He says the funniest things...

I'm going to keep this as a running log of his funnies...

(I get off the phone with his doctors office..')
'Some of these people probably hope that I die
'Why did you think that?'
'They would have less paperwork.'
_______________
"For dinner, I think I want an egg sandwich."
"I was going to make asparagus and shrimp for dinner. Do you want that or an egg sandwich?"
"Egg sandwich... we can have asparagus and shrimp anytime."
_______________

"I can't get over how dark it is at 10:30."
"Why is it weird that it is dark at 10:30 at night?"
"It's night?  I thought it was day."
_______________

Bad News/Good News

We went to the Neurologist this week to get filled in on the results of all the testing he has been undergoing. 

The Bad News is that in addition to the bvFTD, he also has ALS

The Good News is that, in addition to the bvFTD, he also has ALS

It is absolutely heartbreaking to hear that a loved on has ALS.  But when you have already been dealing with the news that this loved on has Frontal Lobe Dementia, that there is ABSOLUTELY nothing that can be done to make this better and that someone with bvFTD will eventually show the effect of a motor neuron disorder or MND (of which ALS is one), putting those three letters to it... giving it another name... it really doesn't hold the same punch as it might for someone hearing the standalone diagnosis of ALS.  Basically, it would have broken my heart to hear that diagnosis.... if my heart wasn't already broken by having heard all the OTHER diagnoses.

There is a silver-lining in this for our family.  While my father is a veteran but FTD is not covered as a service related issue.  This means that with FTD, if he ever needed to go into a facility, it would not be completely covered.  For example, the local Veterans Home costs $8000 a month for non-service related issues.  The diagnosis of ALS is a game changer.  ALS is considered a service related issue and will be covered completely.  It is also considered a fast track condition.  As to what those two things actually mean, I am not sure yet... learning as I go. 

Cycles

The new 'real' seems to be all about cycles. He cycles through not sleeping, sometimes for days, which causes a worsening of his symptoms.  He has more delusions, a harder time understanding what people are saying, a harder time keeping track of time and space.   In this phase of the cycle, we can expect a reversion to old conversations, especially ones regarding old obsessions.

"I need to go to the bank."

"Ok... how much do you need to take out."

"$300"

"For what?'

"To get new tires."

"But you just got new tires 6 months ago and they only have 30k miles on them [the tires in question are 85k tires."

"I know."

"So why do you need new tires?"

"I just do."

This particular conversation happens about every 2 weeks.  Additionally, every time we get into the car when he is in this phase, he says we need to go to Brownsville [30 miles away] for gas, no matter how much gas we actually have. When asked why, he says it is cheaper there, even though we have shown him it is more expensive there.  There are several of these 'subroutine' type obsessions that he pulls out when he is tired.

Once he reaches a certain point of exhaustion, he will sleep for an extended amount of time and there is NO keeping him awake.  I have found that it actually makes it all worse, so I tend to let him do it, even if he is sleeping around the clock.

Once he is rested, he is more alert, understands what is going on better, is able to follow new things like the pool exercise class instructions.  He is able to participate in various activities but still only with a lot of supervision and assistance. I made the mistake of thinking that because he was in one of his 'aware' phases, it would be no problem for him to use the riding mower. This was a mistake in judgement on my part.  He did a bit of damage because he could not figure out the brake and acceleration.  Could not remember how to engage the blades or to get in and out of reverse. It took several rounds of explanations before he could get it going safely but even then he was unable to judge distance to objects and several times ran over things that he shouldn't.  I did notice that towards the end of the 20 minutes of mowing he was a little more alert and 'with it'.  I'm going to explore that aspect as I have noticed the phenomenon more than once... the more active he is, the easier it seems for him.  The downside to that is that every time we have an action packed day, the next day, he is worse.  It is almost like it takes some time to get his brain revving, but once it is, it can't stop and gets overwhelmed.  I think this is going to be a hard balance to find and maintain, if we are able to at all.