Extreme anxiety, fatigue, apathy in DLB

kindwaryr

I have done a lot of internet searching but can't find these as major symptoms. After about a year of testing my spouse was diagnosed with MCI, probably caused by DLB and secondarily by Alzheimers. Most days she awakens early worrying about something, then when she gets up about 10 she immediately feels tired and lies down on the couch for several hours. She has stopped driving voluntarily. The only times I leave her alone is a for a few 3 hour periods a week to play pickleball. She is prescribed max dose of Lexapro, 7.5 mg Mirtazapine and 50mg daily Buspar. We don't have a local neurologist but recently had an appointment at a major motion disorder center about an hour away. Didn't like his bedside manner so we switched to the attending but no follow up appointment until October. Meds are managed by a local psychiatric nurse practitioner that we like. He's been upping the Buspar dose to not much effect.

I feel like we don't have anyone that coordinates her care. "Who's driving the train?" I keep bringing up these symptoms at every appointment but they seldom address them at all. I sometimes get the feeling that they don't really know what to do. i make a big deal out of them as I feel if they were addressed effectively we would at least have a chance at some quality of life.

SDianeL

I found that Neurologists were useless. Same with Primary Care doctors. The only help we received was from a Geriatric Psychiatrist. You are right. They really don't know what to do because there is nothing they can do except prescribe medications to address behaviors. Most of those medications cause drowsiness. My DH is now in Memory Care for 6 months and due to agitation they have him heavily medicated where he sleeps most of the day except they wake him up for meals. He's so sedated that he can't carry on a conversation. They medicate him because he was cursing and hitting the caregivers. They can't have that. It's heartbreaking. The book "The 36 Hour Day" might help you understand the behaviors and tips on how to deal. Also I would not leave her alone at all. With Alzheimer's and on medication, if something happened would she know what to do? Right after my DH's diagnosis the nurse asked him what he would do if there was a fire in our apartment and he couldn't answer her. I never left him alone after that. So sorry you are going through this.

M1

Welcome to the forum. When you are using the abbreviation DLB, do you mean Lewy Body Dementia? I think it's typically LBD, just wanted to be sure we were talking on the same page.

I agree completely that the psychiatrist is probably your best bet: but the sad truth is, these are symptoms of the disease, and there is probably not a lot you can do to change it. You might ask which symptom bothers HER the most, versus which ones bother YOU the most—and I would suspect the answer would be the anxiety bothers her, but the apathy and fatigue bother you. I completely understand your frustration, but there is probably not much you can do about it. Any anti-anxiety medications (even the antipsychotics, which may be contrainidciated in Lewy Body) are going to be even more sedating.

It's all tough, every single bit of it. I hope this forum can be of some help to you.

kindwaryr

Should be LBD. I appreciate the insights.