Tuesday, August 29, 2017

Our Alzheimer's Journey ~ 4/23/2016

We have a preliminary diagnosis to be confirmed by the neurologist. The diagnosis is dementia and specifically, Alzheimer's. We were there from 8:30 until 2:30. The testing was very thorough.  At the end of the testing (and after a lunch break for all of us) the doctor discussed her findings and diagnosis. She was very gentle and checked in with Jordan several times to see how he was taking it. It's a hard diagnosis to hear.

Part of that meeting included hearing some next steps. She recommends we get in place a Power of Attorney, including a Medical Power of Attorney. She expressed that this is pretty urgent.   

She also wanted to discuss his driving. She was not convinced he should be driving. I'm okay with his driving down to Brier Creek and back. I think he's safe. And I think his getting out of the house is important.

She also wanted to talk about "additional support". 

Jordan said he found the diagnosis scary because he saw how affected Peggy was/is. I told him that there are a lot of differences to their situations. Peggy was alone with no one there to become aware of the changes or help with her meds until they were quite serious. He has me...and I've taken over making sure he gets his meds....and gets to his appointments. 

It was emotional for us both. But...when we got home...after we spent lunch together and going to the hospital gift shop and navigating this part of town neither of us know..in the rain. After all of that, when we got home Jordan hugged me and kissed me and said "good day". 

He definitely remembers the diagnosis. 
We were both exhausted emotionally and physically. I'm definitely still processing. The doctor was quite clear that plans need to be put in place "in case" of progression. 

She felt that many of the things we already do are appropriate.  --Jordan currently takes care of the apartment and laundry and that kind of thing. It's not a little thing. 

She really wants us to think about how to make sure he can stay social and engaged with the world....especially if / when driving no longer becomes an option. 

It's a lot. On the one hand, I don't know how to do any of this...but will figure it out as we go along. 

I'd rather us not talk about some of this in front of Jordan.  --He's been good about bringing different aspects up that he wants to discuss. As I said, he remembers the diagnosis. Last night as we were talking about nothing, he said, "I don't know if this is because of the Alzheimer's, but I have this strong desire to purge". He said by purging our "extra" stuff he will have feelings of serenity at home as well as have fewer things to keep track of...or wonder "where is that...." My point is that he said it almost like "I don't know if it's the sinus infection or..."  We both knew it was dementia. So, now we continue to define our new normal. 

I'm not sure about talking logistics of next steps in front of him. I am fine with giving him the opportunity to talk about his illness....as much as he wants. If he wants to talk about it, I think it is healthy. You know, acknowledging something makes it a little less scary. 

This is a lot.... I know.

We have the final neurologist appointment in two weeks. That is when the doctor will have this doctor's report along with comparing old MRIs with the new one...etc.

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