Wednesday, August 30, 2017

Our Alzheimer's Journey ~ 5/6/2016

Saw neurologist today. Everything does point to Alzheimer's. He said the only way to know for "sure" is a brain biopsy...which is too life-threatening to do. (Of course). We will be starting new meds tomorrow that should slow the disease. It may even give him a boost. This med is documented to slow the disease by 18 months. That doesn't mean that at the end of 18 months he will drastically decline...but it means that on a scale of 1 - 100 (1=good); If we would be at level 7 in a month or so....he likely won't get to 7 for 18 months. ---That is pretty good really. Since we are starting somewhat should slow everything down. The doctor isn't happy that I'm letting him drive.  --But I insist it is okay for now. 

There is a serious breakthrough medicine that is in FDA testing and expected to be released within the next 12 months. It's an antibiotic that attacks the plaque in the brain (tangles) that cause the illness. That has the chance to seriously slow the disease and may have some reversal effects. --Still doesn't sound like a cure. 

We looked at the most recent MRI and compared it to one in 2007. There is a significant change...but interestingly, the two main places in the brain where he has been affected were already affected in 2007. My poor sweet husband. 

So.. we are both getting used to the "new normal". Here is my biggest relationship challenge...I'm not ever sure if he isn't responding because he doesn't hear me or if it's because of the condition. Seriously. His hearing is getting worse! So I have to repeat.... But also, he asks me to repeat (pretty quickly) when he forgets...For example, I say "your glasses are on the desk"...what? "your glasses are on the desk". ... okay, thanks.... what did you just say? "your glasses are on the desk".

Or I'll say...honey I need you to take your meds (I've pre-measured them). No response... Honey...I need you to take your meds...okay... walks around aimlessly...honey I need you to take your meds "Oh....okay" and takes meds. OR "Alright...I will...I was just doing this first". Or "don't shout". --I promise I'm not shouting. 

But...that is little stuff. I have to make sure we both get enough sleep so that we are less likely to be cranky and frustrated. 

Interestingly, I've been cooking real food and we've been having sit down meals. This seems important to him. 

He is very aware of politics and listens to NPR all day. Every day I come home and he tells me some new antic he's heard about...see new information is getting in.

The doctor said that if I can get him to have 30 min of aerobic exercise a day that will also SIGNIFICANTLY slow the disease. He believes that Jordan's Alzheimer's is primarily vascular...and less hereditary. (Although we won't know until a brain biopsy...which means we won't know). The treatment is the doesn't really matter...except it does help me/us know if some of this is "inevitable" or if there is a REAL fight that we can put up to slow this. It sounds like there is a real reason for us to put up a REAL fight.  The good news is I'm usually good when I have an action plan. We have a gym just across the apartment (other side of the pool). 

Logistics are hard for me. I still have to work. I am late for work almost every day now. --Making sure he's ready and taken his meds as well as me getting ready. --We are not morning people. Jacob has a hot spot infection too. So that meant a vet visit and a warm solution on the spot 2 x a day (morning) plus a pill. So that adds time. My job is great! But, I have to be careful not to let my performance slip (not easy). So sometimes I've been working a little later. --Note: IN 2015 I left the office at 5:00 ALMOST every day.!  In 2016...not so. 

I usually leave by 6:00 and get home by's crap traffic. Now, our routine is I cook when I get home (some call this normal) we sit down at around 7:00 or 7:30 for eating. What that means is I have not been to yoga on a regular basis. --My choices of times are 5:30 and get home at 7:00 (hour class; 30 min commute).  That means leaving my office no later than 4:45. Which means I can not have been late. --I can't be late on the front end and leave early on the back end. The other time a class is offered is at 7:00 and get home at 8:30.  --That won't work for the cooking setup. 

I have got to figure out how to get this priority back on the schedule. 

Oh, I downloaded a tracking app on our phones. I can see his location anytime I want. Yesterday I saw when he was at McDonald's and then saw he was back home. Then saw he went to Wendy's and then back home. --This has brought me so much comfort.

The May holiday is almost here. I have not mentioned travelling to Jordan for this holiday. I know he would absolutely love to go to Asheville for a visit. LOVE!  The truth is...I don't feel I have enough bandwidth. I'm so sorry. I just can't see me feeling up to driving both ways for a 3 day weekend. --I have to drive on actual trips. Plus...I haven't remembered to make boarding arrangements. 

Jordan's world is getting smaller.  Of course, his world tended to be somewhat small because of his introverted nature. But the casual conversation at Duke Gardens...where he would see the same people day after day and they knew HIM and they knew his work. ....That is something that is hard to duplicate. 

Thank you for letting me tell you all of this. Bottom line...we are both very encouraged. --And I'm a little overwhelmed.  --But that won't be forever.   Oh..and one last thing.  My knee is getting worse!  --If it's not one thing it's another.

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