← Return to LBD Video Series: Fluctuations & Hallucinations

Newsfeed Post

Newsfeed Post in blog Dementia Hub

LBD Video Series: Fluctuations & Hallucinations Jul 7, 2021 | By Nick Rethemeier (@nrethemeier)
Comment receiving replies
@judithannek

Thank you, Larry. My husband can tell that something is wrong but does not want to hear the words Lewy Body. He was diagnosed 3 years ago but had symptoms at least a year before. He was much worse at the beginning and was in a nursing home and then a memory care facility for 14 months. After he started the Rivistigmine patch we were able to live together again and he can do most ADLs. I am hoping that at the next neurology appointment they can talk with him about what's going on. I do get a lot of support from the LBD Caring Spouses online group.

Jump to this post

Replies to "Thank you, Larry. My husband can tell that something is wrong but does not want to..."
Larry | @larryh123 | Jul 7, 2021

Hi Judith:
I’m so glad that the patch is having a good positive effect and that he is able to be at home.
You mentioned that your husband doesnt want to hear the words Lewy Body. That is normal. When we heard those words- it wasn’t what we wanted to hear nor what we thought of when planning our retirement years - I was 56 when diagnosed.

I think it is the word following Lewy Body that is the real kicker - at least for us - dementia. Many of us know what we hear and maybe know someone with dementia. When it is facing you firsthand - it is a totally different thing.

When this hits home - it is a shock for all involved.

How did those words effect you? What were you feeling?

My wife and I had some time to prepare ourselves for the diagnosis. We went through 2 rounds of neuropsych testing which was indicative of LBD. The time that passed between the testing and coupled with the original diagnosis of Parkinson’s kind of led us to “know” but not know if that makes sense.

With your husband not wanting to hear the words - do you think this plays into his sons and other family members reluctance to want to accept it?

I think it is a great idea to get your neurologist involved to help with the personal and family aspects This is a journey not just for you and him, but for the family.

We have found a lot of help through my neurologists at Mayo for direction to the right people to help. I had been seeing a psych door for a few years before this even came up for depression - which was attributed to the Parkinson’s at the time.

She was able to give us help with many issues that helped us. A great resource.

I really love having a place like Mayo where all of my docs can see the others notes while you are at the appointment. That has saved us time and duplicated testing over the years. I’ve been a Mayo patient for 12 years.

I’m very glad that you have a good group of support. Have you checked into local support groups? Sometimes having a closer group is great along with the online communities.

Please keep posting with your joys (yes joys) and concerns. Let this be another outlet for support. Lots of folks going through similar situations with this disease - like myself.

For my wife and I - open and honest communication had been a great tool. Now that communication is beginning to be a challenge - we are very happy we took the time to work on communication early.

Stay safe and well. Keep us in the loop. We are here to listen and try to help.

Peace
Larry H.

VIEW AND REPLY