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 of 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 were 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 jargon...

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 says, Yes, that was to replace a broken headlight and to get the annual car inspection.  --Ooops.  

Anyhoo...car 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, who 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 exercises...to 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.

Racheal's Day Out

Today, Jordan, Racheal and I went to our first "Social Outings" training. I'm always a little anxious when I try something new, but this was a really rewarding experience.

Racheal has been a challenge. This class (along with classes we've had with other trainers) reminds us that Racheal is full of potential. I tell her that at least once a day.  

Our Alzheimer's Journey ~ 1/19/17

Jordan's condition definitely has ups and downs.  We've had another difficult week. Jordan had another dizzy episode and confusion on Wednesday. It was bad enough that I left work to go get him. I took him to the emergency room...I didn't know what else to do.  

I had thought his "episodes" were over. But, like I said, they are back. After the episodes, he feels hopeless and is seriously depressed. His deep depression confuses him. They did a CAT scan in the emergency room which revealed "significant" atrophy. The emergency room Dr. said it looks like his disease is progressing super fast which is probably what is causing the episodes of confusion and depression. He did not think he had experienced a seizure. The Dr. said that because the brain seems to be changing more rapidly than "normal" Alzheimer's that there are going to be bursts of distress.  --This is his opinion based on an isolated assessment. The Dr. required follow-up was to visit with Primary Care Dr. within 24 hours and visit with Neurologist within 48 hours.

Well, we were able to see his primary Dr. She is super helpful. She is not ready to rule out "seizures" as a possible diagnosis. He is scheduled for seizure testing on Feb. 27th. This was scheduled when we met with his new neurologist. After the emergency room, I tried to get in with the neurologist. --The soonest we can get in is 3/2. --And that is with me explaining this is follow up for an emergency room visit.  

I sent an email to his neurologist asking for an evaluation of his meds and begged his consideration ASAP. I think we need to take him off Donepezil. These dizzy and nausea AND depression issues are known side effects to this med. They are not "typical" side effects...but nothing Jordan is experiencing with this illness is "typical".

His depression is significant. Danielle came for a visit this weekend. His depression abates when someone is here to "play" and distract him. But as soon as she left, he was depressed again. None of his Drs. will consider new meds for depression until the seizure testing is complete. 

The emergency room Dr. said to "supervise Jordan closely". I may have the wording wrong. --But I took that to mean don't leave him alone. I have been with him since Wednesday.  Tasks are becoming more difficult for Jordan. 

Things I've done/put into place to manage/cope:

1. I hired a "personal assistant" for three hours a week. She has come twice. She is fully aware of Jordan's condition. She helps me with light work around the apartment (including laundry). Jordan no longer seems to be able to do some of the activities that he used to do (including laundry). She also runs errands for me. One of the benefits of having her is that during the time she is here Jordan gets to have interaction.  --He tells me he is incredibly lonely.

2. I have interviewed for Home Health Care to start ASAP three days a week. We've had the nurse intake. I've designed a care plan that includes lots of outdoor and out of the house interactions. Jordan goes back and forth on how he feels about this. Sometimes is "somewhat" excited" and other times he feels that I'm treating him like a "baby" or something. 

3. We made the difficult decision to give up the Service Dog Racheal. Long story short...I was scammed. It was an expensive scam. I'm heartbroken. I may be able to give more details on Racheal another time. It's too much this time.

A Few Happy Thoughts

I watched the Golden Globes last night and was surprised by how emotional I got in some places. Like, Ryan Gosling sending his love out to Eva and dedicating his award to her brother. The sweetness of it touched me.

And Meryl Streep's speech was excellent. 

In other news, Racheal got a new toy that she has completely annihilated. She's quite proud.

It's been so cold that Jacob got to wear his new sweater.

Speaking of sweet Jacob...he is going to be the next one to get some intense re-training. He's having possessive issues. It's hard being the only dog for 8 years and then having a giant sister come into your life.

These are a few happy thoughts to get us started in the new year.

The Year that WAS

I want to come up with my new (2017) New Year's word. But I haven't. I want to write down my intentions for the new year...but I'm blocked. I thought I would get inspiration from looking back at the 2016 New Year. You know I like to do a "recap" on a postcard of some of the best moments each year. {See:  New Year's Eve 2015}

Let’s just say 2016 was no 2015.

Here's what I wrote about 2015:

So, what about 2016? I started out the year with good intentions. You know what they say about good intentions...they make an a$$ out of you and me. Oh, did I mix my metaphors? Well, you know what I mean.

In January I treated myself to a month of private sessions with the perfect Yogi. She was exactly who I needed to help me. 

I still went to my yoga studio regularly, minus one day a week. 

The private yoga was good for me to step out of my comfort zone. You know, the whole point is for the teacher to give feedback and help you into the poses for the most benefit and with the least chance of injury. But that means I actually had to be vulnerable enough to be seen. That may sound like nothing, but it is NOT nothing. 

I was also very worried in January. I felt guilty for indulging in private yoga. Money was tight and time was tight. This time I wasn't working or being with my husband.

That may sound very 1950s, but, I knew on some visceral level that my husband was not well. 

I don't want the year to be defined as the year of JM's diagnosis. But, there is no denying that finding out what was wrong and trying to find treatment took up almost all of my conscious moments.

I am not satisfied that I have done enough to get the right treatment. Here we are, seven months later and I'm not settled on the right course of action. 

By July I realized I could not keep up. It has become more important to JM that I am home in the evenings...which means it's more important to me. Confusion and a sad feeling of being lost and alone sets in when the sun goes down. If I'm home before sunset he does not have to experience that feeling. 

We also obtained a service dog. It never ever occurred to me that this would not be the panacea.  The challenges that we have experienced never entered my mind. 

Well...needless to say, there are challenges. 

Even so, there are moments of serendipity and pure happiness.

One of the things I pondered in early 2015 that still make me smile. I call it the INFJ dilemma:

That is so me!  Although, I've been working on it.

Our Alzheimer's Journey

January 14, 2017

Jordan's condition has progressed REALLY fast. There's a huge difference from just a week ago. HIs "episodes" that may be something like epilepsy have intensified. Two nights ago he had them in his sleep. He had no less than 5. He had maybe 4 episodes yesterday and several today. This morning he had lost a huge chunk of time (he feels like he just woke up from amnesia.) He is incredibly sad. 

We had a really good Dr appointment today. He's had like three episodes this afternoon...but nowhere near what he had this morning. 

I realize I'm going to have to do something so that he is not alone when this happens. I may have to take a leave of absence from work. That might be too drastic. I'm the only income. But, I have to do something 

His car is parked at the local shopping center because it wouldn't start earlier this week when he was ready to leave. We went back and it still won't start. Last night I asked Jordan what we should "do about the car". He said SELL IT! As soon as it starts. I actually think that's right too. Safer. But I want to make sure he doesn't feel stranded at home. And of course, he can't organize UBER, etc. 

This morning when I asked him if he remembered that he wanted to sell the car, he panicked and said No. He did not remember and then it brought all sorts of emotions about losing his mind. He was inconsolable. Sobbing. Heartbreaking. 

The Dr. today has two additional neurology specialists he wants us to see.  

If Jordan has another episode like today...I'm thinking of going to the emergency room. 

I am incredibly overwhelmed and scared and sad too.