Numb

I’ve realized lately that I’ve just kind of been going through the motions. Honestly, I’ve just been faking it and pretending like I’m making it…but in all of that I’ve realized that I’ve become really numb.

I move through most of my days getting by, not really making any significant memories or impacts … just kind of numb.

I’ve gotten complacent in my numbness.

And honestly, most of you wouldn’t blame me. Most of you would tell me I’m allowed to be numb, I’m allowed to be complacent. But you know what I’m not. I’ve been stuck in this place for months now. I keep telling myself I’m going to climb out of this hole, but I just don’t!

I’ve been having to drive to Hobart every single day which has really given me some good Jesus time. This morning I was coming over the “mountains” around the “lake” and the sun was just breaking through the fog when this song came on the radio…

Followed by …

 

 

Think God was trying to tell me something?

I can’t get away from Him. I can’t outrun his love. I can’t be apathetic enough that he just throws in the towel and says well she’s beyond my help.

I am not alone. He loves me. He is for me.

I know I needed that today, who knows, maybe someone else does too.

 

 

Thoughts on Still Alice From Someone Inside the Nightmare

So I've steered away from really delving into this topic, mainly because I wanted to process my thoughts. I'll throw out this disclaimer: I have not seen the movie. I just haven't been able to make myself go yet. I think I will want to watch it from the comfort of my own bedroom where I can cry to my hearts content. But I do want to watch it.

Here's why:

The main reason is because I think that this book/movie sheds light on a subject that is not often talked about and very seldom discussed. Before this turn of events in my life I had heard of early-onset but I had no idea that it can strike people as early as their 30''s. It is a vicious disease. I'd seen what happened first hand with my grandmother, but hers was different and honestly I just didn't realize how fast and devastating it can be for a person in their 50's. Anyways I think it's so important that more people start talking about and truly understanding what this disease really is. More people talking about this can lead to more people searching for a cure and I like that possibility.

I also have an ulterior motive. I think that this book/movie is a good way for people to understand what life is like when you are living with someone with early onset. So many people have told me and other family members that we need to read this book. My response is almost always I LIVE this book ... but I hope that when you read it, you gain a better understanding of what my family is going through.

I want to just throw this out there. I've taken some flack for making comments about how I get tired of hearing that someone knows exactly what I'm going through because their grandparent had Alzheimer's at 75 or 85 years old. I don't mean to be heartless...I really don't. I just wish I could get people to understand. If my mom had developed this disease in her 70's or her 80's ... I wouldn't have loved it, but I could deal with it. It would still be ugly and horrible and devastating...but it would be different. She'd have lived her life and enjoyed watching her grandkids grow up and while it would be awful ... we'd make it.

We will still make it now ... I know that, but my mom is only 55. In the past year we have already lost so much. This disease has progressed so quickly. That means our good years are fleeting and that breaks me in ways I never knew I could break. My mom is going to miss so much. The hubs and I were talking the other day and I told him I feel like I am stuck in a never ending grieving process. But honestly that is what it's like. I'm grieving the loss of the mother I knew ... but she's still here. It's just all so hard.

Anyways back to Still Alice, here's are my thoughts, sort of random and thrown together, so take them for what they are worth - just opinions from a girl living this nightmare.

It was so painful for me to read what the main character was going through as she began to notice the trouble she was having. I saw so many things that I felt like if I had been paying attention sooner I might have noticed that! It was difficult to read about her struggling and searching for words and things she'd just always known. However, I think it gave me a really good picture of how my mom was feeling. It broke my heart into a million pieces because I saw in the main character my mother and I saw the fear and it just hurts to know that is how my mom feels so often and there is really nothing we can do about it.

I don't want to spoil the book/movie for those of you who haven't read it, but I will tell you I struggled greatly with "the plan." But I totally get it. Like more than you would believe. I totally understand what would cause someone to set up a plan like that. I think for us mom was already so advanced by the time she was diagnosed that even if she wanted to come up with a plan like that it would be too difficult. But I will tell you this ... on many occasions my mom has mentioned wishing she had a way out. The depression that comes along with this disease in and of itself is enough to cause that kind of thinking, but add to that the fear, confusion and devastation that the person is dealing with and you can only imagine.

Another part that was hard for me was that this family just ran right out and got tested to see if they had the gene. I'll be really honest this is a point that a lot of us disagree on. I for one think I want to know for no other reason than it will determine for me if the boy is the only birth child I have, if that makes sense. But then there is a part of me that wonders how I will live knowing I have it. It's something I think about A LOT and something that I go back and forth on, honestly.

The disease moved extremely rapidly in the book. Some people have argued that's not realistic. Honestly, I don't know what I think. I think that in the past year my mother has progressed so quickly it hurts to think about the future. I'm not sure how much longer I'll get to have her "with" me. So I'm trying really hard to just take every single day and make the most of it. I don't want to have regrets when it's all said and done.

So I know this is a lot of random thoughts, but overall I really liked the book. I won't let my mother read it. She doesn't need to read about the experiences that are to come. I don't want to put any of those thoughts in her head.  However, I made my dad read it and I think on some level it has helped us both to be more patient and understanding (which is not to say at times it is not the most overwhelming thing ever, but more on that later). I do think it will give outsiders a better idea of what our life is like...then again maybe you have to live it day in and day out to understand it.

The people pleaser in me feels like I should offer this disclaimer: I in no way mean to diminish other peoples battles and struggles. One thing I am learning daily is that we all have our mountains to climb. While my struggle might look different from yours it doesn't make it harder or more difficult it just makes it different. When my grandmother was still alive and suffering from the brutal disease or dementia - it was AWFUL. It was just a different kind of awful. I don't know if that makes sense or not, but I want people to understand I'm not trying to be woe is me and look how awful our life is. I'm trying to be honest. This disease sucks. But for today I still have my mother. She still knows who I am and while we definitely have our struggles and this stupid disease is stealing bits and pieces from us every day ... she is still here with me and I am grateful for that every second of every day!

I'll leave you with this for tonight. These are my two very favorite passages from the book.

"You're so beautiful," said Alice. "I'm afraid of looking at you and not knowing who you are."
"I think that even if you don't know who I am someday, you'll still know that I love you."
"What if I see you, and I don't know that you're my daughter, and I don't know that you love me?"
"Then, I'll tell you that I do, and you'll believe me."
  - Still Alice

I love that one because it just cements in me that even when she can't remember I still will. I will remind her of the love and moments we have shared ... and she will know. She will know how loved she is.

"And I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I can't offer it the names of the US Presidents in exchange for the names of my children. I can't give it the names of state capitals and keep the memories of my husband.
...My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I'll forget that I stood before you and gave this speech, but just because I'll forget it some tomorrow doesn't mean that I didn't live every second of it today. I will forget today, but that doesn't mean that today doesn't matter."
- Still Alice 

Don't forget the Walk to End Alzheimer's. The walk is on September 12. Our team is called Memory Keepers. Click the picture below to join our team or donate money! 

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!