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! 

Our Alzheimer's Journey ~ 3/5/17

Jordan continues to have good days and not so good days. --Actually, it's good moments and not good moments. One of the things that we need to figure out is his depression. This is so hard for him. I think it's clinical depression. And it seems to be an experience/feeling that perplexes him. I think that the sheer heaviness or illogical moments that the sadness overtakes him confuses him.

He does really enjoy time spent with people. Time with others seems to really distract him from his sadness.

We did the testing for seizures, which was inconclusive because they were unable to induce a seizure while he was there. --We also saw the neurologist this week (separate appointments). He said it is very common for the testing to give "false negatives". He said the only time the test is conclusive is when a seizure is measured. Seizures are random and often don't happen during these tests. The neurologist said that he is not ruling out seizures as a diagnosis for his episodes. If the episodes are seizures they are not "typical" but there are two things that make him think they are seizures: 1. The phantom smell he experiences as the episode begins and 2. The confusion/disorientation that happens afterward. 

So, all that said, we are treating him for seizures. The doctor put him on seizure medicine that we will ratchet up over the next four months.  And we took him off of Aricept/Donepezil. The Neurologist agreed that we haven't seen improvement with the med...so there's no reason to continue with it. And it is possible that it is causing some of the emotional problems he's experiencing. 

When we were at the neurologist Jordan said he feels depression every single day. I think this is where I need to turn my attention. 

I'm not sure how to describe his cognitive changes. This is probably more noticeable than memory impairment. Though the memory impairs a lot of his activities. An example is if he says "I need my glasses to read this label", he walks to his desk and if he doesn't see the glasses, he opens the drawer and stares. Finally, he says "what am I looking for again?" 

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

1. I hired someone to come over and hang all of our pictures and some additional mirrors to help brighten the apartment. Jordan is very visual and aesthetics are very important to him. Just making the apartment pretty and homey gives him moments of happiness several times a day. My goal is to give him more happy moments and hopefully make the moments last longer and longer.

2. I will be contacting another of his Drs. to begin serious medical help for the depression. I feel this is critically important and time-sensitive. I discussed this with his neurologist and he said he is clearing Jordan for his other Doctors to aggressively use meds to help with depression.  --Before the testing, Drs. were unwilling to risk affecting upcoming brain tests. The neurologist said there is no longer reason to wait.

3. Jordan's companion started on Friday. This is a home health care person. The care plan is that every day the caregiver comes they will go on some sort of field trip. It can be sitting outside at Starbucks or going to museums or movies or the dog park. The list is fairly endless. On Friday they went to the art museum. They have an Ansel Adams exhibit. This was a good day for Jordan.

4. Rachel was adopted by a good friend of mine (Barbara) that lives in town. Today she brought Rachel to our house for a visit. We went to the apartment dog park so we could show Barbara Rachel's agility abilities with the agility course. Jordan and Jacob came to the park with us. Rachel knew Jordan and immediately went to him and leaned on him. It was special for Jordan to get to have this connection. 

I'm still trying to juggle keeping up at work. I end up needing to work late to get my work done (because of the days off I have to take for doctors visits). I have to figure out a way to eliminate the late nights. He is experiencing some of the sundowning symptoms that occur when evening comes. He is not wandering away, but he is anxious if he doesn't know where I am...which, he doesn't remember where I am all the time. When I call him during the day to check on him, he is so happy to talk to me...And he always says "where ARE you?" I'm hoping that increased activities will help.

This is all I really have for this update. Thank you all for what you do to reach out to Jordan (and me).