It doesn't matter

Living with dementia really depends on your point of view. From my point of view, living with my Dad who has dementia means a lot of things.  Mainly, it means learning a mantra:

It doesn't matter

It is hard.  It doesn't matter.
It is probably one of the hardest things I have had to learn.   It doesn't matter.
A lifetime of habit to break.   It doesn't matter.

My dad has dementia.  For him, this means he literally is loosing him mind.  It means he is confusing, conflating, confabulating. 

It doesn't matter.

It means that he remembers that he dropped out of school at the 9th grade because he got caught by his dad opening Grandpa's wine and Grandpa took him down to join the Navy.  It doesn't matter that these things happened several years apart.  To him, this was reality.  Of course my initial urge is to correct him... because that's what we do, right?  But... It doesn't matter.  

It happened over 60 years ago... no one will be harmed in the miss-telling of this story.  It doesn't matter.

He tells my sister that we took a trip and got just about every detail of the trip incorrect.  It doesn't matter.  The purpose of the trip was to get him out of the house and have a nice day.  I am a little sad that he suffered confusion on the trip due to his faulty memory and my initial urge is to correct him to make him try to feel better, but in fact, it most likely won't make him feel better and there is no reason to make that confusion worse by pointing out that his reality ... well... isn't.  It doesn't matter.

It is really hard not to correct even the smallest thing.  Sometimes, it just comes out of my mouth before I realize what I am saying. Another hard thing to learn is to not beat myself up over it when I forget.

The goal is to make him comfortable by reducing his levels of confusion.  One of the main ways to do that is to simply not try to change or challenge his 'reality'.  Because, really... in the scheme of things... It doesn't matter.

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. 

The Reveal...

A few months ago, my dad began showing signs of some erratic behavior.  It wasn't anything drastic... his insomnia was worse and it seemed like that caused some worsening confusion. All of his behaviors could be explained away:

His doctor said that the insomnia was not abnormal in people his age... as we age, we need less sleep.

He had 2 shoulder replacements... of course he was not as tired since he was not able to be as active as he had been before.  It would be better once he was completely healed up and could get back to normal levels of activity.

He didn't want to spend time at family gatherings... we assumed it was because his hearing aids made it hard to hear in a group.  Or maybe his depression was acting up... but he doesn't want to take meds and otherwise seems ok.... lets respect his privacy and wishes.

He says borderline inappropriate things ... but then he has always been a little off... he must just be getting more and more set in his ways as he gets older.  

We tell him over and over again that it is not ok in today's society to walk up to a strangers kid and touch their cheek... WE know there is nothing 'off' in his intent... he grew up in a different time and just likes little kids in a non-creepy way and doesn't get that times have changed.

 He wasn't exhibiting signs of Alzheimer-like behavior... his memory was just fine.  We were on the lookout for that, due to family history.  What we DIDN'T know was there is a different type of dementia... one where memory isn't the primary issue.  Everything else is.

FTD - Frontotemporal Dementia  aka Frontal Lobe Dementia aka Picks Disease aka 10-other-names.

This disease is where the metabolic activity of the front and side portions of the brain (among others) slows and stops.  The cells of the brain die off and the brain actually shrinks.  These portions of the brain do many things... higher executive functions and language are two of them.  

The disease tends to take one of three paths... Behavioral, Language and Movement... but these 3 paths will usually converge as the disease progresses.

In the Language Variant, people will lose their ability to speak and use language.

The Movement variant is familiar to some... it is known as ALS

My dad is experiencing the behavioral variant which means he is losing his executive functions.  From Wikipedia:

Executive functions (collectively referred to as executive function and cognitive control) are a set of cognitive processes that are necessary for the cognitive control of behavior: selecting and successfully monitoring behaviors that facilitate the attainment of chosen goals. Executive functions include basic cognitive processes such as attentional control, cognitive inhibition, inhibitory control, working memory, and cognitive flexibility. Higher order executive functions require the simultaneous use of multiple basic executive functions and include planning and fluid intelligence (i.e., reasoning and problem solving).^[1][2][3]

https://en.wikipedia.org/wiki/Executive_functions

Basically, this means he is losing his ability to reason, all impulse control, social filters, interest in hobbies, interest in family.  He is highly repetitive and obsessive.  In short... he needs 24 hour supervision.

So this is where is stands.... in future posts, I will be documenting the path we travel in handling this.  I am hoping that others on this path will comment with their stories and strategies in coping and dealing with this.  

The first step for a child of a parent in this situation is to realize that there really is something wrong with our parents. With the absence of obvious memory issues, it is easy to push aside our concerns and to rationalize away the issue.  Believe me... I know.  Looking back (thank you, hindsight), we think a lot of these symptoms have been going on for up to a decade.  FTD is a disease that usually start early in the 40-60 age range, but can be found earlier and later.  Early signs are usually misdiagnosed as depression, mid-life crisis, alcoholism (when in fact the disease itself CAUSES excessive drinking).  

The second step is to get involved... I have become a helicopter daughter... I started insinuating myself into his medical appointments.  he fact that he was so 'okay' with me doing that was a warning sign all in itself.

After that, it is all about the diagnosis... and you might have to push to get this done in a timely manner.  In a future post, I will be listing the steps that we took to get to a diagnosis.