Sunday, September 3, 2017

Our Alzheimer's Journey ~ 1/24/2017

January 24, 2017

My Brother-in-Law and his wife as well as my Sister-in-Law gave me support last week. It helped me as I try to navigate so much. 

Some additional background. After Friday (the 13th), Jordan had intermittent memory lapses...but none that appeared to devastate him. Examples of memory lapses are:  "Where is Danielle again?" or "I haven't seen (fill in the blank) in over a year. (but it was a month ago...)

He became quite sad when he thought he hadn't seen one his siblings (or Danielle) in "forever". He had this feeling that he was "failing at relationships". --I think that is a result of a sense of time. Time is an interesting thing with this condition.  

I stayed home with Jordan on Monday, Tuesday & Wednesday. I went to work on Thursday & Friday. --His sister came to visit on Friday!

We have a new neurologist appointment this Friday. This one specializes in seizures. --It is not who I wanted, but Duke is incredibly hard to navigate.  Jordan has not had a seizure since a week ago (Tuesday). I'm not sure if I mentioned, but one of the things that could have contributed to the seizures was one of his medications. He's been on it about 18 months. Anyway, the Dr. took him off that med on 1/13/17. --Cold turkey. I'm sure the whole cold turkey off a medicine contributed to some of his overall unhappiness.

Oh, yeah, we had to deal with a broken car...that was parked in a shopping center for several days!! (They don't like that.) The first day of trying to take care of it (in sort of a misty rain) we called Road Side Assistance. They sent out a battery guy. --Even though I told them it didn't seem like the battery because we could hear the engine try to start. It was like a spark just wasn't catching.

Anyhow, the man that came out was VERY NICE. Trivia: How many people does it take to find either the engine or the battery of a Smart Car? (When we didn't get a manual because we bought it used). ANSWER: THREE!  One of us to find a video on UTube and the other two to do the 'heavy lifting'. Once battery and motor was found and two hoods were opened (front and back), the battery guy hooked up the charger and it confirmed that the battery is FINE.

Next day, we tried again. This time we were clear to the Road Side people that we needed a TOW. I called the dealer that services the car and they were ready for the car to be towed to them. --So, Jordan and I waited for the tow truck at Starbucks. Happy fact, we did not have to go to the dealer with the car. The TOW did it all.

Two days later: diagnosis:  FUEL PUMP (bad)...not sure all of the technical jargin...
Plus some other things were needed (but not as urgently). And, oh by the way, did I realize it had been two years since the car had been serviced (?).  But...we just had it there in November, I say. He say's, Yes, that was to replace a broken headlight and to get the annual car inspection.  --Ooops. is now all repaired. 

Things I've done / put into place to manage/cope:
  1. We went to AT&T (which was a surprisingly good experience) and got new phones. He has a Galaxy Edge and I have a Galaxy (no edge).  --More on that in a minute.
  2. I ordered both of us an Android Wear Smartwatch that is paired with our phones. 
    • The idea is that even if he doesn't hear his phone, the watch will vibrate and alert him to check his phone. 
    • Even more important, I WILL NEVER again (hopefully) miss a call from Jordan. When he has tried to reach me and I missed the call (work) it has caused him undue pain (not sure of my word choice). When he calls, it is often because he's confused and he needs a touchstone. NOW, I should never miss one of these calls.
    • RESULTS:  I've been able to get to all of his calls to me AND to calls being returned from Drs., etc.
  3. Jordan is affected by Seasonal Affective Disorder. In Durham we have had lots of gray sky days which are hard on Jordan. Here's what we've done: 
    • I bought him a pair of "safety glasses" that also reduce glare and gives the impression of more brightness (the glasses block out blue colors of the spectrum). Got those next day from Amazon. He wore them all day for a few days. Now he wears them intermittently.
    • We went shopping at a local store for things to brighten up our home. We bought several bright pillows and a bright rug.
    • I ordered him a Light Therapy Lamp. It is one that has a high success rate in treating SAD. It came yesterday. It has helped.  Though, that is probably an immediate sensory response to additional lighting and maybe warmth. It will take a few days (weeks?) to get the full effect.
  4. We have had several experiences where Jordan has been able to engage with other people, which have really touched him and made him happy. Talking to Jordan's brother and mother  on Saturday was huge.
  5. His sister calling last week and coming to visit last Friday was huge. They went to lunch at a restaurant Jordan hadn't been to .  --He'd been to one of the restaurants in the chain, but going to a new place is good for his engagement to his environment. They went to a MOVIE (need I say more...except..hotdog & popcorn). They topped it off with B&N (i.e. Starbucks coffee & cheesecake). All of his favorite things happened in ONE DAY!
  6. On Thursday (a blue sky day), I called Jordan and asked him to take the dog to the dog park in our complex. He did & spent quite a bit of time in the sun. (yay).
  7. Also on Thursday, I arranged an Uber to take Jordan to the shopping center  for a LATE LUNCH. --He chose another place he (and I) had never been to. --I joined him after work (it was a LATE LUNCH). We had a light dinner and he had a beer.  He enjoyed this place.
  8. Sunday, we had a training session for Racheal.* This is a different type of training. It is called "Social Outings". We show up with our dog and the trainer and several other people with their dogs. The trainer walks us through some leadership prepare the dogs to pay attention when we get to the "main event". The main event was going to a yogurt shop and eating on the patio (with all of our dogs well behaved at our feet). Jordan told me he thought it was fun (so did I). We have three more of these classes.
*Racheal: A story in herself. I spelled her name this way to include the word "heal".

I'm interviewing an agency to help me with the normal things I'm having trouble balancing. --For example: groceries...This may take some of the burden off of me of keeping us fed. There are more things I will likely get their help with. Jordan's desire (ability?) to do some of the home "chores" that he used to be so good at has declined. --I am looking for ways to compensate for that.  That may sound weird that I need this type of help...but, when I'm not at work, I'm trying to get Jordan into a Dr.'s visit OR trying to make sure he is getting what he needs/wants to stay "him". 

Because I have so many weird days away from work...I get behind and have to manage that as well.  --I get PTO, but that doesn't offset the work that I'm still responsible for and the work that I'm evaluated on...WE need me to continue doing well at my job.  --It's all about balance.

As you can probably hear in my tone...both Jordan AND I are feeling much more optimistic this week.

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