Is it just me? My husband has Lewy Bodies Dementia. Some days are difficult, some seem ok.

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Sanray Asked October 2019

Is it just me? My husband has Lewy Bodies Dementia. Some days are difficult, some seem ok.

When it is just the two of us, he seems confused, disoriented, angry, difficult to communicate with, delusional. When others are around, he seems more normal. He has always been the type to imagine the worst possibility of any ailment: sprained wrist = needs cast on the arm... common cold = probably pneumonia... stomach ache = probably cancer.

When with other visitors or family, he seems more normal. I don't know if he's really ill and needing medical help or if it's just some crazy attention getting thing due to the difference in behavior. I don't even know how to describe it! He tells me he's suffering from gastrointestinal pains, then tells the Hospice nurse he's feeling fine. What do I do? When do I take his complaints seriously and call an ambulance? I'm lost.

Alzheimer's & Dementia Dementia Behaviors Lewy Body Dementia Spouse

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score 1 · Answer 1

My husband has Parkinson's and I'm going through the same things right now. He is delusional and hallucinating. I'm having a hard time dealing with him. I have to get him into a skilled nursing facility.

He has been to the hospital three times in October. The last time he requested I call an ambulance. I was hoping that at one of the ER visits they would keep him overnight and I could beg the case manager to keep him two more days so I could get him in a skilled nursing facility.

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score 2 · Answer 2

My brother has early Lewy's. Some days he is GREAT, right on, and even can describe his symptoms, how he knows they are not real, how he has to "work backwards" from what he sees to what is reality. He is the opposite of your case in that he is better with me, and in calm circumstances. ANY ANXIETY and all is lost. For him, and it runs in our family, anxiety is a huge enemy and makes all symptoms much worse.

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score 2 · Answer 3

Thanks for the thoughtful reply! I, too, have been using the same tools. A number of years ago I took a Behavior Modification class and have leaned heavily on what I learned. Simply put, you cannot change anyone else's behavior - only your own, i.e., response and reaction. It isn't easy, but it does help. I had not thought about the possibility of his letting his guard down, but that surely resonates and helps in understanding. Hugs to you, too!

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score 1 · Answer 4

Hello Sanray-
sorry for your troubles...
my husband sounds similar to yours. He has PD and dementia. He’s been going through different ailments too: Restless Leg Syndrome, extreme lower back pain, orthostatic hypotension,.... it seems each day is a new ailment to talk about. I listen, then redirect. I try not to worry too much, as there isn’t much I can do.
Two years ago he called his family & friends to say goodbye ( he thought he was dying that week), but he’s still here, some days more perky then ever.
His neurologist says just to make him as comfortable as possible.
Since you have hospice involved, that should be a good resource to monitor his pain.
And my husband always acts better around others, too. Maybe they can let their guard down with us, and share their confusion?
Since I’ve been using some tools : changing my tone, joining his world & avoiding arguing, reasoning and correcting... things are a bit better.
Hugs to you.

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Oh my gosh, that sounds just like my husband who has PD and is delusional. He is always telling me he is dying, asking when he is going to die, when he's going to a home, he is on the way to his execution, begging me to kill him, etc.

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Is it just me? My husband has Lewy Bodies Dementia. Some days are difficult, some seem ok.

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