Patient Beware!

I was going to write this when I was still angry. Angry isn't the right word. Maybe the correct word is incredulous. 

I'm sure my story is not unique, which makes me even sadder.

As you know, my husband has multiple health conditions that require seeing several doctors somewhat frequently. He sees an endocrinologist for diabetes, a neurologist for seizures and Alzheimer's, and a Primary Care Doctor. 

Our Alzheimer's Journey ~ 3/18/17

This was a hard week. You may remember he said "no" to the care companion. He said he liked his independence doing his own thing...

Jordan called me from the Brier Creek shopping center and said he couldn't figure out where he was or what he is supposed to be doing. I went to pick him up. He didn't remember where the car was (that is understandable), but he forgot that Jacob was in the car. We had help finding the car and poor Jacob.  

The next day Jordan was confused again. He thought he had been in an accident. Both Wednesday and Tuesday he didn't know who he was. I asked if he knew who I was and he said yes, you're my Kimberly. So I told him anytime he is confused to say: I'm Kimberly's husband. I hope that helps ground him. 

I stayed home for the rest of the week. As I spent time with Jordan he was able to tell some of the scary things that he experiences. He has gotten lost several times (I didn't know). What happens is he's somewhere familiar and all of a sudden nothing looks familiar. 

Also,  he is having visual "hallucinations".  He said he will look at a spoon (for instance) and all of a sudden it becomes moving black dots and changes shape, etc.

The worst is that he has been having moments where he relives moments from childhood and they scare the shit out of him. It's like he has repressed so many unhappy memories so long that they come flooding back and he can't keep them away. An example is he remembers is his father hitting him with a fist on the side of the head and Jordan falling to the ground. I'm not sure what other memories are coming up. 

It is clear that he can no longer be left alone while I work. 

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

1. We sold his car. He was willing. I don't know how this will work next week when he wants to go somewhere. But I had to do it. I needed to minimize the chances of getting severely lost. 

2. Someone I've been working with has stepped in and increased their hours to help me keep an eye on Jordan. The key here is that they are not here as "Jordan's companion". He likes them. 

3. I am looking at Adult Daycare. 

4. We have a Dr. appt on Wednesday for meds.

Things I've learned:

Hallucinations are not unusual for people with Alzheimer's. This is also true of seizures. The smells that Jordan was having may have been seizures or may have been another type of hallucination. The treatment is the same, which is anti-seizure meds. We have Jordan on anti-seizure meds now.  

I believe Jordan is in stage 5 (probably 5.5) of the 7 stages of Alzheimer's. I'm hopeful that we will be able to get his depression under control AND reduce moments when he is afraid.

Our Alzheimer's Journey ~ 3/12/17

We had a pretty good week. 

Last Friday was the first day of Jordan's companion. They went to the art museum and saw the Ansel Adams show.  He was pretty tired that night but said he enjoyed the Ansel Adams show. 

Monday was day # 2. And Jordan pulled a "no show". He didn't like having a companion and decided that he didn't have to do it. Of course, the Health Aide was alarmed that Jordan wasn't home. When I reached him I said, "why aren't you home?" He agreed to go home for his day. 

Next day Jordan confessed that he doesn't want to have a companion. So, that lasted just 2 days. He said it was too exhausting and that he didn't want to make friends. --I actually get it. He's an introvert and this was just too much for him. 

I have to re-evaluate. 

The bad thing is I really hoped to use the help to get Jordan to some of his more routine appointments. I have already used 10 days PTO this year...and we aren't even through the first quarter. That's not meant to be a complaint...it's just that I have to balance it all.  

That's really all that's new this week. 

Life in the Puget Sound

View of City from the Space Needle's Observation Deck

I love that we lived in the Puget Sound area, the Seattle area. It is one of the coolest places I've ever been. Truth be told, I sort of miss it. The area is green all year long, hence the "Emerald City" moniker. I'll never forget the first time I saw Seattle. It was breathtaking. (Please know I'm not trying to sound cliché.)

I realize now that I really can't describe it in a meaningful way. I'll just say, a huge lake surrounded in the distance by mountains and in the foreground are evergreen trees. In one glance you can see some of the best in nature.

It's Just Part of the Story

I've missed coming here to tell my little stories. I know there haven't been real stories in a while. But, I miss coming in to chat.

I may have mentioned that my husband has Alzheimer's. It is early onset...it's rare that someone his age would have Alzheimer's.  In a word, it's been overwhelming. This blog is not about to become totally devoted to Alzheimer's or living with Alzheimer's and I do not intend for this blog to become an advocacy platform. This is simply my place to tell my stories in cyberspace.

Here's the thing...my stories include Alzheimer's and loving my husband who is living with it.

My husband used to be my most regular blog reader. I never wanted to put anything here that could hurt him in any way. This blog is no longer a thing he remembers, so I'm stepping out to talk just a little.

My thought is that if I talk about where we are in this condition that the fact that we are living with this condition will be just one thing about me and my life. You know? Like I'm right-handed, don't have a sense of smell and need reading glasses. Some things, of course, take up more space in your life.

We got the formal diagnosis almost a year ago. I've known something was really wrong since 18 months ago. I noticed little things over the last several years, but the things I noticed were intermittent.

On a totally different note, Jordan and I are watching the very first episode of The Big Bang Theory. It was funny from day one!