Hi @jen26 I sympathize with you on all three of these!

On the physician front, I finally convinced our GP to refrain from those issues with the pat answer of ‘you’ll have to ask your specialist those questions’. Our GP was in way over her head on this area of care, but refused to acknowledge that. So this was a compromise I crafted.
The balancing act between work and caregiving was a huge difficulty for me. When the demands of the two conflicted it was a ‘no win’ I could never figure out. I could only ever land on doing a quick calculation of the importance of my wife’s needs vs. work. It’s a TOUGH nut to crack.

My wife was very ‘normal’ looking, but her executive functions were shot. I grew thick skin, wrote several people off who couldn’t accept this, however did have a few incidents when our children exploded at adults who commented meanly about, to, or made fun of, their mom.

It’s a set of constant, ever changing/evolving conditions for sure.

Strength, Courage & Peace

Jen, my experience with doctors included one who thought my 81 yr old husband was suddenly schizophrenic. On another messaging support group called LBDCaringSpouses, I have met a couple of women and men whose husbands or wives developed LBD at a young age as your husband has. You might want to reach out in their direction as well. And find a good neurologist to help with your journey.

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?

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.