Day after Day ...

Update …(I’m going to shoot for at least weekly updates ! But I also want to branch out and write about other stuff more to! For those of you that only follow for mom – I’m sorry!

So I’ve been silent for a few weeks. I have had every intention of writing more, staying more up to date, and being more intentional with my blogging, but … ya know?!

But I’m here. Still alive. Still kicking along.

Where to start as far as updates go… Well I did get a new job. I described it to someone the other day that it feels like coming home. This is definitely the field that I am called to work in. This is what I am supposed to be doing and so I’m really excited about that.

I’m out of the house. I think that spending all day 24/7 in that room in the house was really starting to wear on me. I enjoy people. I enjoy interacting. I enjoy being out in the sunshine, so needless to say so far this has been an excellent change!

The only downside to this change is that I’m not home with mom during the day. Actually right now I’m mainly training out of Hobart and Clinton, so I’m not even close when she needs me, but that’s just temporary. Typically my home office will be in Altus.

Dad is able to spend a lot of time either at home or checking in with her so for now we are all comfortable with this arrangement. Although we do all acknowledge that there will come a day, when she can’t be alone …

Let’s see her and Dad went to a doctor’s appointment last Friday. We originally had one scheduled the Friday before but it was cancelled due to weather, and then I wasn’t able to go when it was rescheduled. That’s frustrating in and off itself because I like (and dad says need) to be at the doctor’s appointments.

I don’t have much of an update other than the doctor and I have talked twice this week. I’m still not thrilled, but will probably be talking with him again tomorrow. I need to first say this, we LOVE our doctor. Out of 5 appointments, one negative one isn’t really so bad. Also who else can say their doctor calls and talks to them on the phone for 30 minutes at a time? I know, it’s unheard of and I’m so grateful for him. I’m just confused on some things he is doing and saying and I’m advocating for some clarity. I’m sure it is completely annoying to him, but at the end of the day, she is my mom and I am willing to annoy any and every one if it means prolonging any good days!

I’ll keep you guys updated. I promise. For now just know this disease is moving a heck of a lot faster than anyone was prepared for and we ALL hate it!

Which leads me right into something we can all do about it! I am doing the Walk to End Alzheimer’s in September. I’m already almost half way my goal! I’ve even had 5 people join my team! I’m going to write a longer post on that soon (like maybe tonight) but if you are interested at all, the information is right here just click!! This is one way we can and WILL make a difference!!

Love you all and appreciate your support more than you probably know.

For the Love  

I tell you guys I try to keep it honest here. I try to be upfront about the things I’m dealing/feeling. I have to tell you that before I left for my mini vacation training in OKC last week I was struggling. I mean bad. I was seriously thinking about asking Chris to commit me. Who am I kidding, I was begging him to commit me and he wouldn’t! Jerk!

I was angry, really dealing with the ugly side of depression and just really done!

It’s amazing what some alone time and sunshine can do for a girl. I had a whole week in a hotel alone. I spent lots of time reading and just kind of doing what I wanted. I got off early one afternoon and had a spa afternoon which was awesome! I even went to a movie by myself and ate pancakes while it was snowing outside. It was just really good for me.  

There are always going to be things that I struggle with and things that are hard about this disease. It is a horrible and stupid disease, but I keep telling myself I have to make more of an effort to enjoy the good things! I think being out of the house more is actually going to help because it makes me feel better and more relaxed. So I think it will be good!

I don’t know if you all know who Terry Pratchett is, I didn’t before this week. He is a fantasy author who was diagnosed with the same type of Dementia as mom. It’s called Posterior Cortical Atrophy (PCA) in case you can’t remember all this names!

He died this week. He was diagnosed in 2007 with PAC and early onset. That’s not even 10 years. I know and understand that every person is different. I understand that each person reacts to this disease differently… but I do know this news stopped me in my tracks.

I was searching the internet for more information and found a fundraising page set up by his family. I was reading through it when I saw a definition for Posterior Cortical Atrophy. Posterior cortical atrophy (PCA) is a progressive degenerative condition involving the loss and dysfunction of brain cells, particularly at the back (posterior) of the brain. A progressive degenerative condition…I know this. It’s not like this is the first time I’ve heard this. But maybe it’s the first time I’ve read this since I’ve found myself living out what that really looks like.

Progressive Degeneration…

One of the major things we are dealing with now is the rapid loss of eye sight. Don’t get me wrong, mom can still see. It’s just getting more difficult. And I just hate it. Reading used to be one of her favorite past times. I’ve got the font as high as it will go on her Kindle (like we are talking 1 -2 words per page sometimes …) and it’s still a struggle for her to read it. I’m trying to get her interested in Audible books – but that’s tough!

She loves watching TV, but struggles to follow her shows. I’m getting more patient repeating every major plot twist, but I know it’s got to be so frustrating for her.

I need to find some things for her to do (BESIDES reorganizing!!). I’ll take any and all suggestions! J

The weight is still an issue, but we are slowly gaining it seems, so that is good! What I wouldn’t give to be on that side of the battle! But that just reminds me yet again that we are all battling something!

Anyhow, I’ve rambled on enough…

I’ll be writing more soon … that’s my plan anyways!