Lethargic and a bit bitter....

Anna2022 · January 16

I'm here, on Tuesday afternoon, and there's a howling wind outside and it's freezing cold. This may be contributing to the lethargy I'm experiencing.

Last week, we met with the doc to discuss the results of DH's PETScan. It was inconclusive, noting mild diminished activity without a specific dementia pattern. DH has previously had the MOCA and an MRI which are consistent with these results. So, the doc offered traditional meds for Alzheimer's but DH refused. The doc offered the new monoclonal antibody meds, but DH refused. DH refused any more testing. DH chose to "wait and see" what develops, all the while stating that nothing was wrong with him (anosognosia is a bitch). The doc said to call when something changes and that was that.

I wanted some clarity that I thought might come with all this testing. But we don't have clarity, we are on our own, waiting to see what happens next. After that appointment last week, I felt abandoned, even tho I know we have been on our own from the start - I wholeheartedly get that "The Calvary is Not Coming" as has been stated so eloquently here on this Forum. What do I feel now, today? Honestly, I still feel a bit abandoned, somewhat cynical, a bit bitter and a bit lethargic, but I'm trying to change my mindset and figure out how we can thrive, one day at a time.

Thank you for listening. Thank you for being here/there. Thank you for your lived wisdom. All of it helps.

charley0419 · January 16

The getting them to take meds is a chore, my also anosognosia. She hates Nurologist as the clock test gets her crazy. Told can’t drive that was nitmare. Just got rid of car yesterday.

BPS · January 16

I have those feeling to sometimes and then they go away because I get busy taking care of life, then they come again. Like it has been said "it is like the tide it comes in and it goes out". Sometimes it stays in longer then others. Right now I am having some anxiety dealing with my wifes delusions and we also have an adult daughter with Autism living with us. To top it off my wife has started passing out once in a while, usually after a fall. We have a referral and appointment with a neurologist for the end of Feb.

M1 · January 16

Anna, the sad truth is that you are on your own. If it helps at all--I doubt if you're losing much by his refusing to take medications. The monoclonal antibodies are very hard to administer (IV infusions once or twice monthly) with high risk of serious side effects, and that standard medications don't add much (statistics are that they benefit about 1 in 12 of those who take them).

BPS, the passing out is worrisome. That should not be due to dementia--but could relate to seizures, or to a cardiac problem. I'd be loath to put a pacemaker in someone with dementia, but you may want to pursue diagnosis just so you know what to expect.

BPS · January 16

I think it has to do with small seizures. Hopefully the neurologist can answer that question and we have had some hart test done and may go back for more after seeing what the neurologist comes up with.

Thank you for your input M1

CindyBum · January 16

Hey Anna. I feel you. My DW has been willing and interested in diagnosis and in medications, so at least I don't have that to deal with. But, getting a diagnosis has been so frustrating. Had her first neuropsych evaluation in 2020. It was MCI. Another in 2022 = MCI complicated by caregiver stress and anxiety (though the neuropyschologist almost said Alzheimer's). Have another neuropsych eval in March 2024, where I am certain that dementia of some sort will be the diagnosis. It's a weird space to be in, this no diagnosis limbo.

I can easily track her progression, can read the stages of dementia and have no real question that she's in Stage 4, gently wading her way into Stage 5. Even though I feel I know these things, I still feel in limbo and in some ways, even paralyzed by not having a doctor saying the words I don't want to hear, but that I know I will hear.

Of course that makes a person lethargic and bitter. I have that too, often. The only thing I can do is acknowledge it, roll around in it a bit, and then get up the next day to see if I'm less lethargic and bitter. Not super inspiring, but turns out I realize that I move through the deep low tides and still get high tides now and again. Knowing that keeps me going so far. Hang in there!