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3DaddysGirl Asked November 2016

My dad's behavior has been getting worse on a daily basis. What can I expect at this point?

My dad, who has dementia (hasn't been diagnosed as LBD, but my own research has me wondering if it is) , moved in with us two years ago, after we lost Mom. At that point, he was still functioning mostly independently and had just given up driving (voluntarily, thankfully!). Over the past two weeks,  he has gradually been getting worse in his reasoning, remembering, and coherent communication, and hallucinations and paranoia have gradually increased. However, over the past two weeks, it seems as though each day brings a new problem or change. He has become mean and belligerent, complains about most everything, and accuses me of horrible things. I've come to dread each new day, wondering what new, awful change I'm in for. What is going on in his brain? How much worse can it get? Part of me wants him to plateau but most of me is just asking the Lord for mercy. As awful as it is for me and the rest of our family, I can only imagine how scary it must be for him.

NYDaughterInLaw Nov 2016
On this forum you need not worry about tact. We have those same questions running through our heads. Yesterday, I had to tell a close friend that something was "dependent upon how long my inlaws live" and, just like you, I worried that I had been tactless.

My MIL is only a few years younger than your dad. She has a neurodegenerative illness and also is very frail. We try to keep her stress down. She does not have a definitive diagnosis because that can only be done in an autopsy of her brain. It took her years to get a working diagnosis. And it took at least another year to get her medications sorted out. All that was back when she was not frail and had hope that she had something curable.

What you are going through is so very difficult and painful. If your gut is telling you to back off from finding a label then that is the right thing and the most loving.

3DaddysGirl Nov 2016
Thank you to all of you for your kind hearts and caring responses. When this "weirder" behavior started, I did ask about a UTI. The dr just prescribed antibiotics without even testing (Is that common?!?!). We did do the round of antibiotics, but nothing changed. My thoughts of Dad's dementia being LBD are recent and based on my own research ... I will ask his doctor about further testing. I don't know how to ask this tactfully, but at 89 and very frail, is getting a specific label worth the stress the testing will cause him?

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Sunnygirl1 Nov 2016
I'm so sorry your dad is not doing well. I think I would see his primary to rule out things like UTI, medication reaction, other infections, etc. I'd also try to get a definite diagnosis on what is causing his dementia. He might refer you to a neurologist. Not everyone goes this route, but, I did with my cousin because she was so young at age 62 when she was effected so severely. I wanted to rule out things like brain tumor or some kind of treatable disorder. As it turns out, she had Vascular Dementia, which her primary said on our first visit.

She had similar behavior with the hostility, mean temperament, confusion, etc. I'd ask about medication to help with his anxiety and/or depression. That made a huge improvement with my cousin and brought her much relief.

freqflyer Nov 2016
Daddysgirl, I was thinking the same as Babalou above, have your Dad tested for an urinary tract infection [easy to do for him, pee in a cup]. Usually if a doctor's office has a testing lab on site you will know the results in a few minutes. Or you can take Dad to an Urgent Care type facility that can also run a test.

My own Dad ran into an issue with an urinary tract infection, for him he was seeing ants on the walls and in his food, and he was determined the ants were there. Antibiotics helped with this situation.

NYDaughterInLaw Nov 2016
I am so sorry for you and your family. The comedian Robin Williams had LBD and his widow just wrote an essay “The Terrorist Inside My Husband’s Brain” published in the medical journal Neurology. You may recall that Williams committed suicide two years ago because of the LBD. Evidently his cortisol levels were very high.

BarbBrooklyn Nov 2016
If this is a change in your dad's mental status, you need to talk to his doctor. It could be a UTI. Or his psych meds may need tweaking.

JessieBelle Nov 2016
BTW, if what I've heard is true, hallucinations and paranoia can be most difficult in the earlier stages. Cross fingers that the paranoia phase passes quickly. That can be one of the hardest symptoms to handle. We want to get angry, but it is really just the disease, so what do we get angry at? Frustrating and sad.

JessieBelle Nov 2016
I know how hard it is, Daddysgirl. If you think it is LBD it would be good to try to get a diagnosis. Drugs such as Aricept are useful for LBD. If he is like many people with LBD, he'll go through stages. Some stages are worse than others. We have someone on the group whose husband had LBD. Maybe she'll be along soon with more to add. I know you'll find the group useful. Many of us are going through similar things, so understand how you're feeling.

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