Moving

This blog is no longer active. I've moved to the address below!

Please follow me over there, I think it will be much more user friendly for us all! 

www.hegivesgreatergrace.com


See ya there!!

Not Enough

So remember a few weeks ago when I wrote about the darkness? It was bad. It had been bad for a while now. I think I thought I was hiding it better than I had been but it was there BIG time.

Once I finally admitted how bad things were I floundered around for a few days trying to figure out what to do. Then one day I just decided to get up. I decided I was the only one who could pull myself up out of that hole…

So I started paying attention to what I was filling my head with. I started carving out time for myself. I started caring. Let me tell you finding time for me has been the hardest part. I’ve actually been getting myself up around 4:40 every morning. I go to the gym (most mornings) then I come home and have time to spend some quality time in the Word. It has also helped me not feel so stressed and rushed in the mornings.

Another thing I’ve been doing is meal prepping on the weekends. It has helped SO much! All we have to do is grab a meal and read the directions … but that’s a whole other post!

So I’ve also been reading a lot! I’ve grabbed the people whose words are good, whose words breathe life and I’ve been saturating my brain with them. And you know what? It’s helped. I feel better. Even on hard days, I feel like I’m in a good place.

Things are still hard. I still feel like I’m in this long process of losing my mother and there are days when I don’t really want to care or try, but I’m working on giving myself some grace on those days. There are mornings when I didn’t even get home until 9 the night before … my alarm goes off and I just want to sleep. I’m working on giving myself grace on those days. There are days when I NEED a cheeseburger if I’m going to make it through and you know what? I’m working on giving myself grace on those days.

Why is grace so hard? Why do I usually offer it so freely to others and have such a hard time with offering it to myself?

I want to believe the absolute best about people. I want to believe there is still good in this world. I want to offer 2^nd and 94^th chances for people to turn it around because I’ve been offered the same. But when it comes to giving myself that same chance … well … it’s just hard.

I’ve been thinking and reading a lot about grace lately. I’m currently doing two online bible studies and I would encourage you if you aren’t partaking to get on board. Every morning you get the devotional sent to your inbox. They are not laborious devotions with mountains of questions to answer and passages to look up, although those have their place as well, but in this busy season of my life I need simple. I need the heavy lifting already done for me. I just need to soak it in and let it saturate.

She Reads Truth (http://shereadstruth.com/) has monthly plans. It gives you scripture and then it gives the devotion, followed up with some application at the end. The other one I adore right now is If:Equip (http://www.ifequip.com). This one is just scripture, that’s it. Then a short two minute video to pull out some good stuff at the end. Just soooo good. Trust me on this, have I ever led you wrong here?

Okay but back to grace. So this morning in my reading I found this gem…

Grace is the great leveler — we all need it, heaping amounts of it, all the time.

We ALL need it. All the time. Do you know who is included in that we? Yep, us. We need it. It is our life blood. It is our fight song… we need Grace.

 

 

Do you know what the most beautiful thing about this is … it’s ours for the taking. One of the hardest things for me is coming to realization that I CANNOT earn this grace. I cannot be good enough, smart enough, studious enough, put together enough, feed my kid all the healthy meals enough, take care of myself enough, protect and guard my marriage enough, treat my family lovingly enough … anything enough to earn this grace. I CANNOT earn it. I have to take it.

That’s hard for me.  I would bet I’m not alone here.

This life is hard. It knocks us down … hard. But through it all… God does not abandon us. He does not leave us. I love this …

When we are faithful and when we are faithless, our God reigns. Whatever the circumstances we find ourselves in, He is the one true King.

Gah so good! It just takes the pressure off. Do you need the load lightened today … there is hope. Don’t give up. Keep fighting, keep going and know that our God reigns.

Update on Life and the Walk to End Alz

I have had good intentions of writing more … but it just never seems to work out. There are just never enough hours in the day, especially when all I want to do after the boy goes to bed is binge watch Netflix J!

Things around here are moving along pretty steady. We have good days; we have not so good days. Then we usually throw in a couple heartbreaking days, but overall we are doing pretty well. My dad amazes me daily. He has become the full time caregiver. Mom can’t be alone really at all, but at least not for more than a really short period of time. She wanders, gets lost, and gets so easily confused, it’s just not good for her to be alone. One of our current struggles is getting her to tell us when she goes somewhere. We’ve had evenings where we search the house over and can’t find her anywhere. Panic sets in and then someone spots her on the back porch. We’ve made a rule she has to tell us when she goes outside, but she forgets. This is just how living with someone with this disease is though.

We are learning to manage and take the difficult days in stride. They don’t knock us down quite as hard as in the beginning. It’s so sad how you just learn to accept this stupid disease.

We are about to embark on some serious change. We spent time talking with our old doctor before he left us L and everyone decided that if we were going to do this now was the time. So the hubs and I are about to buy my brother’s house, he and his wife are going to buy my parent’s house, and then my parents are going to build a very small house in between both of us that will be handicap accessible. The loans have all been approved we are just waiting on appraisals at this point. I think it is going to be really good. Mom and Dad will be building something small and simple. It will be catered specifically to her and what her changing needs are. The doctor feels lie as she loses her sight completely this will be a good step in having a place for her to feel comfortable.

We don’t talk about this much but…there will come a day when she won’t be able to care for herself at all. On the heartbreaking days we see glimpses of this and it stinks, but my dad wants her at home with him for as long as possible and building this home can help with that.

In October we are going to see a new doctor. She’s terrified. They most recently went to see a doctor here in town and it did not go well. Within two minutes this doctor decided that mom had been misdiagnosed and had MS. I could write a whole post on how angry this makes me … but it doesn’t matter because she won’t be seeing him again. We are going to see Dr. Hope in OKC.  We are hoping that she will be able to just help us manage as we progress. Mom is terrified she’ll want to do more tests and stuff we just don’t want to deal with. I’ve told her we won’t. We are in charge of her treatment. It stinks our doctor left but we will figure it out…one step at a time. That seems to be the motto of my life lately!

Lastly, I just want to talk about the walk! Oh my gosh you guys…I’m not even sure I have the right words to say because THANK YOU just doesn’t seem like enough.

On August 12, I posted and said we were about 61% of our goal. Today August 22 – 10 days later – we are $10 away from our team goal. I want to blow our team goal out of the water. I can’t even explain to you what this means to my mother. Every time I tell her someone new has donated or joined her team she cries. She keeps telling me she didn’t know all these people still cared …

It’s not too late to join us or to give. I’ll post the link below. 

http://act.alz.org/site/TR/Walk2015/OK-Oklahoma?pg=team&fr_id=7738&team_id=259183

I’m also trying to have some t-shirts made. Can you let me know if you’d be interested in purchasing? They will have this on the front:

And then on the back hopefully it will say #we <3 Susie.

I need an idea of how many I need to order. I’ll be reaching out to you soon who have joined our team and our planning to walk with details. If you are planning on walking with us but haven’t joined (or just don’t know how – like my sweet Mammaw) reach out to me so I include you in the planning. The walk is three weeks from today – eek!!

As always the support and encouragement you give blows us away … thank you. 

So Now What?

Well I poured out my soul yesterday and then last night I found myself asking okay so now what? I’ve acknowledged I have a problem. I work with addicts, I know that’s the first step. But that seems like the only step I know how to take.

Here’s what I’m going to say … I got a lot of responses yesterday, both positive and negative. Here is what I am taking away … I am not only one struggling through this season of life but being open, honest, raw and messy about these struggles makes people uncomfortable. People don’t like to be uncomfortable.

I own 100% that I am the one putting myself out there and so there will be criticism. There will be feedback that is hard to take, but today I decided it’s okay because I know I am not alone in this. There are others who feel defeated. There are others who want to give up.  There are others who are doing the very best they can to just keep putting one foot in front of the other. So I will write for them, because I want us to feel normal. I want us to know that just because people have made us feel like it is not okay to talk about the way we feel, it can be okay for us.

So what now?

I asked myself that question a lot yesterday and today. I had secretly hoped that I would be honest, I would lay it all out there and today I would wake up feeling healed, better and ready to face life. I thought things would maybe be easier to deal with today. You guys… not even. Today was one of the hardest days I’ve had. I literally had to get in my car and have a crying meltdown while trying to order a Diet Coke from the drive thru girl. I felt her looking at me like, “Child, bless your heart.” I have felt more overwhelmed, more stressed, more tired and more done all in this one day. But here is what I tried today…when I felt like I was about to break, when I could not take it anymore, I reached out. I sent a text to a friend I knew would be there and said I’m sinking…lift me up…and they did. They responded almost immediately, let me know I wasn’t alone, they grounded me and let me tell you they were praying. I know it with everything in me. 

  

Another step I’m taking besides reaching out is I’m paying more attention to what I put into my head. Here’s the thing, I was taught from early on garbage in = garbage out. There have been times in my life when I tried to convince myself that the music I was listening to, etc. wasn’t really affecting me. Honestly, there are times in my life when Luke Bryan is just what the doctor ordered. But for me, for right now, the messages I’m putting into my head and my heart are more important than ever. So…my radio dials are set to Christian music (I’ll be back Luke…wait for me ;)!) because I need that positive message being put into my head as much as possible.

I also went on a podcasting downloading frenzy. I’m in my car A LOT right now and this is a good time for me to be fed. (Which is another point, I hope I remember to make in a second.) So anyways, I found a few good recommendations and downloaded like crazy. The first one I turned on yesterday was divinely for me. It’s a podcast called “Happy Hour with Jamie Ivey.” I listened to her latest episode with Jess Connolly.  Since then I’ve gone all the way back to episode 1 from last year and started over. It’s not a heavy hitting sermon series (although I need that too) but it is more just like girlfriends talking. I’m hooked. This first episode had a moment that I truly believe I was meant to hear. Jess was talking about how she has hit a point in her life when she is struggling with something where she just throws her hands up and says “I am taking myself out of the running for this.” So if it’s a body image issue she just says, “I am taking myself out of the running for having the best bikini body.” If it’s a mom issue, “I am taking myself out of the running for mom of the year.” It’s a simple gesture (and maybe cheesy) but you guys I’ve done it like 5 times today. I have thrown up my hands and said (yes literally out loud), “I am taking myself out of the running for knowing all the answer to this.” “I am taking myself out of the running for having the highest GPA.” “I’m taking myself out of the running for making everyone around me happy.” It seems so simple to say it out but it has been freeing for me today.

I think that as I put more positive, Jesus things into my head, my mindset is slowly going to change. Now it didn’t happen overnight (ask my friend, they will vouch for that), actually I was more crazy town today probably…but I’m hoping it’s because I’m more aware of it because I’m acknowledging it instead of just avoiding it.

Here’s a list of some podcasts that I recommend:

Happy Hour with Jamie Ivey

The Lively Show

The God Centered Mom Podcast

Also as far as sermony type stuff, I’ve tried:

Tim Keller

Great, Great. Great. But not a weekly podcast. 

Radical. David Platt

Austin New Church

Disclaimer: I've only listened to one, the audio quality was struggling but this was good stuff...really good. 

Finally, I’ve decided I’m going to focus on one big thing that I feel like needs fixed in me right now. First up I’ve picked prayer. Here’s the honest ugly truth … I’m not sure I really know how to pray. I know I feel your eyes bugging out of your head, but weren’t you a youth pastor’s wife? Haven’t you grown up in the church and been a Christian for like 25 years? I know, I know … the truth is I know what I’ve been taught and/or told where praying is concerned. But I can honestly tell you the discipline of prayer does not exist in my life. There I’ve said it. People tell me, just pray about it, take it to God … and I know what they are saying and I know what it means, but for me I don’t feel like I’m there. So (and this is another one of my new goals I’m working on) I’m seeking out books and words from other people who have been in this place and come out on the other side. A few weeks ago I bought this book:  Found: A Story of Questions, Grace & Everyday Prayer. I’m not done yet, but I’m clinging to every page. I feel like she heard my heart. I’m reveling in the quiet, simple way she is approaching this thing called prayer. I reactivated my Goodreads account and set a goal to read 20 books for the rest of the year. Taking in good words … that’s something that has helped me before and I am going to make time for it again.

This might be a bit of a rambling post tonight … but I’m just working on taking the next step. I’m working on filling up my life with good things and making sure there’s no room for the ugly stuff to take over…one day at a time.

So for now that’s what’s next. 

Everything is Not Okay

Weighted Down…that’s the only way I can fully describe the feeling in my soul. I know that sounds melodramatic and most of you are probably thinking here comes the drama queen, but it is the honest truth – I feel this heaviness, this weight in my soul, that I’m not sure I know another way to describe it.  

I’ve written about depression before. I’ve talked about how it manifests itself in my life. I’ve described the darkness. But I haven’t lately … and you know why, because this time I didn’t stop the darkness when I felt it creeping in. This time I let it totally consume me. I let it invade every empty space in me and just take over.

I am terrified to write this post. I’ve actually started and stopped more times than I care to admit. Why? Because this post is real. This post brings the walls down and it says to people, this, this is who I really am. There are no more pretenses, no more masks, and no more games…just me. I’m terrified of what people will say, I’m terrified of their reactions…but I think I’ve finally hit the point where I’m more terrified of what ignoring it is doing to me. So here I am…This is me.

I have given up.

I’m not sure when it happened. I can’t pin point for you the exact moment I just threw up my hands and said I’m done. My hubs and maybe one close friend could identify it better than I. But it happened, and when it happened I went back to doing what I do best – faking it. Just going through the motions. It has served me well in the past and it is comfortable for me. I know what is expected of me. I know what people like and want to see and hear – so I oblige. “Yes, I’m doing great.” “Just taking it one day at a time.” Blah, blah, blah … When the reality is I am barely surviving, actually some days I’m really not even surviving. But it’s easier to say I’m fine. It’s less messy.

But I made a promise to myself 2 years ago that I wasn’t going to be okay with fake. I was going to dive into the messy and let it be what it is regardless of what people say or think. I was going to talk about the hard, talk about the unpleasant, talk about the darkness, talk about the mess. But somewhere along the way it got too hard. But I have a friend who asked me some really hard questions this weekend. One of which was why am I letting my mom’s disease destroy my marriage…destroy me? Touché. It was actually a hard pill for me to swallow. But one I needed to hear.

I have let this disease devastate me. I have let it steal from me. It is already stealing my mother, but I realized that it is stealing my joy too.

People don’t talk about depression. They don’t talk about anxiety. It’s too messy. I get that. I also get that the internet does not need my words regarding the subject. But I need to write them. I need people to understand what it feels like. I’ve struggled with depression and anxiety before.  I’ve had the moments where I felt like driving my car into oncoming traffic. This time it’s different. This time it just feels heavy. I struggled to really recognize it at first. It felt normal to be feeling overwhelmed with all that we are dealing with. But I didn’t realize how bad it was getting until I was too far gone.

This heaviness makes it hard to breathe. It makes it hard to function. I have so much on my plate that I just keep putting one foot in front of the other. Get up, go to work, go to school, go back to work, go home, smile and nod, go to bed, start again … But I don’t feel anything … but numb. When I do feel something, I feel it so dramatically, so intensely, so disproportionately that it scares everyone around me.

I worry constantly. But this time is different… I know the problems are there. I know there are decisions to be made, things to do and I. just. Don’t. care.

I’m tired. Tired of feeling anything and everything…just tired.

That’s messy isn’t it? It’s hard. No one wants to hear it. We all know it’s out there but we just want people to grin and bear it. We want them to smile and nod because that is comfortable to us.

After a really bad day this week, someone made the comment to me that every day is a good day for them. Regardless of their struggles, they choose to make it a great day. I wish it was that easy for me. But it’s not and no matter how well-meaning you are trying to be, your telling me about how awesome you are does nothing for me, except make me feel guilt about not being as good as you. So I want to be the voice that tells people it’s okay to not be okay. It’s okay to be tired, to be scared, to be done … but I also want to be the voice that tells people it will get better. I haven’t figured out how yet, but I believe it has to be.

Somehow in the messiness of this life I’ve lost me. But I am going to find myself again, I’m going to find my way back and I’m going to be better than I was before and once I’m back I’m going to spend my life telling people that it does get better and that even when it doesn’t you are still going to be okay.

 

Not Without a Fight

Seriously...how is it July 2nd??!

I made a bunch of blog goals, I set out to start brand new on June 1 and now it is July 2nd and I've made one post. Ugh, so frustrating. At the same time I've been swamped. School this summer is kicking my tail, work is crazy town and well life just got away from me.

The past month has been eventful. It's been hard, filled with lots of tears, but we've made some beautiful memories as well. Asher turned two! How that is even possible is beyond me, but he did! He is talking up a storm and I feel like he develops a new skill every single day! This is one of my favorites from his party ...

We saw our doctor this month. We did an MRI to compare with last years which was in October. The change was significant. This stupid stupid disease ... I wish we could make it stop progressing as quickly as it is. The doctor was surprised at the rate of progression. He changed his prognosis and we started a new medicine. We've moved well into the moderate stage. It stinks, but it is what it is. I've learned over the past few years that fighting what is wastes time and energy that could be better spent elsewhere. I don't always get it right, actually I probably get it wrong 9 times out of 10. So I guess saying I learned it is a stretch lol, I am learning ... that's probably more like it. The worst part of our visit came at the end when our doctor let us know he is going to Cal Tech. Ugh! It was heartbreaking for my mom and so frustrating for dad and I. This doctor has been nothing short of amazing and losing him is devestating.

Life with Alzheimer's is difficult. That's laughable ... life with Alzheimer's sucks. There are days when she can't form a sentence to save her life. We spend hours looking for something that she can't remember what it is we are looking for. We stress over E.V.E.R.Y.T.H.I.N.G. That one is tough for me. She fixates on things (most of the time not whole truths mind you) and completely fixates on them. She worries and stresses and worries and stresses and it doesn't matter how many times you explain it ... she's still going to worry or stress. Those are the days that usually end with tears. Somedays they are mine, somedays they are hers ... It is so incredibly hard to watch someone go from being one of the strongest, smartest people I've ever known to not being able to put her shoes on the right feet. But this disease sucks.

I do have to say if there is any one person who has completely blown me away (besides my husband who is the saint to end all saints) it would be my father. I have seen this man turn into the most selfless, giving person over the past year. He spends practically all day everyday with my mom. They watch TV, work in the garden, go to the store ... it is a blessing if there can be one in all of this and for that I am so incredibly grateful.

Can I just vent for one minute? I watched a clip on the news this morning about Alzheimer's and the effects that the disease has on a family. Do you want to know how old the people suffering from the disease were? Yeah 70's and 80's, each one had children in their 50s and 60s helping take care of them. Have you seen the new commercial for the alzheimer's drug Namenda? Have you noticed how those people in the ads are in their later stages of life? This is something that has been driving me crazy lately. CRAZY! Alzheimer's is not just a disease that affects old people. My mom is 55. FIFTY FIVE! She still has so much life that is supposed to be left. Yet, all you hear about when you hear about dementia and alzheimer's is people in their 70's and 80's. Again...(yes I whine about this alot) I mean absolutely no disrespect to people dealing with this god-awful disease later in their life. It is still difficult and hard and horrible. I would not wish it on anyone. However, dealing with it with my 80 year old grandma is so incredibly different that my 55 year old mother.

I just find myself so frustrated. Why does no one talk about this disease? How is it 2015 and there is such little progress being made? Our doctor said one thing that has stuck out with me. Yes, this is a horrible disease, but too often people just dimiss it because most people suffering from it have already lived most of their lives. It doesn't have the same appeal and star power that other disease get and frankly, that just makes me so angry.

Back in February, I decided to raise money and awareness by doing the Walk to End Alzheimer's. The walk isn't until September so I haven't been pushing it much lately, but it is time to ramp up the awareness. The cold hard reality is, this disease is prevalent on my side of the family as well as Chris's, that doesn't bode well for my little Asher man. I have an elevated risk for developing this disease early as well. Want me to put it in perspective for you? The doctors believe the onset for my mother was 6-10 years ago. Let's go with 6 ... that' would put her at 49. I'm 33. That means I have an elevated risk of developing this disease around that same time frame as well. Being generous that would say I have about 17-20 years. I do not want my sweet little Asher man to have to deal with the things we are dealing with now. I want there to be better meds, better options, heck, a cure! But if not for me I especially want it for him. He is an even higher risk. So I'm doing this walk to raise awareness. I'm doing this walk to raise money for research, but most importantly I am doing this wak to show my mom that she is not alone.

So far we have 10 team members counting my mom and I. We have raised $745 of our $2000 goal. Who is willing to stand with us? Who is willing to give time and/or money? So many of you have reached out to us and let us know you are with us. You've told us we aren't fighting alone. So who will step up?

Follow this link...

http://act.alz.org/site/TR/Walk2015/OK-Oklahoma?team_id=259183&pg=team&fr_id=7738    

and join us. Every little bit helps. Let's set a record. Let's make a stand and let's show this stupid disease we aren't going down without a fight! Who's with us??

Brain Awareness Month and a New Take on this Blog

 

Part of my struggle is getting people to better understand this disease that my mom suffers from. I honestly don’t think people get it and I don’t blame them. They mean well they really do, but they just don’t understand. Alzheimer’s is seen as an old person’s disease. I know that sounds harsh – but I really don’t mean it to. It’s just honest. Most people think that this is a disease that won’t get worse until my mom is older … oh how I wish that were the case.

Last week, someone that used to be extremely close to my mom, asked me if her memory was getting any better. There are just so many aspects to this disease that people don’t really understand. I’ve been thinking about this a lot and with that in mind I’ve decided to make some changes to my blog. I’m going to be writing more often but on more of a schedule. I will be writing three posts a week and plan to be tackling this disease as head on as I know how. I’ll be sharing stories from others who I’ve met struggling with this life altering disease, I’ll give you a peak into what our life is like and then I’ll be sharing research and information useful to understanding this disease.  So feel free to keep reading, or feel free to break ties! J Totally up to you!

So with all that in mind today I want to break down our diagnosis the best I know how.

First let me start by saying we do have Early Onset Alzheimer’s (EOA), but we are also dealing with a nasty little form of dementia on top of the EOA. It is called Posterior Cortical Atrophy (PCA). So let’s start with the EOA.

EOA is an early form of Alzheimer’s. Alzheimer's is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. Younger-onset (also known as early-onset) Alzheimer's affects people younger than age 65. Many people with early onset are in their 40s and 50s. In the United States, it is estimated that approximately 200,000 people have early onset.

Alzheimer's disease typically progresses slowly in three general stages — mild (early-stage), moderate (middle-stage), and severe (late-stage). Since Alzheimer's affects people in different ways, each person will experience symptoms - or progress through Alzheimer's stages – differently.

In the early stage of Alzheimer’s the person can still function independently. They can still drive, work and often be part of social activities. The person may feel and recognize memory lapses such as forgetting familiar words or the location of objects. Friends and family will begin to notice difficulties.

Common difficulties include:

§  Problems coming up with the right word or name

§  Trouble remembering names when introduced to new people

§  Having greater difficulty performing tasks in social or work settings

§  Forgetting material that one has just read

§  Losing or misplacing valuable objects

§  Increasing trouble with planning or organizing

Moderate stage is typically the longest stage and can last for many years. Family and friends will notice the person confusing words, getting frustrated or angry, or acting in unexpected ways, such as refusing to bathe.

Noticeable symptoms to others may include:

§  Forgetfulness of events or about one’s own personal history

§  Feeling moody or withdrawn, especially in socially or mentally challenging situations

§  Being unable to recall their own address or telephone number or the high school or college from which they graduated

§  Confusion about where they are or what day it is

§  The need for help choosing proper clothing for the season or the occasion

§  Trouble controlling bladder and bowels

§  Changes in sleep patterns, such as sleeping during the day and becoming restless at night

§  An increased risk of wandering and becoming lost

§  Personality and behavioral changes, including suspiciousness and delusions or compulsive, repetitive behavior like hand –wringing or tissue shredding.

In the final stage of this disease individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases, but communicating pain becomes difficult. As memory and cognitive skills continue to worsen, personality changes may take place and individuals need extensive help with daily activities.

At this stage, individuals may:

• Require full-time, around-the-clock assistance with daily personal care
• Lose awareness of recent experiences as well as of their surroundings
• Require high levels of assistance with daily activities and personal care
• Experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow
• Have increasing difficulty communicating
• Become vulnerable to infections, especially pneumonia

Okay so with that we are living in the moderate stage. Some days are more of a struggle than others as far as what we are able to do, but for the most part she can’t be left alone for long periods of time and she most of the symptoms in the moderate stage ring true.

So now let’s talk about Posterior Cortical Atrophy.

PCA refers to progressive degeneration of the outer layer of the brain in the part of the brain located in the back of the head. The onset of PCA commonly occurs between ages 50 and 65. Symptoms vary by person and change as the condition progresses. The symptoms of this disease are consistent with someone experiencing neurological damage. They include difficulties with visual texts such as reading a line of text, judging distances, distinguishing between moving objects and stationary objects, inability to perceive more than one object at a time, disorientation and difficulty maneuvering. This visual impairments will eventually lead your brain to no longer be able to process sight. So while you technically won’t be blind, you’ll be functioning as a blind person. Some patients (including mom) experience hallucinations. Most patients have difficulty performing mathematical calculations or spelling. They experience extremely high anxiety, most possibly because they know that something is wrong.

So just having one or the other would be a lot, having both is devastating to someone’s everyday life.

I pulled most of this information off my favorite website right now which is http://www.alz.org/. It has so much information and is my go to website when I’m unsure about something disease related.

This is just a little bit of what we deal with day to day. Imagine you had a life that you loved. You had a new grandbaby, you had a job that you were good at and people knew you were good at it. You had a life that you loved. Then slowly, it started to feel like something wasn’t right. Numbers didn’t add up the way they used to. Words got jumbled in your head. You couldn’t explain yourself clearly and you kept getting lost in places that were incredibly familiar to you. After lots of tests and frustration you find out you have this horrible disease. You can no longer drive, you can no longer work, you can no longer stay alone with your new grandson. Your world just stops … You used to love to read to pass the time, but you can’t follow the text anymore and it’s becoming harder and harder to see.  Now you often see things that aren’t there. You can’t remember stories and things you used to love. This is your new normal. But all your old friends…their lives kept going. Their lives didn’t stop. In the beginning they cared, they made time for you, but overtime they’ve gotten so busy because their lives kept going that you hardly see or hear from people who were once considered best friends. You feel lonely, sad, angry – and that’s just the tip of the iceberg …

This is her life … This is her every day.

It will not get better, NEVER. There is no hope for people who suffer from this disease. It will only get worse.

I’m sorry I’m not sugar coating it for you. I’m sure that makes you feel a little uncomfortable and I’m sure some of you want to remind me that God has a plan in all this. He does…I agree. But maybe just maybe part of that plan includes you. Maybe it includes me helping people understand the ugliness and the horribleness that people who deal with this disease are faced with.

I want to end with this - if you click on the picture at the top of this post you'll be redirected to take the pledge for Alzheimer's Awareness.  Worldwide, 47 million people are living with Alzheimer's and other dementias. Help us turn the world purple. Commit to raising awareness in June for Alzheimer's & Brain Awareness Month.

I'm grateful for you.

 

You Are Loved

I was at my sweet in laws church this past Sunday in Tennessee and I got to hear this amazingly precious testimony from one of the women in their church. She talked about being sweetly broken and wholly surrendered. I have not been able to get that phrase out of my mind.

Sweetly broken …

The past year and a half has left me feeling pretty broken. Every time I feel like I’ve hit rock bottom, something happens and I feel like I find another 10 feet down to go. Oh who am I kidding, it’s definitely 100 feet, and I just keep hoping at some point there will be an actual bottom, right?

But sweetly broken?

There a lot of days (most days) when I struggle to find anything sweet about this journey we’ve been going through. There are days (like today) when my very character is called into question and I wonder how I’m doing it all so wrong. I try so hard to handle this with as much grace as I know how to do … but it’s tough. It’s especially tough being beaten down and broken over and over again and wondering where the rule book is or the guide that walks you through how to handle this type of stuff.

But then I’m reminded about the wholly surrender … that’s what makes the breaking sweet. It’s in recognizing that the whole point of the brokenness is to lead me to a place where I can throw up my hands and say I can’t do this without You…

And if I’m being honest, most of the time when I hit bottom I can look up and realize I was trying to do it on my own and that’s probably why I’m down here.

Today has been a tough one for me on just about every level. I’ve cried a lot. I’ve felt attacked. I’ve felt misunderstood. I’ve felt judged. I’ve felt alone.

But you know what God did … he brought someone to me. Someone that was feeling those things too. Someone who had just had enough. Someone who like me, was sitting at the bottom yet again. And through that person he reminded me that even though it’s tough and even though it is hard and though I hate it and just want to give up – I’m not alone. He sees ever tear. He hears every word spoke against me. He is mu judge and my defender … and I’m not alone at the bottom. I never really was.

So if you feel alone, if you feel hurt, if you feel scared, broken or just done … there is someone who cares. It’s hard sometimes to let Him care, because we can’t always see Him or hear Him and it’s hard to know He is there – but then He sends people at just the right moment to pull you in for a hug and say I get it. You are not alone. You are not a bad person. You are doing the very best that you can and putting one foot in front of the other and for today that is enough, regardless of what anyone else says.

So for today – let it be enough. You are enough. You are loved. 

The One I've Been Putting Off

So you know how on Facebook they have this thing now that lets you see your “memories”. The past few days of memories have been really hard for me. Sunday it was one year since my mom’s wreck, yesterday was one year since the doctors started telling us what we were really dealing with … I can’t believe it has only been a year.

The emotions I felt during those days – have come bubbling back up over the past few days and they are hard. I say all the time I’m so grateful that I still have my mom … but man some days are tough, because I so miss the person that she was. Looking back to a year ago I remember being so scared. I remember feeling that everything was changing and not having any idea how quickly it would change. I have no idea what the future was going to look like (I still don’t really by the way) but it was just all happening so fast. I had no control … and for me, that is terrifying.

Now here we are a year later …

It’s still scary. There is still no control. But there is a lot of love. Most days I’m not sure which way is up and which is down, but I know that we love each other. I know that in the midst of incredible darkness we have grown closer together than I ever imagined possible. I know that there have been people fall away, and there have been people step up and embrace this incredibly difficult journey alongside us.  

So while I still don’t have the answers I wanted and I still don’t know what’s coming – I know that we have each other and for right now that’s enough.

…

So how’s it really going?

Some days are great, other days are not so great. Some days she knows all the things, some days she knows no things. Things out of the ordinary (like these ridiculous storms lately) really throw us for a loop. Dad has been going out to Elmer and helping with clean up and setting up generators for people and mom has had the best time. She tells me all about the people she’s been meeting. These are people she has known all her life. People she grew up with, went to school with, spent time at their homes… it’s heartbreaking when you stop and think about it, but for now I just focus on the fact that she’s loving meeting all these new friends. J

We are taking it day by day as best we can. The nightmares are back, but that’s most likely because we decreased her sleeping meds because of the hallucinations during the day. It’s a no win situation no matter how you look at it.

We go back to visit the doctor on June 1. I have mixed feelings because it really sucks knowing there is nothing new to try or do. It’s just a crummy disease.

I’m working through my anger … or trying to. Some days that’s also easier than others. But we just keep going…one foot in front of the other!

June is Alzheimer’s awareness month! You’ll probably see me posting lots of things and also get ready for me to start really promoting our walk in September. We have a team and I hope to get busy really fundraising and moving forward on that. If you’re reading this – think and pray about how you can be involved. There may be no answers for us, but there is hope. There is a lot of work to be done in this field and we want to do all we can. I’ll post the link below in case you are interested or want some more information!

http://act.alz.org/site/TR/Walk2015/General?px=9952010&pg=personal&fr_id=7738

Thanks for all you do for us. We are forever grateful!

Be Grateful

It’s been a while…and then some. I wish I could tell you all sorts of happy updates but then I’d be lying and I try to keep it real here. It has been a month exactly since I last wrote. I was looking back at my post today. I wrote about hope. Can I just be honest … there are times when this stupid disease feels so completely hopeless. It’s like looking down the barrel of a gun – there is no good outcome here. Some days that can be so completely over whelming and depressing. We try to be positive. I try to focus on the good days, the good moments, but sometimes when it is quiet and I’m alone (which truly is VERY rare) I find myself just weighted down by the heaviness of it all.

Mom is doing okay. Conversations can be hard. She is starting to forget some people. She has forgotten a lot of “skills.” She forgets conversations and sometimes she flat out makes them up. It’s an interesting dichotomy. Sometimes I feel like I have a 2 year old and a teenager. People just don’t understand. You just can’t, honestly, until you live in this situation – you never could understand. I never could have either – but I thought I could. I thought I could look at people and tell them I knew what they were going through. But I was wrong. Dead. Wrong.

There are good days. Don’t get me wrong. Dad visited a man who is living with his wife in their home. His wife has Alzheimer’s.  She weighs 73 pounds. She spends her days in her bed with hospice looking after her. We are far from there … so there are good days. But this disease is brutal. It has taken my mother for me and that is a hard pill to swallow.

I’ve been thinking a lot about Mother’s Day coming up. I know I am lucky. I have friends who have had to bury their mothers. I have mine. I know I do … but there is still a part of me that is just so angry because I don’t have her. Not really…the mom I had for 32 years is not the same woman that I live with now. She still loves me and most days would do absolutely anything for me, but the lady that throws a fit when I try to sneak out to the grocery store for just an hour of alone time, that lady is not the same. There are days that sit back and I think mom would be mortified if she really knew she was saying that. I guess that’s where the consolation comes in.  It’s not her saying it … not really.

I had a great mom. Seriously. She loved both my brother and I with all she had. She would do anything for us. She worked hard to provide for us. She was smart. Like seriously smart, in a way that I am not (Don’t tell him, but I think Cody got that gene from her!). She could fix any problem. She would listen to me whine and moan for hours about whatever thing I thought was going wrong in my life at that moment. I had the market for drama cornered and she put up with it – lovingly. So much of what I have learned about how to be a mom – I learned from her. I learned to listen. I learned to hug. I learned to love. I had a great mom.

…and I still do. Even though it’s different and even though she’s not the same, she’s still a great mom and I would go through all of this and more if it meant I got to have her longer. I hate it for her though, I really do, because this is no way to live out the rest of your life.

If I’m being honest, one of the main reasons I haven’t been writing lately (except for the occasional fluffy post) is because I’m angry and I don’t know how to move past it. The anger in me started small, it was a twinge, just a taste of this isn’t fair, but I let it grow and now it is a beast of a monster that seems to take over my entire being most days. It bubbles just below the surface. Where I once felt peace and happiness, I know feel this brutal anger that consumes me. And I hate it. I don’t want to feel this way, I want to let it go. I do try. I start each day giving that anger over but it doesn’t take long before I’ve taken it back and it’s eating away at me again.

Lately I’ve had some family that I’m close enough to call friends really stepping up to help me. They are forcing me to get away, forcing me to get out, forcing me to take time away from the ugliness that seems to be all around me. I’m thankful for them, so much. Even though usually I get annoyed at their persistence, they are probably literally saving my life right now. So for that I’m grateful.

I know I’m not alone … and that helps, more than most people realize. On the days I feel like I am drowning I have a friend I can text and say quite simply life sucks. She supports me … she may not always agree with me, but she gets it. She knows I’m in a place as we like to say and instead of trying to get me out of it – she is just loving me in it – and that helps so much. I know I can’t get out until I’m ready…and I think she knows that too.

Well this post has taken on a life of its own. I’m not really sure where I was headed, but here we are. I’ve sat staring at the screen for a while trying to find a nice happy way to wrap this up, but there isn’t one. And that’s okay. Life is messy sometimes and everything is not always so touchy feely lovey dovey. If there is any take away today – cherish your moments with your mom. Even if they are crummy. Even if she hasn’t always been the best. Find the good and embrace it. Or if it’s not your mom, find someone who loves you like a momma loves and cherish them today. I’m going to focus on the good things today and I’m going to be grateful for the good moments. How ‘bout you?

Hope

Yesterday was Easter. It’s always been a favorite holiday of mine because it’s really no frills. You just get together and eat (which is clearly something I love) and you celebrate hope, because after all without the meaning of Easter we wouldn’t have much hope.

I’m grateful for hope. I mean really, you have no idea, actually that’s not true. So many of you know exactly what I mean. On days when it is dark and I mean dark down to our soul’s dark, it is such a help to know that there is hope. Maybe not today, probably not tomorrow … but someday there will be an end.

Growing up I was privy to our January Crusade every year and I had the privilege of hearing Mr. Jon Randles speak on many occasions. He got to spend this Easter face to face with Jesus. He got to see his hope, his reason for fighting face to face and look square into His eyes. I know with all my heart that in that moment, it was ALL worth it and then some for Mr. Randles.

So I cling to hope, because even though there are dark days, there will come a day when I will see my hope face to face and it will all be worth it.

I cling to hope because some days it is all I have. On the days when we can’t form a sentence to save our lives, on the days when the anxiety overtakes us and we get scared and cry like a child, on the days when we aren’t sure where we are or what is going on … I have hope.

My very favorite verse states this promise …

“Yet this I call to mind and therefore I have hope… Because of the Lord’s great love we are not consumed.”

We have hope!

I’m thankful for hope today … I’m thankful for the promise, His promise and I am oh so grateful for the cross, because without it how hopeless I would be.

 

 

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.