"What happens when I can't do anything anymore?"

Some weeks have a few hard moments. Some weeks, like this one, have a few happy ones. I am told I need to have a better sense of humor on this blog, so I'm going to try, but some weeks, well, just aren't funny. They are poignant, they are memorable, they have love and caring and meaning. But funny they are not. And they are especially not funny when every person in this house is a hormonal mess! (I really never thought I would be okay with an adult child wanting to be gone with a boyfriend, but at this point I might even pay for that to happen. Oh wait- I did pay. Sushi and Trader Joe's to go in exchange for three days of peace and quiet. Not a bad trade is it? If you have adult teens you know what I am talking about. Admit it.)

Right now Casper is dozing in her fitful Casper way. It's close to bedtime and she hasn't really been up all day. Or yesterday. Saturday we got out for a few hours, but that wore her out. It's been maybe five days since she was really up. As awful as that sounds I am okay with that, because we have hardwood floors and she is still recovering from her concussion. I am still price shopping for fall mats, because my insurance will not cover fall prevention items- just the ER visits, after deductible and co-pay, for falls. I am trying to understand the stupidity of that. The best part is that if she were on hospice care fall mats would be covered if she were terminally ill, but as a person still expected to live she cannot have those items covered. Even Anthem Blue Cross could not explain their reasoning on that.

So today I got home and Casper was confused. Confused enough to actually admit it and tell me about it. Yesterday was quiet moodiness, which always means, as I have learned in dementia land, that she is struggling with delusions that trouble her and she's not willing to share. Last weekend she was really moody, and said he dad had been visiting (in her dreams and waking moments) and saying mean things to her about being a lesbian. I know the family has told me he worked his way past that before he died, and loved her previous partner. Unfortunately, in dementia land, which is like the Rabbit Hole gone bad, the bad memories seem to bubble way before the good ones. So Casper could remember  a feeling of total abandonment by her family and rejection by her dad. Lucky for me, I have her sister Sandy. Three texts later I untangled the story- when Casper came out her dad packed up the whole family and moved them to Kansas to get them away from her. Ultimately, her mom made her dad bring them home, and they were reconciled for the rest of their lives. That part was missing in the memories.

When I got home she was quiet, and she looked at me and asked "Is there some place I supposed to go during the day?" What? "I think I go somewhere during the day. Where do I need to go?" Umm... Refer to Rule #1- never argue with dementia thoughts. "You used to go to work. Now you are home." "I think I need to go somewhere and clean and help someone." "you used to do that. Before you were a nurse. You gave baths. You help here. You help my mom. Is it that?"

Perplexing silence.....

"No. I can't tell. It's just me. I think I need to go."

More silence....

"What happens when I am useless? When all I do is sit? Or sleep? Or I'm bedbound?"

The reality is all of that is coming. It's lousy. And Casper has no way out of

it.

"Why are you asking? We are planning our wedding. Remember?"

Finally- a smile.

"Do you remember the flower girl dresses?" 

"Yes- they are so cute!"

"Do you think I would ever marry someone and then abandon them? Don't you remember Linda?"

"Linda was different. You guys had all those years. She wasn't going to lose her mind."

"I loved her. I love you. Is there a difference?"

This is preparing for the worst in dementia land. The place where you have to acknowledge that there is worse coming. That at some point in time Casper really won't know me. That she'll live in her memories. That she'll eventually stop communicating. We both know it. We've both seen it. This is the time to get some new thoughts into her head to comfort her at those times.

"I will never leave you. I will never place you. I will keep you home. I promise."

Hand holding goes a long way in communicating. Tonight it said everything. There were tremors. She could not lift herself off the bed without help. She choked when taking her meds. But we held on tight.

That's what you do when battling this critter called Parkinson's (soon to be diagnosed as Lewy Body Dementia)- you hold on tight.