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 Struggling to accept reality... 
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Joined: Fri May 26, 2017 5:06 pm
Posts: 2
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Post Struggling to accept reality...
... because my dear 30-year partner in life was recently diagnosed with Parkinson's Disease Dementia (PDD which you probably know is a "variety" of LBD). He's had Parkinson's for 23 years, since he was 47, and we thought we would escape the cognitive impacts because he's so active and positive and engaged in life -- and otherwise pretty darn healthy. In the last 5+ years, however, things have gradually changed. Now I know that his scary driving, increasing gait instability, balance issues, inability to get/stay organized, plan ahead or remember stuff or communicate clearly (or understand/remember what I say) -- its all down to his d@#n disease!

Now I know it's PDD, but what it has looked like to me up until we got this diagnosis was he's just choosing to let his stuff get out of control, just needs to get his priorities straight, or just indulge me a little with some better order around the place! I mean, every surface -- nightstand, bathroom counter, dining table, end table, as soon as they are tidy, gradually acquires little piles of this and that -- and he leaves piles of magazines, opened mail, half finished soda pop, candy wrappers, dirty socks, laundered but not folded clothes, tools, etc etc etc laying all over the place! I try leading by example, but when he finds one item of mine in the open, it's like, see? you left that out! I also would get aggravated periodically and call for a clean-up, so he tells me WHY he is soooo busy (working on this, that, the other project - all great, but why live in a such a MESS?!) or promises to "take care of that" and "do better" and maybe he does one small, 10-minute cleanup of, say his nightstand. Then time passes, I give up, especially if no company is coming, and I just start overlooking it all again, after all how important is it, really? And let it go on for a while longer, lather, rinse, repeat...

Sorry, I sound like a mean woman, and I'm not. Truthfully and deep down, I don't really care if all the scrap metal in the front yard (accumulated for his art projects!) ever gets put under the house or if all four project vehicles ever get turned into what he has planned for them. I could ignore a lot more stuff for longer when I was working. Now I'm retired and I guess I need to fill my own time with activities I like, since he has his...

Of course, really what I am is sad and frightened. Thanks for reading, and good luck and love to us all,

Fri May 26, 2017 5:55 pm

Joined: Fri Mar 10, 2017 11:36 am
Posts: 135
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Post Re: Struggling to accept reality...
Hey Sandy, one of the resident nuts (read: LBD patient) here. I can only really address two parts of what you described but they both mean alot to me and whats left of my life. First is the bit where you blamed him for doing stuff on-purpose. Relax, my wife did it too, thankfully only for a while. But it drives home something that may help you understand whats happening on the other side of the (conceptual) wall.

You see, at the point where the SO involuntarily becomes a caregiver, the patient is going through a special kind of hell and the irony is, your own disbelief should allow you to glimpse into that hell. When my wife was thinking I was doing stuff on purpose to make life harder, to be mean, to intentionally be dense, slow to catch on, I was having my reality chipped away bit by bit and I could not understand what was happening to me but worse, because reality (time, events, etc were all very malleable) was shifting under my feet, I had no way to express to my SO what was happening because it made no sense to me either. The only constant of that period was the pain and pointless guilt I felt for things not only beyond my control but things beyond my comprehension. Thankfully this period was mercifully short (compared to what other patients have to deal with).

Heres the thing of the thing as they say. Well I am sure someone said it somewhere. Anyhow, think about it: why did your SOs behavior anger you so? I won't pretend to speak for others but its just possible that your accepted view of reality, the one you built over a lifetime with the SO, suddenly wasn't always there anymore and if they could be OK sometimes and not others, they had to be doing it by choice, because in the reality that you knew, they didn't act this way. Well thats how it is for us, our own reality is a memory, changed in hundreds of subtle ways to the point that at times its hard to accept whats going on around us. So if you can see how having your reality screwed with for no obvious reason, think how it is for us. You can escape back to the office, or where ever you have support. For us there is no escape, no days off for good behavior, no parole board to hope for. So for the patient to stick with trying to be part of life with all this going wrong, I say kudos to the patients who try.

And thats the second, albeit minor point...there isn't alot of good info out there on LBD ATM so alot of what we learn, we learn from each other. One thing I am noticing a pattern in is that when the patient was Type-A in his or her past life, they adapt to or deal with LBD differently than those that were not so driven. The multiple projects describes this place too, although I have had to ramp back the projects which were becoming overwhelming (a crowded room can be to me ATM) or dangerous (chance of lethal explosion put a damper on things). Still, I am wired to explore and learn, solve puzzles and figure things out, have been since I was a kid back when Arthur was king. Having projects keeps me sane(r) and engaged in life. The fact that most of my projects make medicine for me is a bonus too but I would be doing something even if not....and your SO sounds really similar.....

Sat May 27, 2017 1:58 pm

Joined: Fri May 26, 2017 5:06 pm
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Post Re: Struggling to accept reality...
Jeff, thank you for your thoughtful and honest reply. I can only imagine what it is like to have your "wits" messed with... I love my partner/SO and do not want to stop him doing all the projects he loves - I do hope he will recognize where to draw the line before he blows something up :^)

Seriously, he took a car to Bonneville in 2012 to join the 130 MPH Club, successfully made his qualifying 100 MPH run, then blew the motor on the next run. He had a little electrical fire in it in 2013, then the event was rained out the next few years. Last year was looking good, but he couldn't get the car finished and play golf and work on his rat rod and and and...

This year he's trying again, but he's also keen to say yes to golf invitations, and we are also still trying to get our home together. We moved back in here a year ago and there are these piles and boxes of miscellany that accumulate and get moved around the place, now mostly filling one room. You said you would have trouble confronting such a room -- how can I help him with that?
thanks again and I wish you and your SO the best!

Sun May 28, 2017 3:13 pm

Joined: Sat Mar 25, 2017 1:32 am
Posts: 48
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Post Re: Struggling to accept reality...

Jeff and I are traveling much the same road, eerily so as a matter of fact, he is just a little ahead of me. I can wholeheartedly second what he's saying about our reality constantly being chipped away, never knowing which of our senses we can rely on from moment to moment. I know in my case my lifelong hobby has been woodworking and I have been very organized about it. I had a plan of how to complete each project and I had completed it at least once in my head before I ever picked up the first piece of wood. Now, each project is an adventure and there is nothing I can do to control it. I will start one section when another will draw my attention and off I go, leaving the first partially done and lying where I left it because, "I'll be right back to finish it.", yeah right. And steps that used to take me minutes to complete now take me 5-10 times as long just to figure out how to do them again, then try to do them. So I uundrsand and sympathize with where your husband is coming from with his disorganization and lack of attention. And I also understand much of your situation as I was one of the primary caregivers for both my parents who had dementia. Neither role is one to be envied.


Mon May 29, 2017 11:02 am
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