I think I figured out the main issue

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I've been here for years and I've mentioned a lot that after learning about PD, I think for my husband it's a secondary thing (or raging fleas) triggered by some other ailment.

I even considered some type of non-Alzheimer's dementia, because there are these weird neurological/cognitive impairments that developed over time. His executive functioning is very low, his sense of time is impaired far beyond your typical ADHD or similar issue, his sleep issues are bizarre, and so on.

Given he hallicinates, the most obvious thing to consider is schizophrenia. But I didn't think he fit the mold. He's not mentally disorganized, for example, his speech makes perfect sense. But apparently disorganized schizophrenia is only one type.

So I think he has schizophrenia. Or, probably, schizoaffective, since he seems bipolar too.

He has no diagnosis and will not be seeking one, but he is getting appropriate meds (including antipsychotics) and thank our lucky stars, he is fully med compliant, of his own volition.

He has been clinically stable for about 1 3/4 years. However, that's not to say normal - at all. He is quite unwell, but in a stable way, so that part is a blessing.

He is in fact one of the most self aware people I've known, and seems to have worked on himself and tries to manage himself. But it's like he's using crutches, he is still impaired. I cannot depend on him emotionally or practically. He also, despite his self awareness, has blind spots that I believe he can't get around. So he knows he is mentally ill but has no idea how bizarre his life is.

I just wanted to share this update. Thanks for walking this journey with me. And even if SZA is the main issue, I would like to stay here anyway because I think the tools are the same. II've joined a SZ forum but it's not as advanced as this place.

[Poison Ivy]

Thank you for the update, square.

[Srcyu]

Yes, we're lucky to have this forum.
I'm glad you are staying, you offer a lot. You've put a huge amount of work into understanding what's going on with your husband. He's lucky that you are so willing to support him.



milly

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Thanks, PI and Windmill.

As an update on me - since things have slowly calmed down over time from a really, really awful stretch of a few years, we've reached a fairly peaceful last six months and I've had enough space to heal a bit.

Again, things are not good, and our marriage is disconnected. We're roommates, and only see each other maybe 2-4 hours per week (lterally). But those few hours are peaceful enough. Being open and honest is not possible, but we can chat about nonpersonal subjects. It's a minefield that has been partially demined - still have to be careful but I can walk around a little.

So anyway, blowups have been rare. On his part, he has pulled himself back together much quicker (say, an hour vs 24 hours previously) and not gone as far. For my part, I've detached emotionally and my fight or flight has gone down from "existential crisis" to "man this guy is cracked, I'm going to go do something else."

On the plus side, I've been able to take better care of my health because I now have a little extra in the tank. I feel the best I've felt in at least 10 years, if not more, and I think it shows as well.

Having extra in the tank also means I can let crap roll off me easier. Hard to do when you're down to the last crumb.

On the minus side, I still cannot join my husband together in my mind to one human being. If he is schizo, I can certainly relate to the root wird "split," though I'm not sure if this is a common thing with the disease or not. I can soothe my mind thinking about the effort he made to be better. But, terrible memories pop up. He has done unforgivable things, and he doesn't even remember them (he's in a hazy state and his memory is very poor, which is a SZ thing). Nothing can be fixed, I can't tell him "you did X," I just have to throw it back down the well again. He would go PD if I brought anything up - blame me, etc.

I have a financial issue coming up in the fall, and some decisions to make. My personality likes to plan ahead and get a handle on options. Circumstances have removed my agency over these past few years and I've started sitting on my hands rather than being proactive.

In some ways this is bad. In some, it's good. I don't think I'm a controlling person but ceding control has been good for me. Watching and waiting, as a discipline, has been good for me. I was explicitly raised that I was responsible for everything in my life, and while there is a good side to that, I needed to learn that I don't need to solve everything, even things that affect me.

So I am waiting. By the end of the year, I will need to take dome action, I don't know what. It's on the way back burner, and the front of my mind has greenlighted that status. A very odd state for this born and raised problem solver.

[SonofThunder]

Yes, we're lucky to have this forum.
I'm glad you are staying, you offer a lot. You've put a huge amount of work into understanding what's going on with your husband. He's lucky that you are so willing to support him.

milly

+1

SoT

[notrightinthehead]

So glad to read that you are in a better place and give yourself more self care. You also seem less anxious, letting go of some control is a sign of that. I appreciate your well thought out approach I can see in your posts and I think you have been helpful to many on here. 

[Srcyu]

I love some of the expressions you use. "I just have to throw it back down the well again," is such a good mental visual. I will remember to use that one in future.

"and the front of my mind has green lighted that status."   Another one that will stay with me.

You come across strong and intelligent, may "the crap keep rolling off you."



milly

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Thanks, nrith and Windmill. Nrith, I appreciate the feedback that I seem less anxious. I'm chill by nature but was wound up in a bal for some years.

I'm reading Failure is Not an Option by Gene Krantz, NASA Flight Director most famed for his role during the Apollo 13 mission. This kind of thing just really gets me excited, the idea of having a problem like that and getting everybody in a room and saying "here's the equipment and consumables we have, figure out new procedures, processes, mission rules, trajectories, workarounds to get these guys home safe." And just breaking the problem down on every level from minutae to the big picture, keeping options open, making the calls based on expert judgment.

So, I love that stuff. I have tried to problem solve the hell out of my situation and, well, wait and see is a reasonable approach sometimes. I'm not waiting for the problem to solve itself - it won't - but who knows what factors might change.

[SonofThunder]

Thanks, nrith and Windmill. Nrith, I appreciate the feedback that I seem less anxious. I'm chill by nature but was wound up in a bal for some years.

I'm reading Failure is Not an Option by Gene Krantz, NASA Flight Director most famed for his role during the Apollo 13 mission. This kind of thing just really gets me excited, the idea of having a problem like that and getting everybody in a room and saying "here's the equipment and consumables we have, figure out new procedures, processes, mission rules, trajectories, workarounds to get these guys home safe." And just breaking the problem down on every level from minutae to the big picture, keeping options open, making the calls based on expert judgment.

So, I love that stuff. I have tried to problem solve the hell out of my situation and, well, wait and see is a reasonable approach sometimes. I'm not waiting for the problem to solve itself - it won't - but who knows what factors might change.

What an encouraging post Square!  As an intj, I also enjoy breaking down the details and turning unknowns to knowns. Im so happy to read you believe you have self-diagnosed properly.  That surely doesn't lessen what traits you deal with, but knowledge is good.  The book sounds like something I would enjoy. I understand what the title says, yet may not understand its meaning. 

The last time I heard that title phrase stated was by a fellow adventurous business owner.  I disagreed with him at the time he made the comment, as I believe he stopped short in his planning on the low end.  That proved to be true, as a decade of his entrepreneurial adventure ended in total business and personal financial collapse, as he had not planned for failure. He hit boundaries at every turn, mainly caused by his bullheadedness, that blinded his reality as he kept pressing forward when the roadsigns said no.  Others who benefitted from his continued attempts were not advising he stop, as that would have ended the lucrativeness they were enjoying at his expense.

Im all for being optimistic and stalwart in the headwinds of difficulty, but failure imo, need to simply be in the planning, so that there is a clear, defined roadmap for when it is reached.  If my friend had defined it, and planned for it, then failure would have still been an option, but one that simply has a plan.  Proper failure is imo, respectable if planned for.  Without his planning and definition, he fell farther than failure and reached a place he cannot financially recover, nor does he have the years left in his life to be gainfully employed to recover enough for his elderly living.  He and his family may suffer greatly because the failure line was undefined. 

So, imo, failure is simply a defined positional point in proper planning, that when reached, the procedures at that end of a plan, get activated.  Failure is simply the name for a low-end switch. 

As your Out of the FOG comrade, I encourage you to define failure, and keep that switch prominently in the planning.  True failure imo, is not planning for the worst.  Like Milly said, "Im glad you are staying".  Your clear thinking input here is so beneficial.

SoT

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I also enjoy breaking down the details and turning unknowns to knowns. Im so happy to read you believe you have self-diagnosed properly.

i have seen that you like turning unknowns into knowns. Personally, while I also enjoy that, what I really like is pulling the pieces of the puzzle together and figuring out *to my satisfaction* how it all works. Data points are of course useful but I'm okay with unknowns as long as I *feel* I have an understanding of the picture. I appreciate that you said that I "believe" I have lay diagnosed properly because indeed, I do not profess to know, but my satisfaction comes simply being satisfied in my own mind.

Now, Son of Thunder, I have thoughts on failure - naturally 

Yes, failure should be accepted and planned for. And ultimately, failure is not a concern. A scientist may "fail" at an experiment yet surely learns something. Great things have been built on failures. (Getting more esoteric, I'm not sure I even embrace great things anyway, but we'll leave that).

However, I understand Gene Kramtz's use of the phrase in the context of a flight director for Gemini and Apollo missions. The book isn't an entrepreneurial or other self help book, but a memoir of his role at NASA.

NASA accepted that a mission may fail. Apollo 13 didn't go to the moon. NASA accepted that. But getting those guys back was imperative, for the sake of the astronauts and their families, for the sake of the astronauts waiting for their turn who were willing to take that risk, for the sake of the overall mission of space exploration, for the sake of American citizens who invested into it.

So, the phrase was appropriate, everyone had to leave it all out on the field, at no point could they shrug and say "there's just no way."

So Apollo 13, technically a failure, was an absolute triumph.

[bloomie]

Square -  Having a context for the behaviors we are experiencing with a loved one like you describe here can release us on some levels I have found.

I think for my husband it's a secondary thing (or raging fleas) triggered by some other ailment.

I am grateful you have found your way to having enough fuel in the tank to care for yourself. That is huge and so important. I think most of us here know what getting to that point entails. The steep incline of accepting, grieving, self reflection, difficult decisions, disengaging.

I am also grateful for all of the insights and support, sharing and perspective you bring to this community. We wouldn't be the same without you!

[SonofThunder]

I also enjoy breaking down the details and turning unknowns to knowns. Im so happy to read you believe you have self-diagnosed properly.

i have seen that you like turning unknowns into knowns. Personally, while I also enjoy that, what I really like is pulling the pieces of the puzzle together and figuring out *to my satisfaction* how it all works. Data points are of course useful but I'm okay with unknowns as long as I *feel* I have an understanding of the picture. I appreciate that you said that I "believe" I have lay diagnosed properly because indeed, I do not profess to know, but my satisfaction comes simply being satisfied in my own mind.

Now, Son of Thunder, I have thoughts on failure - naturally 

Yes, failure should be accepted and planned for. And ultimately, failure is not a concern. A scientist may "fail" at an experiment yet surely learns something. Great things have been built on failures. (Getting more esoteric, I'm not sure I even embrace great things anyway, but we'll leave that).

However, I understand Gene Kramtz's use of the phrase in the context of a flight director for Gemini and Apollo missions. The book isn't an entrepreneurial or other self help book, but a memoir of his role at NASA.

NASA accepted that a mission may fail. Apollo 13 didn't go to the moon. NASA accepted that. But getting those guys back was imperative, for the sake of the astronauts and their families, for the sake of the astronauts waiting for their turn who were willing to take that risk, for the sake of the overall mission of space exploration, for the sake of American citizens who invested into it.

So, the phrase was appropriate, everyone had to leave it all out on the field, at no point could they shrug and say "there's just no way."

So Apollo 13, technically a failure, was an absolute triumph.

Hi Square.  Understand what you wrote and well written. I have not read the book, nor have taken any time to learn about the mission.  For the "sake of the astronauts" accept that efforts toward success would be continuous.  You wrote:

"I'm okay with unknowns as long as I *feel* I have an understanding of the picture.."

I believe this is a very healthy and proper statement regarding unknowns.  I want to recognize them, not close my eyes regarding them, ignoring them or somehow denying them.  That "picture" is what I believe is the mindfulness that is now assisting me in this steady process of understanding my past, my present and my future.  Im so encouraged in the study of mindfulness and wish I was aware of the practice much earlier in my life.

SoT

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Bloomie, very much appreciated.

SoT, great thoughts on mindfulness. I have lately been interested in self discipline.

[square]

Thank you, user, I really appreciate it.

Yesterday was a not good day, and I eventually lost my cool. I kept it for a long time and under quite a bit of duress, though.

But it wasn't just an ordinary hard day. There's more stuff to throw down the well now. Can't even share it because to talk about it means I can't box it up and chuck it over the side.

It hurts, my friends.

[square]

Yeah. Sorry you're feeling it too.