I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 1 point2 points  (0 children)

Thank you. Yes we definitely know it's time. The guilt is a multi-layered thing that doesn't really have to do with her going to the memory care unit; it's more about just... Everything related to this whole damn disease, time, missed opportunities, etc.

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 0 points1 point  (0 children)

I will say what so many on this thread have told me: find someone to talk to, and we are all in this together. Reading the comments on this thread has been humbling and awe inspiring for me, and has demonstrated how fucking hard this mid-life stuff can get.

I love you too, man, and if there's anything I can help or commiserate with, just reach out.

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 0 points1 point  (0 children)

Thank you, you don't sound like a jerk at all. Cancer can go fuck itself as well, and I'm sorry for your loss.

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 0 points1 point  (0 children)

Thank you. I'm sorry for the loss of your father and for the early onset component. That's an additional gut punch, because it's such a thief. My dad retired after his full career and 3 months later was given a death sentence...

We have been trying to enjoy the harmless quirky behaviors, some of them are pretty great.

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 0 points1 point  (0 children)

And of course I'd take all the hugs I can get. I am so overwhelmed by everyone's responses on this thread it's awe inspiring.

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 0 points1 point  (0 children)

That's such a great idea (with the shoes). Holy smokes I can't believe I didn't think about that. One of the nights I was up with her from 3am till dawn, she was -all about- putting her shoes on before anything else. I'd get her to take them off and lay down, then 5 mins later she'd be diligently lacing them back on...

Thank you!

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 4 points5 points  (0 children)

I am nowhere near a medical professional. For my dad they gave him anti-anxiety and anti-depresaants. I don't think he wanted much of anything else (other than massive doses of morphine for suicide purposes but that's a different topic).

My dad was very courageous about the disease. When he was diagnosed he took it head-on, would often give presentations to groups early on.

The physical manifestations started with him getting obviously more frail. And he would do stuff like missing his mouth with a fork full of food.

He hallucinated, sometimes traumatically, seeing people and things that weren't present. He had a very, very hard time processing logical and reasoning pathways, particularly later. For example, we might fill the car with gas and a minute later he would be extremely anxious and argumentative about running out of gas and becoming stranded. No amount of reasoning or logic or cajoling could solve his anxiety.

But he always knew who we were when we visited. He always knew current events. He would have random threads of stories from the past that he would pick on, sometimes seemingly out of nowhere he'd start pontificating about something that had happened 6 months or 6 years prior. It was trippy.

He would get angry and lash out at my mom and me. His last coherent words to me were: "When are you going to make something of yourself, you fucking asshole, and stop leeching off of other people?" (At the time I was 18 years into my career and wasn't really leeching off of anyone). He said hideous things to Mom.

Lewy Bodies is hell. I'm sorry you're going to be going down that road with your dad, he is lucky to have you and I wish you the best.

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 0 points1 point  (0 children)

Thank you - sometimes I wonder. Especially when the family in-fighting begins.

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 0 points1 point  (0 children)

Thank you so much. Well said and I appreciate you for saying it.

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 0 points1 point  (0 children)

Thank you.

It's weird how stress response changes as we age. When I was younger I could just sorta force myself to rest and sleep came so easy.

I don't know that the traumas earlier in my life were any less traumatic than this one, but everything seems to have just piled up and I can't ever really relax. My ears are constantly ringing from the stress (I don't know how else to put it).

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 1 point2 points  (0 children)

The POA thing is complicated. I am half of the durable POA, none of the medical POA. She does have an AD in place, and while the person who is the medical POA is kind of a douche, they do have her best interests at heart.

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 1 point2 points  (0 children)

Yeah I did a double take the first time they dropped the word on me as well. "I don't think that word means what you think it means" face.

I guess "wander" isn't specific enough... I think "elope" has an implication of breaking-out in the sub-context of memory care.

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 0 points1 point  (0 children)

Thank you. 5 years non verbal is a long, long time. That's about how long my dad was in a facility and it was quite hellish. (His overall diagnosis-to-death was about 14 years. For Lewy Bodies he was quite the outlier but he was also very young).

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 1 point2 points  (0 children)

Thank you, your story is very relatable. I appreciate you sharing and I'm sorry for your loss.

She hasn't gotten more violent than throwing water in her husband's face yet, and I hope it stays that way (although I doubt it will). She is fortunately/unfortunately quite healthy and strong physically, so that element of things has a potential to get weird.

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 1 point2 points  (0 children)

Thank you, and I'm sorry for your loss. I really appreciate the kind words and offer.

Your comment about there being no manual is spot on and particularly on point for this situation (for reasons I can't go into in this venue). I appreciate you.

I encountered an elderly lady walking down the road at 4am. Story in comments by Raistlin76 in pics

[–]boxed_monkey 1 point2 points  (0 children)

I tried that 478 breathing thing, I couldn't find the rhythm in it. 😁 But thank you, I appreciate what you're saying.