Documenting Our Alzheimer's Journey

I know I promised that this blog will not become devoted to Alzheimer's. And I still promise. But...it has been almost all-consuming for me to navigate this condition. This space is where I share my stories and this is Part of the Story. 

I've shared some of the bone-crushing sadness that has sometimes overtaken me. I'm thinking many of the AZ posts downplay the sadness. 

It's important to me that I don't sugar coat what we are going through. 

Nesting...Again

With this move to Wilmington, we downsized...again. I know I talked about the last two moves...one as recently as November. I've mentioned that we downsized when we lived in Bellevue/Seattle. I loved that. I was surprised by how many endorphins I got from lightening our load. The Bellevue apartment had just 736 square feet. I thought of that small size as a badge of honor. 

When we downsized in NC, I earned another badge of honor. We went from living in a house to 853 square feet. --Granted, not as small as Bellevue. But, the new proud achievement is that this was the first time we downsized without any of our things stored in a utility room or storage unit. In the cross country move in 2010, we ruthlessly let go of our possessions in storage. Our thinking...do we love "this" (whatever the "this" was) enough to pay for it to move cross country with us. Keeping in mind that moving costs are affected by how much space we take up in the truck (movers) and what the weight of our stuff is.

When we got to the NC house we basically did not furnish several rooms in the house. In that time we enjoyed another aspect of fewer possessions. We got to live with a lot of "blank spaces". I'm not sure how to explain this...but seeing a room with clear surfaces provides a sense of calm.

So, when we moved to 835 square feet, it wasn't as difficult. We did give a few additional things up, but the big win was that we were not paying rent for our possessions to be in storage. YAY!

Long story, shorter...I've not regretted any of my downsizing experiences.

With this move, I had to really work on lightening our load even more. This time we are living in 667 square feet. The kitchen/dining table had to go as well as Jordan's desk. When I measured our living room furniture, I realized that it would not fit in the new space. The living room space is too small for the couch and chair we had.

On moving day, our new living room included two side chairs one side table and a footstool. Of course, we also have the credenza for the TV.  --But sitting wise, we had very little.

Our Alzheimer's Journey ~ 8/17/17

Here is an update from his most recent Dr. appointments. His AZ Psych was hard for both Jordan and me. Jordan does not do well in his Dr. appointments. It's weird...he can be "normal" with me before the appointment. But once we get into the Dr. Office he goes to his "other place". Stress? Is it because we are talking about his condition? I don't know. He did fairly well with his Primary Care Dr. 

But his AZ Psych was not great. When she talked directly to Jordan he mostly spoke gibberish. I don't know if any of you have experienced this. His "gibberish" is real words...but they don't make sense and they don't have context.

More Updating

It feels just yesterday I was giving a "little update".... (I kid). It feels like maybe a year ago. 

I made some super hard decisions to handle our new normal. In April Jordan's doctor was very clear that Jordan now required 24 / 7 care. My piecing together care with gaps between the caregiver leaving and my getting home was no longer going to work. Immediately I had to change my work schedule to manage the previous gaps in care. It was a tough balance. My employer was so understanding. They agreed to work with me in any way I needed. So I decided to take a leave of absence.

At some point during the leave of absence, it became clear that I wouldn't be able to go back to work. 

I am now Jordan's full-time caretaker. 

It has been one of the scariest decisions I've made. Leaving my job that I loved was hard. Making finances work is a different kind of balancing act. 

The second big change was made in tandem with leaving my job. We relocated to Wilmington. 

Our daughter is here. Plus, it is a small beach town which gives us new things to appreciate. The slower pace is palpable. There have been challenging days that I do not feel equipped for. I'm definitely not trained for it. 

There are not all rosy days...but there are still good days. Still days with no bad spells, still days when we are silly with lots of laughter. 

Our Alzheimer's Journey ~ 7/26/17

Overall we've had several REALLY good days.  We continue to be seizure free.  The potential side effects of the antipsychotic Rx appear to have subsided. His diabetes is under control. His insulin has been reduced to 10 units (from 42 units a year ago).

He still has bouts of sadness...but it doesn't appear to be as often as before. 

When he does go into his "I'm not here" zone he is more and more difficult to manage. The good news is that it doesn't happen that often.