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Presently, my DH is in a skilled nursing facility. Recently he's had 2 UTI'S and is seeing bugs or ants climbing on the ceiling, he also starts accusing me of having affairs. Two weeks ago he accused me of having an affair with his male nurse (who is in his mid 30's and getting married), is this a normal problem for people with LBD that they accuse spouses of being unfaithful and seeing things that aren't there? He just had his last injection of antibiotics on Wenesday, Apr. 10th. How does one deal with this; especially when he spreads these rumors not only to the nurses, PT staff, but also to patients doing rehab that don't know he has dementia and don't know me. I am just tired of the accusations, because one of his accusations included a family member and now there is a huge rift in the family.

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It is not rumors, it is false beliefs.
Staff has seen & heard all this and worse before. As far as family, well eventually he will included them in his imagination drama, so eventually everyone will realize it’s dementia speaking.

My mom had Lewy. Her hallucinations were regarding animals - not threatening but there - & that her apt while in IL or her room once in a NH would be used by others for meetings while she was at a meal or activity; and while still living in her home that guys were going thru her garbage & garage in the service alley and then that gypsy orphan lived in upper floors of her NH. Being robbed was routine. I think it’s a way for them to accept things that their brain cannot process properly anymore.

What makes all this especially hard with Lewy is that they often appear so competent and cognitive and still good on their ADLs in the beginning and mid stages. So yeah they get “believed”, but anyone who deals with him regularly knows it’s false beliefs / dementia speak. . Alzheimer’s is much more abrupt and more obvious that they are on another solar system.

If the move into a facility is new, a lot of this imo will settle out as he becomes used to the rhythm of routine of the place and less fearful. Once his UTI clears, it may be good for you to ask for a care plan meeting to go over his medications to get his anxiety decreased and paranoia lessened. I’d also suggest you try to see that he gets tested for uti even if he doesn’t “present symptoms”. For men, UTIs often become a yo-yo pattern of a UTI that becomes a C. Deff infection. Both NHs my mom was in had anyone who was positive for C. Deff to be hospitalized (it’s highly contagious and most NH don’t have isolated rooms or staffing to deal with it) till it clears and only then can they move back to the NH often 2-3 weeks later. The NH-hospital hopscotch can make them really confused and fearful atop the usual dementia.

The social filtering that we are able do in speaking with others seems to fall away once there’s dementia. You may find out things that are hurtful and if you & your family can’t get past it, you may want to get therapy.

A friend of mine, 1 of 5, has an oldest brother who was her mom’s beyond favorite. Her mom’s world revolved on what she could do for him... he is pretty shiftless, always needing $, had the parents invest in various business ventures, pay for his kids tuition and camps, etc. Stuff like the other 4 got a handwritten recipe for birthdays, but Stevie got a new truck. Her parents were not well off, her & her sisters did countless rescues of her parents needing $ cause Stevie had an emergency. Well oldest sister (POA) needed bone marrow transplant so all the kids were tested for a match cause really if there’s 5 at least 1 or 2 or maybe possibly 3 should be a “match”...... yeah you know what’s coming...., Stevie was a half brother. She is still not over it.
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Reply to igloo572
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My mom has LBD and when she has a UTI, she is totally off her rocker! BUT, I personally know other elderly people and they get just as “crazy” when they have a UTI, AND they don’t have any type of dementia.

Once my mom told the ER Dr. that she had fallen & my sister & I left her in the floor all night & wouldn’t help her up. My sister lives 2 hours away so it couldn’t have been true, but thankfully the DR didn’t report me for elder abuse or something of the sort!

Dementia people sometimes live in their own world (most days my mom is fine) and when their in their “own” world there’s not a whole lot you can do. A lot of the patients in rehab are also out of their minds & won’t remember the stories, and the others realize what’s going on & don’t hold it against anyone. Any family member holding a grudge because of these “stories” is just looking for an excuse to cause problems.
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Reply to mollymoose
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First "rule" with any dementia....there is no ALWAYS when it comes to symptoms.
Common with LBD is hallucinations
Common with all types of dementia is the thought that someone is having an affair. But is that a result of the dementia specific or is it that the person does not have a concept of "relationships" you talking to a male nurse might be misconstrued as an affair, at some point he may think you are his wife, or he may think the woman down the hall is is daughter. There is no telling what goes on in the mind of a person with dementia...of any kind.
If an accusation has caused a rift in the family then there is a problem with education and understanding that this is the disease not the person that is talking and you can not accept that something that is said by your Dad as the truth. You should get as much information as you can and next time you have a "family meeting"...and I hope you do have such gatherings (could be a simple dinner or a "real" meeting..you can discuss the situation. Might actually be good to have this "meeting" as part of the care plan where your Dad is. There will be professionals there to explain some of the typical behavior
Learn all you can, if you pass the information on to family and they get it..great but take what you learn and pass it on to others. Use your knowledge to help someone else understand.
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Reply to Grandma1954
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Loving someone with dementia is a marathon, not a sprint.

Send family members information about delusions and hallucinations in dementia and hope that they will educate themselves. If they allow DH's illness to cause a huge rift in the family, they must not be very intelligent people. You may be better off with no contact with them.

Are you participating in a caregiver's support group? Sometimes NH's have them on site; many hospitals and other community organizations sponsor them as well. You will gain strength from talking with others who are in the same boat and get guidance from a social worker on how to deal with these issues with family.
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Reply to BarbBrooklyn
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Always cause? Considered normal behavior?

There is never always a symptom with dementia. Once you have met a person with dementia you have met a person with dementia.

Hubby spreading untruths? He is in a nursing home that deals with dementia all the time. Staff there have heard it all. And since therapists surely work for the nursing home have heard this from other patients, often. I imagine some with dementia have even told others that they were murdered last night.

Somehow you need to stop letting this behavior stress you out and make you angry. Don't take things personally. I know it is hard and once you learn to redirect him or go along with his delusions you will be better off yourself.
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Reply to gladimhere
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Those with LBD are prone to visual hallucinations, it's one of the hallmark symptoms even without a UTI. As for the paranoia about you having affairs - I've read of that and seen it with someone I knew who had LBD, it seems to be fairly common as well. Have you visited the Lewy Body Dementia Association website?

https://www.lbda.org/go/10-things-you-should-know-about-lbd
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Reply to cwillie
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