The Painful Wait

CindyBum

My SO was diagnosed a couple of years ago with MCI; then last year with MCI complicated by severe anxiety and depression. The neuropsych talked with me, though, about how close she was to declaring it dementia, but the lack of changes in my SOs brain in the MRI kept her from moving in that direction. She recommended we find a more calm place to live than the very hectic Bay Area, meditation, walks and we got her on more meds to "slow" what might be happening and to help with the anxiety.

And so we moved to a quiet little place way up north and I've watched my SO not improve, but progress. We spent a good number of months pretending like the anxiety was still the cause, but are both slowly coming to a realization that it's not anxiety. And we keep telling each other that "we don't have a diagnosis yet and we're not neurologists" to hold onto this hope that it's not what we both really know it is.

I know many of you are in more difficult stages with your loves and that I will hate all of them as much as I hate this one, if not more. I thought for a while that denial and continuing to pretend would be ok. I was so worried about a diagnosis and wanted to live in that denial. Now, waiting for the diagnosis (we have an appointment next week) is both painful because of the feeling that I don't really want to know for sure but must, and terrifying that a doctor will finally tell me what I really do already recognize. Gah!

I don't really have a point, I guess, other than "this journey sure does suck". Slowly letting go of the denial and hope is already so dang brutal and knowing there will be very little that gives me any peace for years to come is really hard to take in.

Ed1937

I can only say that accepting what it is will make life a little easier. Nobody wants to hear the diagnosis, but once you get it, don't fight it.

CindyBum

Thank you, Ed. My head knows you’re spot on. My heart still needs to catch up.

mrahope

I second what Ed said. As much as it sucks, knowledge is power. Knowing means that you can do things to protect yourself financially and physically, as well as plan how to get the best care for your SO. That being said, we, too, lingered in the "something is not right" stage for a long while. None of this comes easy, but accepting it means you can at least try to enjoy the "now".

Quilting brings calm

Mom has been officially diagnosed with MCI and anxiety and depression for about three years. Neurology NP will not go further than that because she does so well on the 10 minute tests. She scored an 26/30 last time. Even though I am sure she’s actually stage 4( mild dementia). A retina specialist who has only seen her twice for a few minutes was well aware today of her cognitive deficits- even though he didn’t seem to know the MCI acronym. He did know when i said mild cognitive decline. MCI isn’t supposed to be readily apparent to strangers.

So I’m right there with you on the painful wait. So many questions: how long will this stage last, what’s coming next, how long will that stage last, what symptoms will arise, what do I do when AL isn’t enough, why can’t my dad understand what my mom has….

the group here is really supportive and the people whose loved ones are much further down the path than ours still take the time to help us at our point on the path.

LJCHR

We’re 2+ years in now and it has taken me a while to not be in denial. I educated myself as much as I could reading books, following this discussion group and meeting one on one with a professional from the Alzheimer’s Association. I was constantly second guessing myself and doubting what I was seeing. Now that I have finally accepted this is real, I am handling it better. I guess my DH is moderate stage, but we are still able to stay on a routine and function pretty well.

I am dreading the progression (as all of us do) but thanks to the support and resources offered to us it makes it easier.

SDianeL

I know how you feel. Been there. The Neuro Psychologist did the 3 hour test for my DH 2 years ago. She did not give a diagnosis, just that he had visuospatial issues and MCI and failed the test. The Neurologist after doing a CT Scan made the initial diagnosis of Dementia-probably vascular. Recently I sent the Neurologist a list of his behaviors which included saying he said he saw a big black spot in his right eye (he had been to the eye doctor recently and they said his eyes are fine), and she sent me back a message saying his behavior and CT Scan are consistent with ALZ-Posterior Cortical Atrophy. I was devastated. The Neurologist never even mentioned that before. So diagnoses are sometimes difficult even for the doctors. My DH cannot have an MRI so they may never get a 100% diagnosis. Please keep us posted.

Lgb35

My DH has a diagnosis of MCI while they can’t give us the official diagnosis of what is causing MCI they have told us it is a neurodegenerative disease and will progress and to get our affairs in order. DH does not remember that conversation and is still waiting to hear what is wrong with him. There are days when I feel like this really isn’t happening and other days I wonder if he should still be working. He focuses so much time and energy on working there is little room for anything else. Our son is in the military and lives on the other side of the country. He is expecting his first baby in November. I have just booked my first trip to see my son alone. It was a sobering moment. My oldest son lives with us and can keep an eye on his dad while I am gone.

it feels like during the early stages you can “forget” what is happening at times but other times it too obvious to ignore.

hang in there❤️. We are on this journey together