LBD Video Series: Fluctuations & Hallucinations

My husband has a son who is an anesthesiologist. He lives 1000 miles away and sees his father for a few days once a year. During those visits it's Showtime, so he has never seen the fluctuations. He rejects the diagnosis because "the only test which confirms LBD is autopsy.". Because he is a doctor, others in the family accept his word, even though a geriatric psychiatrist, a psychology group, and a neurologist have made the LBD diagnosis and the medications being prescribed for my husband are based on the LBD diagnosis. I am the 24/7 caregiver and the children don't believe what I tell them

Hello:
As a LBD patient I can understand some of what you are describing. You as the caregiver are there everyday and notice the changes - maybe subtle and others more in your face. Some seem to show up out of nowhere and others gradually do their thing. You know the whole scoop.

How long ago was your husband diagnosed?

If I may ask - is your husband aware of his condition? Is he able to communicate to his son about it? I ask because sometimes when a person refuses to accept a diagnosis or other changes in life - if the person that is afflicted acknowledges it then they might start to accept it.

Are there other children that are dealing with this situation?

I go through the fluctuations and like your son in law but my oldest son doesnt see that. Since I told him a few years back about the diagnosis I could tell he didn’t want to believe it. I see him a few times a week along with my grandsons. That always brings out the best in me. So when I see him I’m happy and a little more social and with it. As you mentioned - you are there 24/7. You know about the swings, and the highs and lows. He only sees the good days.
When my son sees that, it builds on his non acceptance.
Now -over time - he does acknowledge some changes. Your challenge is that his son doesnt see him often enough to experience the other side of things.

Do you or the family have chats on a platform like zoom? That might be a way for them to see the not so good times.

Do you think a video of when your husband is feeling the nasty effects from Lewy would help?

You have an extra challenge with your son in law being in the medical field. He is correct - unfortunately - in his statement about a diagnosis can only be 100% known at autopsy.
Has he ever acknowledged that there might be an issue but just not LBD?

You mentioned several docs across different disciplines working together to support the diagnosis. I’m sure your husband and yourself have endured neuropsych testing.

What other tests have they used to determine the LBD diagnosis?

Do you feel it might be possible to have his son talk with his docs to hear what they have to say and then he can ask questions? Maybe coming straight from another medical professional it would help?

This is a disease that not only affects the person with it - it is a whole family thing.

Sometimes family counseling is in order.
Have you considered that possibility?

Please keep posting and you will find many caring and compassionate people here that have it in their hearts to help.

You are not alone - use Mayo Connect as one outlet to share concerns and yes - joys!!!

Peace
Larry H.

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.

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.