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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
Post Lost
My husband has this terrible disease. I was just informed yesterday afternoon, he is already into stage 4 and headed into stage 5. Although he seems fine during the day other than wanting to sleep for an hour or so every couple of hours his thinking is fairly clear. At night is when he has the delusions and hallucinations. We recently moved and that was when I noticed a huge change in him and really started to dig in further. I just feel so lost, in a new community and no one really around that I can talk to as I haven't made any friends yet except for one lady that lives in our complex and we are just starting to get friendly now.


Sun Dec 14, 2008 7:54 pm
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Jasper,
Welcome to the LBDA forums, I am glad you found us. Often a move can be tramatic and cause a decline until things start to level out for them, who told you that he was in stage 4? There really are no true stages of LBD. I know the caring spouses support group worked on stages but they are nothing scientific. If he is still doing fairly well during the day your lucky.

Here is list of some possible stage 4 symtoms:

PHASE IV POSSIBILITIES

Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care.

The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services.

• Continuous assistance with ambulation/transfers
• High risk for falls
• Needs assistance with all ADLs
• Incontinent of bladder and bowel
• Unable to follow content of most simple/brief conversations or commands
• Speech limited to simple sentences or one-to-three-word responses
• Requires 24-hour supervision
• May need electronic lift recliner chair
• Parkinson’s symptoms need regular medical monitoring
• Autonomic dysfunctions need regular medical monitoring
• Choking, difficulty swallowing, aspiration, excessive drooling
• Increased daytime sleeping
• Hallucinations prevalent but less troublesome


Sun Dec 14, 2008 8:12 pm

Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
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Thank you for your response Irene.

Quote:
• High risk for falls - I have to watch him all the time for falls, to the point, and I know this is wrong, that I will make him stay sitting and I will get up and get whatever for him.
• Needs assistance with all ADLs
• Incontinent of bladder
• Unable to follow content of most simple/brief conversations or commands - has a lot of trouble following if the sentence is too long and too complicated but can still follow simple conversations still
• Speech limited to simple sentences or one-to-three-word responses - more often than not responds with one or two words and other times its usually short sentences.
• Autonomic dysfunctions need regular medical monitoring - he is at a stage where only sometimes he needs the monitoring and he will usually listen to me on that.
• Increased daytime sleeping
• Hallucinations prevalent but less troublesome - we have these hallucinations more in the evening that at any other time, he has had kidney problems for years and he is always wanting pain meds, but I have found that these throw his mind way off and I don't have any in the house, right down to no tylenol even. He keeps asking me for the meds from the doctor that was a white pill and then the doctor gave him some other medication so that he could paint them red. LOL, I have to laugh at something through this, never to his face though.


I got the stages from a list of 7 stages that was on a site with a link from this site. I know that it is not a carved in stone list but it is only a guide. I already felt that from just what I have read on here. It was Henry's gerontologist's assisstant that gave me your site addy. She said I would find more here than any other site that she had found, so I thank her for giving me this info.


Sun Dec 14, 2008 9:26 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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Jasper,

As I mentioned in connection with your other post, please read the Boeve "Continuum" paper from the LBDA.org website. First line of treatment in LBD is a dementia med, and it doesn't seem your husband is taking one.

Please see if there's an Alzheimer's Association chapter near you with a support group you can join. And your local senior center may also have a spouse caregiver support group. PD support groups can be useful too. (You can never have too much support.)

Good luck,
Robin


Mon Dec 15, 2008 1:38 am
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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
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I have read the LBD.org website and am sorry I didn't tell you that in the second post to you. I just found out about this on Friday so no, Henry isn't taking any meds yet for it. When I read that site the first time (it was another site that the MOA had given me to look over, just these two and I obviously missed on the LBD.org one)I have no idea how I missed the part that I was looking for, I was probably in panic mode as I was reading it. Thanks for the jolt to me to go back and read it.


Mon Dec 15, 2008 2:09 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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Jasper -
here's a link directly to the Boeve "Continuum" paper:
http://www.lewybodydementia.org/docs/DL ... nuum04.pdf
Robin


Mon Dec 15, 2008 3:14 pm
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Joined: Sat Dec 13, 2008 12:52 am
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Location: BC, Canada
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Thanks Robin, I just took a quick look at it and when Henry goes to bed I will get into - a lot to read and absorb but it looks very informative.


Mon Dec 15, 2008 4:58 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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Many of us have had to read it several times, increasing our understanding of it each time. Ask your husband's neurologist and/or psychiatrist to explain the parts you don't understand but think are relevant/important for your husband's situation.


Mon Dec 15, 2008 6:51 pm
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Joined: Sat Dec 13, 2008 12:52 am
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Location: BC, Canada
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I will and I can't get over how much I have learned about this disease since Friday and never having heard of it before. I can't thank you and these forums enough.


Mon Dec 15, 2008 7:05 pm
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