him, I will be fine and our friends and family will help me. I won't be fine. I'm too emotional. He has a living will, so those choices have already been made. Has anyone ever had a LO in this condition and they bounced back? I know I'm hoping against hope, but I want to rewind life about 10 years.

I don't know how to reply to a topic that has already been started....help please! I'm also trying to change my p/w to a permanent one, not the temporary one I got when I forgot my password! Help! :shock:

_________________
My husband Ray was diagnosed in Oct 2011 with LBD and passed away on Feb 28, 2014. Rest in peace my love


Sat Feb 22, 2014 11:45 pm
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 66
Location: Canada, Ontario
Post Re: Husband in hosptial with LBD
Hi Debbie; I'm so sorry that you are going through this very hard time. Did your husband have symptoms for some time before beng diagnosed? The one thing I know is that antipsychotics can cause trouble for LBD people. They can increase the hallucinations for sure. Sleeping medication is another that is not good and has to be carefully perscribed. The awful thing about this disease is the roller coaster effects and the sudden declines as you never know when it will occur. My thoughts and prayers are with you and your husband. Anne


Sun Feb 23, 2014 12:55 am
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Joined: Sun Feb 09, 2014 2:18 pm
Posts: 8
Post Re: Husband in hosptial with LBD
Thanks Anne. He showed signs of short term memory loss for a couple of years before he was diagnosed. When he was in the hospital, the dr. messed with his drugs almost daily. That was one of the main reasons we moved him because he was declining rapidly. I pray there is hope for a comeback, but that is probably selfish of me. I don't want him to linger at this lack of quality of life.

_________________
My husband Ray was diagnosed in Oct 2011 with LBD and passed away on Feb 28, 2014. Rest in peace my love


Mon Feb 24, 2014 2:08 am
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Joined: Tue Dec 31, 2013 12:55 pm
Posts: 16
Post Re: Husband in hosptial with LBD
Debbie,
My heart breaks for you. It is so difficult to see your LO decline and there is nothing you can do about it -- except LOVE them. Please know that you are not alone in this. The people on this site are amazing and understand the disease, the emotions and the total sense of loss that goes with it, not only for the patient, but for the caregivers as well.
My prayers are with you both!


Tue Feb 25, 2014 12:06 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: Husband in hosptial with LBD
Hi Debbie,

I'm so sorry this is happening so fast for you. I hope the ALF and hospice can keep Ray comfortable and I'm glad you have their help. I've jotted down the instructions for replying to a post and changing your password here. Hopefully that will help. keep us posted on how things are going. Take Care.

To reply to a post just click on the POST REPLY button (orange and purple) at the very end of the posts. A new window opens up. Type your reply and click the SUBMIT button at the bottom of the screen (it's gray).

For your password, if you're already into the site, you can Click on the User Control Panel in the upper left corner of the screen, under the Lewy Body logo. Then click on Profile under the list of Options. Click on Edit Account Settings and the change password screen opens up.

To change your password you have to enter your e-mail address twice (the one you registered with). Then enter your new password twice and finally your old password once (that would be the temporary one you're using.) then click the SUBMIT button. As long as you've typed everything correctly your new password will be set! I just had to change mine and it took me 4 tries...

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Wed Feb 26, 2014 1:59 am
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