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.