New to the forum

Vince607

I am a new member to the forum. Since I have joined, I have been reading many posts, most make me sad, but there are others that bring hope.

My wife was recently diagnosed with Lewy Body Dementia and Alzheimer's, moderate stage. I had suspected dementia for the past four years but the doctors and specialists were going down a different path. It has progressed to the point that I dare not be gone from the house more than an hour or so.

Fortunately, I retired 3 years ago from a real job so I can be around the homestead all the time. I have a business that I have been running out of a shop here on the property for the past 15 years that allows me some getaway time without getting away.

Now that my wife has a confirmed diagnosis I have been trying to glean as much information as I can. I have learned over the past few years that I have to constantly evaluate how I respond to my wife and how to help without being intrusive. Every night, when I am laying in bed, the events of the past day run through my head and I think how I could have better responded to something said or how I could have done something different. I think this will be a work in progress forever.

Anyway, I believe this is my start down a very difficult path.

Thank you everyone that reads this for letting me vent. Maybe someday I will learn the abbreviations used here.

Ed1937

Vince, welcome to the forums, but sorry you need them. It sounds like you have about as good a start as you could have, learning all you can about it. The more you know, the easier it is. None of it is easy, but some days are better than others.

If you click on my name, then my profile, you can scroll down to see this:

Commonly Used Abbreviations

DH = Dear Husband

DW= Dear Wife, Darling Wife

LO = Loved One

ES = Early Stage

EO = Early Onset

FTD = Frontotemporal Dementia

VD = Vascular Dementia

MC = Memory Care

AL = Assisted Living

POA = Power of Attorney

Read more

Martin55

Welcome Vince. Our stories are similar, my DW was diagnosed with VD and later added LBD. I had just retired when she was diagnosed. There is a wealth of info here that is helpful and from those who are also on this journey.

Lewy Body has some unique challenges. I have found this forum great for support and general dementia experiences. I don't know if you have found good LBD resources but a couple I found helpful were LBDA.org (Lewy Body Dementia Association), Lewy Body Canada, and Lewy Body Dementia Resources.

The best advice I got was to keep things in a routine. Today is laundry day at our house. We have grocery day, another general shopping day, meds at the same time each day, etc. Also I learned to schedule all doctor appointments in the afternoon.

Every PWD is different, I am sure you will find what works best for your wife.

Curious, how did they get to the diagnosis of LBD?

Vince607

Martin, the doctor said she had LBD because of her hallucinations and behavior. He also said she had Alzheimer's because of some other symptoms.

I do try to keep everything as it was as far as routine, that's something I learned a couple of years ago before the doctors figured her condition out. Why the doctors would not listen to me back then is beyond me, we had to go to a third neurologist before someone would listen to me and do the appropriate tests. Oh well, that's water under the bridge.

Thank you for your input.

Dio

Hi Vince, sorry you have to be here, but if you found this forum, this is the best place to be--with real life experiences from other caregivers who provide support, info and knowledge. My husband was misdiagnosed early on, too. Perhaps, it's his relatively younger age (60) or that the onset was so sudden. He went into ER with presentations of "major depressive disorder with severe psychosis." But now that I know what LBD is, in looking back, he had all the core symptoms of LBD during his 2 week hospital stay. Still, it wasn't diagnosed until 7 months later by his psychiatrist who had no prior experience with LBD, yet he doggedly researched and consulted with colleagues. I don't want to scare you, but LBD is a rough roller coaster ride. Wishing you and your wife a smoother journey.

Vince607

Thank you Dio.

It has been a roller coaster ride for at least the last two years. I could tell something was amiss a few years ago. We went to some very preeminent medical facilities over the last three years but they seemed to be focused on some other issue. I don't think they listened to me or my wife about her symptoms. We finally gave up going to these facilities and relied on our Primary care doctor for assistance. We have been seeing our primary care doctor for the better part of 30 years. He was upset that Duke and Wake Forest had mis- diagnosed her condition and just wrote her off. Our doctor has been seeing my wife every three months for the past 3 years and he could see differences, he finally recommended a neuroligist that listened and observed. Thank goodness.

But there is no cure, as we know. At least now, we can move forward.

I have learned every day is a new day, will it be a good day, I can only hope.

Elshack

Vince 607 Don't be too tough on yourself re: ruminating how you could have done something differently. Knowledge is power and the more you read about your wife's type of dementia you will be better able to handle all the twists and turns of this disease. You sound like a wonderful caregiver. It's a tricky balance...trying to handle it a day at a time yet realizing that things will worsen and making plans for the unknown future.

I have found this forum to be extremely helpful. Be sure to visit often.

Chammer

There is a podcast and Facebook page called Lewy Body Roller Coaster for patients and families with Lewy Body Disease. I'm not sure how I stumbled across it and I don't think DH has LBD, however, it is a good source for information and encouragement. The gentleman who started the podcast struggled w getting a diagnosis and finally was diagnosed working with his local small town PCP who wouldn't take "can't figure it out" as an answer!