Lewy Body Dementia at age 51: Anyone else with early onset LBD?

Oh, @barfly Such sad, difficult news. I would think your husband will be in the hospital as long as he is getting antibiotics. While he is there, you might want to ask a friend to “tour” possible rehab centers with you. The social workers or discharge planners on his unit can give you some names or suggestions. They can be extremely helpful. Just tell the nurse that you would like to meet with one. When i was a nurse in the hospital, we met with the discharge planners every day to develop a workable plan. Having your input makes the whole process go smoother. This can all seem like too much and be overwhelming. And it is. But, remember, you want to maintain some control and do what’s best for your husband.
These 2 sites may give you some hints and ideas on what to look for:
https://www.nia.nih.gov/health/how-choose-nursing-home
https://www.aarp.org/caregiving/basics/info-2019/finding-a-nursing-home.html
May i ask your husbands age? How long has he had Lewy Body Dementia? Becky

My heart just breaks for you and your family. LBD already comes with enough "curve balls" and now you have a totally new health problem added. I have absolutely no advice, but I just wanted you to know that we are thinking about you and praying for peace as you and yours go through the next few hours, days, and weeks.

Hi Jen, I'd like to add my welcome and to invite @larryh123 into this discussion. He, too, was diagnosed with LBD in his 50s and may be able to add perspective from his side.

If I might, I'd like to comment on your challenge number 2. I wish we could ban caregiver guilt forever. We will never feel like we're doing enough, but we are! We're doing the best we can given the situation of today or this hour. That's all we can do. You're an experienced education teacher. You might not be putting in the same amount of extra hours because there are only so many hours in the day, but I bet with your experience, you are able to give those kids exactly what they need when you are present.

I think a good mantra at any given time you feel pulled in many directions, you could assess the situation and ask "Right now, how can I do my best for my children, my husband, and for me?" Out of the 3, someone will need the lion's share of your focus, but don't forget that you can't give your all to all, all the time. And don't forget you as part of the equation. We're only human.

@IndianaScott, what do you say about Superman/woman and caregiving?

My husband is 76. He is getting sedation drugs not antibiotics. Last night his Hemotocrit and Hemoglobin dropped again. They added a second transfusion. Sedaded with Fentanyl and Propofol going on 4 days.
He has had LBD symptoms for about 4 years. Diagnosed at the Mayo Clinic in Rochester one year ago. He is being treated at the UAMS (Arkansas) Movement Disorder Clinic in Little Rock.

Hi @jen26 One of my favorite lines is that Superman and Wonder Woman only exist in the comics, not in caregiving!

@barfly I think i may have confused myself! I didn’t mean to say that your husband is on antibiotics, but that he may be, considering the reflux and aspiration. I’m very sorry for any confusion i caused. You have enough to worry about without me getting in the way!!! Becky

Thank you for your kind thoughts and prayers.

Hello:
I was diagnosed with LBD when I was 56. I was experiencing symptoms for a couple of years earlier - just contributed it to stress and Parkinsonism.

Before his diagnosis of LBD - did he ever show signs of Parkinson’s?
I was originally diagnosed with Parkinson’s then changed to LBD with atypical Parkinsonism.

I see a couple of other posts that I will give some input to.

Peace
Larry H

Hello:
I can chime in from a patients point of view. I am a LBD with Parkinsonism patient - diagnosed at 56.
Everything you noted is - well part of it.

Finding a doc that actually understands LBD can be a challenge. I have been a Mayo patient for 12 years. I was blessed to have a team of neurologists / neuro psych folks and an osteopath.

I do have other friends that have gone through many docs.
If you haven’t looked here - the Lewy Body Disease Association - (LBDA) has some good resources.
Lbda.org - look under the resources tab.

Also - this is a good post from someone caring for her mum with LBD.
Some good insight that we have learned from.
https://www.lbda.org/lbda_story/10-things-i-wish-i-had-known-sooner/
If you dont mind - how was the diagnosis made?
What type of testing was done?

Your work and taking care of a loved one is a challenge. My wife was hesitant to continue working when I stopped driving a couple years back.
My kids check in on me a couple times a day. Mostly phone calls and a couple of visits during the week.

Our church has a group of folks that check in on folks like myself and your husband.
Would that be an option for you?

My wife has now stopped working - mainly age related aches and pains. I try and make sure she goes ot and has some alone time to enjoy some of the things she likes. I cant take much heat and cant walk too far. She likes to walk on the beach and pick up sharks teeth.

It is important that - you - his wife and caregiver - take care of yourself - both mentally and physically. Please dont feel guilty for working. It sounds like you enjoy it and get some gratification from it. That is an outlet for you.

Jus like my wife’s walk on the beach - of Goodwill shopping - that is healthy for you.

We need you to be healthy and to find some joy. If that is through your work - so be it.
When you can smile - we smile - even if on the inside.

And the socialization problem. As things progress I have more problems with communication and being overwhelmed in some social settings.
I am very conscious of the problems I have getting the words from brain to mouth (that is when I can come up with the words). This causes a sometimes awkward situation where I want to be part of the conversation but it flies by me because I cant speak up in time.
My wife and I are working on her being my communication liaison. When we are in a small group and having a conversation - she can tell when I want to chime in. She will jump in and say - Larry - did you have something to say?

That can open up another can of worms as I sometimes will mistake that for saying I cant speak for myself - when in actuality that is the case.

When I am in a larger crowd - sometimes all of the noise and activity is overwhelming to the point that we have to leave.

I had experience being an instructor and bi-vocational Pastor - so I was adept in being in a lot of social settings.

People will think it is odd. They wont understand.
We have gotten to the point that we have accepted this as a reality and tell people that I have a traumatic brain injury and leave it that. My neurologist said it can be described as that - except it is degenerative.
That will normally make them be a bit more understanding. If they want to know more - we just say - we are dealing with it and leave it at that.

Sometimes mood swings are a big issue when around other people as well. I think that one is harder for me. Being somewhat normal then boom - I am acting like a 3 year old. That is embarrassing for both of us.

I can say from someone that sees this disease “from in here” we appreciate our caregivers. We realize the sacrifices you make for us- even if we dont or cant convey it. The comfort that I get from her cannot be described.
We never want to hurt you. We arent in control many times. It is the disease talking. It is not personal. Our hearts know our true feelings. Please always remember that.

Peace
Larry H.

Before diagnosis of LBD he had several falls, and several hallucination episodes. His mobility gradually became more difficult. We attributed some if these symptoms as a vision related issue. So, bottomline, we were not thinking Parkinson's.