Hanging in there, hanging on

I dont really have much to update right now.  We've had more good days than bad (thank the good Lord above) and some days mom even reminds ME she needs her meds.  I've even caught her reading and writing, which are things she hasnt even attempted to do much in the last two years, as well as use the remote to turn on and change the channel on the TV. Thats progress in my book!

We found out she has medicaid again, and now qualifies for the medicaid in home waiver program, which will allow us to access sitters and so forth should we need them. Thats great news!

A little update

I havent updated in awhile, we are just trying to keep the boat upright in the water.

Mom is doing ok, better some days than others, but better than she was the last time I blogged.  We changed some of her meds around and it seems to have helped.  She also had a short stint with a boyfriend from her adult day program, and that actually seemed to lift her spirits enough to take some control again, and even though she ran him off for being crude, the change stayed, thank the Good LORD!

She was put back on medicaid for the time being (thank you again LORD!) and we are just going day to day.

She's able to do somethings around the house with instruction again, like sweeping, or gathering up trash, or folding clothing with supervision, which makes her feel better too. She played go fish and war with the kids today, and that went pretty well.

I'll keep you posted :)

Just a quick update.

Been awhile since I updated here, so I figure I better.

Things have been slow. We've had some ups and downs, but hanging in there. Mom's dr has been most helpful with the medicaid process, and our caseworker says "things look good" not sure if that means we'll hear something eventually..hopefully sooner rather than later.

My sweet awesome wonderful (did I say awesome?) mother in law came down in mid June so the girls and I could go with the hubby to a workshop at Grenada Lake he had to give. That meant that we had a few days of downtime, it was wonderful. I needed a break and a recharge. :)

Mom's had some issues, and finally had an accident at Clubhouse. I was worried about that because a lot of places will kick 'em out. However, they were great about and are helping us a lot. that was a relief. If she got kicked from clubhouse we'd be in trouble till medicaid picks up.

she had a friend come visit from clubhouse the other day. He rode here on his motorized wheel chair. I think it kind of freaked out the hubby. I wasnt here so I didnt get to see him, but apparently it made her day.

Deep Thoughts...

I debated on posting this. Yesterday I was talking to a friend, well texting actually but that's almost "talking" these days isn't it? And shes in a rough patch. Seems like so many people are. I feel overwhelmed by the pain I feel from people. Is that the Spirit, opening my eyes to what he sees? Maybe. I know this blog is supposed to be about my journey with my mom, and it is. I said yesterday I don't believe in consequences, and I don't. Romans 8 is such a comforting chapter to me. I know most people focus on 8:28 but the whole chapter really is awesome.

Read it, if you will, and let it really sink in. I've copied in here so you cant even say "next time I pick up my Bible, I might"

Romans 8

Life Through the Spirit

¹ Therefore, there is now no condemnation for those who are in Christ Jesus, ² because through Christ Jesus the law of the Spirit who gives life has set you^[a] free from the law of sin and death. ³ For what the law was powerless to do because it was weakened by the flesh,^[b] God did by sending his own Son in the likeness of sinful flesh to be a sin offering.^[c] And so he condemned sin in the flesh, ⁴ in order that the righteous requirement of the law might be fully met in us, who do not live according to the flesh but according to the Spirit.

⁵ Those who live according to the flesh have their minds set on what the flesh desires; but those who live in accordance with the Spirit have their minds set on what the Spirit desires. ⁶ The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace. ⁷ The mind governed by the flesh is hostile to God; it does not submit to God’s law, nor can it do so. ⁸ Those who are in the realm of the flesh cannot please God.

⁹ You, however, are not in the realm of the flesh but are in the realm of the Spirit, if indeed the Spirit of God lives in you. And if anyone does not have the Spirit of Christ, they do not belong to Christ. ¹⁰ But if Christ is in you, then even though your body is subject to death because of sin, the Spirit gives life^[d] because of righteousness. ¹¹ And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies because of^[e] his Spirit who lives in you.

¹² Therefore, brothers and sisters, we have an obligation—but it is not to the flesh, to live according to it. ¹³ For if you live according to the flesh, you will die; but if by the Spirit you put to death the misdeeds of the body, you will live.

¹⁴ For those who are led by the Spirit of God are the children of God. ¹⁵ The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship.^[f] And by him we cry, “Abba,^[g] Father.” ¹⁶ The Spirit himself testifies with our spirit that we are God’s children. ¹⁷ Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.

Present Suffering and Future Glory

¹⁸ I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. ¹⁹ For the creation waits in eager expectation for the children of God to be revealed. ²⁰ For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope ²¹ that^[h] the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.

²² We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. ²³ Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. ²⁴ For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? ²⁵ But if we hope for what we do not yet have, we wait for it patiently.

²⁶ In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. ²⁷ And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.

²⁸ And we know that in all things God works for the good of those who love him, who^[i] have been called according to his purpose. ²⁹ For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. ³⁰ And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.

More Than Conquerors

³¹ What, then, shall we say in response to these things? If God is for us, who can be against us? ³² He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? ³³ Who will bring any charge against those whom God has chosen? It is God who justifies. ³⁴ Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. ³⁵ Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? ³⁶ As it is written:

“For your sake we face death all day long;
we are considered as sheep to be slaughtered.”^[j]

³⁷ No, in all these things we are more than conquerors through him who loved us. ³⁸ For I am convinced that neither death nor life, neither angels nor demons,^[k] neither the present nor the future, nor any powers, ³⁹ neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

I had a dream the other night. This is the part I debating posting. Then I remembered my own post the other day, admonishing myself to not be chicken. Someone else the same day said they loved to be around me because of how I handle my mom and the trial. I pointed out it wasn't me handling it...and she said that's the part she loves to be around. That, is what life is about right? Our words, actions pointing to God? I fail miserably at times. I do. Frequently even.

So anyway on to my dream. Thursday was the national day of prayer, and I went to the sanctuary at church fully intending to pray for the country. However, as I was trying to, I finally said, look God, I know you you and I both know what is going on in this country, and that you have this under control. I know this was a day of prayer for that, but I need some help. I BEGGED him to show me that everything was going to be ok. I needed a touch, just something small. I already told you about the medicaid worker, I thought that was it (and it was, just there was more for me!) the night I found out about that, I had this dream.

I'm not sure where I was, but I know I was on my knees, weeping about everything. I opened my eyes, but didn't lift my head, and there were feet in front of me. Blood covered feet. I felt rain hitting my head, but I noticed that it wasn't rain, it was blood. Lots of blood. The was washing over me. I looked up at this point, and saw a face, a face I can't describe because I didn't really see it, but it was Jesus. He placed his hands on my head, and said, this is my burden, not yours.

He swept his arm around, encouraging me to look, and on the other side of him was a bright light, so bright I couldn't see what was behind him, but the overwhelming presence of peace, love and warmth enveloped me. I jumped up and ran, ran into the light, and all I could feel was bright white light...and everything was alright.

Ever since that dream, I have had my peace reaffirmed, that God infact really does have this under control. He does work all things for good, for those who love Him and are called by Him. So while this journey may get a whole lot darker before it is over, I KNOW the light is there. And His name is Abba Father.

the waiting game

One would think after 2 years of this I would be good at the waiting game.

But I'm NOT. If I leave a message, I want a call back, same day.

I know thats sometimes not reasonable, but when people tell you they are willing to help you no matter what, when they ignore my messages it drives me NUTS.

So I will be a pest. I will call again tomorrow.

Its not that big of an issue, I just need the doc to fill out one more piece of paper for mom for the long term care application. Its just one of those "make hay while the sun shines" things, I was on leave this morning already so I could go to the doctor myself.

I really like my doctor. We talked about my nook today, he wants an e reader and we talked about how much I like it, and its not like a screen. He asked me how I was doing and I said "OK" he didnt like that. He said I want an "IM GREAT!" I said, well doc, I am a lot better than I was in January, and considering how fast my mom is declining, I think OK is pretty durned good!

He decided he'd take that for now. And said he could tell the meds helped because I was smiling and laughing at least. :)

Does the Lord Give and Take Away?

I was watching a video of a hard hit area in Alabama, and they had set the video to the Casting Crowns song "Praise you in this Storm"

this was a comment on the video

"So sad...my prayers are with those who lost loved ones. But I don't like this song, never have. "The Lord gives & takes away." That's old testament...the N.T. says, "satan came to kill, steal & to destroy, Jesus came that we would have life and have it more abundantly." My did NOT do this awful thing in Alabama! I will always defend Him!"

It ate at me for a whole day. I believe that scripture is God breathed, and that Jesus coming and dying for us was fulfillment of the Old Testament. If God is anything, he's consistent. He's the same yesterday, today and tomorrow. Yesterday doesn't stop at the cross. The Lord DOES still give and take away. Yes, the accuser comes to steal kill and destroy, and Jesus came so we could have abundant life. But MY God gives me everything I need, and takes away the pain of the path I am on. HIS Joy and peace is given to me, and the pain, suffering and despair he takes. He took my sin, on himself, and gave me life. So don't tell me He doesnt Give and Take away.... anyone else have thoughts on this?

I don't believe in consequences, I believe that my God knows what's coming, and sometimes when I don't understand why things are the way they are, I can still Praise God in the Storm of life because I know HE knows whats going on, and has it under control. Case in point, the slow as molasses medicaid movement...and yesterday I find out that our caseworkers mom was just diagnosed with Alz. I was able to help her in the first steps of her journey, a journey I would be able to stay on if it werent for God taking my burden and giving me the strength.

I debated posting a reply on youtube. Is it the place to get into a spiritual discussion? Sure, why not. I didn't want to start a debate (and so far, I haven't) but it got me thinking. We are supposed to stand up for truth no matter what, right? Even if its hard. Even if its "unpopular".

Isn't that what I tell my kids? Don't I tell them all the time we don't do x, y or z or allow you to watch x, y, or z, or wear x, y or z because it isn't right. It isn't right because God is against it. Even if other people are doing it, watching it or wearing it.

When did the church in American become so CHICKEN! My Jesus over turned tables in the temple because they were not honoring God's holiness, yet we cant get up the gumption to tell people He's alive, much less what they are doing is wrong in his sight. My Jesus wept, bleed, was beaten beyond recognition, took the sin of the world on himself, which made God the Father have to turn away leave him alone, gave US the gift of eternal life, yet we are too scared to hurt peoples "feelings" or be considered "weird". I'm not throwing stones. I'm just as guilty. I want to fit in. I want people to like me. I was afraid to post a response on a website, where people don't even know who I am! I was afraid of what they might "think" of "me". Who cares??! I shouldn't care what they think of me, but what they think of my Father. I even had the lie in my head "they didn't mean what you think they meant, they only meant that God didnt send the tornado to punish people" So. I needed to post the truth.

So this is what I posted. I wrote and rewrote and edited, but finally I clicked send.

I agree that the accuser came to steal, kill and destroy, and that the sin in the world is the root cause of all of our problems. However, I have to disagree that the Lord does not give and take away still. My God does. He gave his life, to take my sin, to give me life. He takes my pain and suffering and gives me joy and peace that can only come from Him and His strength in times of trial. Praise Him the Storm, because His strength will carry you on, even when you cant see it.

It probably wont make a hill of beans difference to the original poster. However, it might make an eternal difference to someone else who stumbles on it...

I just...wow I have no words. We have been waiting on a ruling for awhile now. I left a couple of messages and never heard back, and called back today. She apologized for never getting back with me, but her mom has just been diagnosed with Alzheimer's. wow. I told her I was very sorry to hear that news. It so terrible. She then explained to me why we were stuck. I told her I needed to move to a long term care app, and she said "that's not my department, BUT..." and if I can get the app to her she'll help walk it through. She's moving in with her mom, and was overwhelmed by how much sitters cost. I told her I completely understood. And pointed her to some of the resources I have found in MS. We had a good cry on the phone, and she said she'd do whatever it took to make our path at medicaid easier. Just...WOW. I hate it for her, but she seems to be willing to go above and beyond to help me help my mom.

Update - The Roller Coaster

Thats what it feels like. A roller coaster. Up and down, good and bad, joy and tears.

This past week we decided to stay home in the mornings to make sure mom went to clubhouse, in good shape. Monday was fine. Tuesday, fine. Wed, fine. Thursday...not so much.

I had a big meeting so hubby stayed home with her and took care of the um, troubles. I told him, why do you get her a doctors appointment this afternoon, I will come home, let you go to work and take her in. We'll get her cough checked out and I will see about the paperwork that Medicaid needs for long term care. Long term care doesnt mean placement...it can, but it doesnt have to be. So, he did.

I took her to the doctor that afternoon. Well nurse prac actually, but she is soo kind, and so gentle. I really am loving her. She checked mom out, listened to her lungs again, and then I told her about the paperwork. She said of course. Sat down with us (its a HUGE packet!) and went over it all with me and mom. She's so sweet. We were answering some of the questions, its tough me to admit how bad it really is.

She said, you know she shouldn't be alone, ever right? I said yes, but what am I supposed to do? We can't afford in home help, I cant not work (then where will we live?) and thats the point of this application, to get either an in home waiver or "something else" is what I said. She patted me on the hand and said, I know... and I HATE this disease. I HATE not being able to DO anything. I said, well join the club, and we had that tittery laughter, you know where its laugh or cry? So now I need to get back with mom's medicaid caseworker. Everything seems to take forever, but I know its God's timing.

Prayer need

Last night I noticed that I don't think Mom recognized our youngest daughter. She had this odd look on her face, kinda like "who is that" and "I should know, do I ask or not". I've also noticed her giving our daughter some pretty nasty looks over the last couple of weeks. This is not my mom. My mom loved those girls to pieces. But, it concerns me. I know the stats, sometimes they become violent, but not always. Mom has been compliant the whole time, but I know that as they get more confused and forget people, sometimes they lash out because they don't understand.

I pray protection for my kids every day, anyway, but now I need to add from her. Not that I think she will be mean to them, but she might. Logical thought is gone, as is understanding. Please join with me in extra prayers of protection for the girls, and all of us, even her. We need it.
Thanks,

Its so fast....

The decline. Its so fast. They call this disease the "long goodbye" but it seems to be fast. My mom isnt really there anymore already. She cant do the things that even mentally challenged people can do, like get dressed right or clean up. Its really sad, yet I know there is nothing I can do other than do the best we can.

I've made some progress on paperwork for a facility, yet with life and work its so hard to get everything done. I hope to get the doctors appointment in to get the medicaid long term application filled out this week. I have left messages for her caseworker, but as with everything, its a waiting game.

Jimmy pointed out that it really is like having a 2 or 3 year old again. Only you cant teach her. So the problems are just that, problems, with no resolution to them.

She was sick last week, and I was out of town. She had a psych appointment that morning, but was too sick to go so I had to reschedule it. I like the doctor, but one of the problems with seeing a county doc is well, they are booked 3 months in advance. so she cant get another one till July.

I had to catch a plane to go to Denver, so J had to take her to the nurse prac to get her checked out. Sinus infection was all, but infections can really cause havoc in this disease. She was totally out of it for several days. Still not back to "normal" from it and its been over a week. Bless him, she had an accident at the doctors office, but at least she had depends on. He really is an awesome husband.

Yesterday she was finally able to go back to clubhouse, and seemed to enjoy it. Today I woke her up to get ready and she had two depends on. It made me chuckle, bless her she is trying. But you have to take the used one off, I told her. Oh she said. So we are cleaned up again and she went to put her bra on, but she already had her shirt on. So guess what? yep, over the top. This is a sign of a new stage, and it while it breaks my heart, I under stand what Angie Dickenson said on CNN the other night...you pray that its fast...so they dont have to be like this long. :(

Sun is peaking through!

Thank you, everyone who has prayed. I know you are out there and praying for us, just as I know God has us in his hands. I told you he'd take care of it.

I started calling and emailing contacts for information. During that time, I found out that just a couple of weeks ago MS changed how they calculate medicaid eligiblity. Looking over the numbers, I cant see how she could possibly be denied this time. Reading the requirements, I cant see how she would be denied the insurance part OR the long term care she's going to need pretty soon. From in home help to facility, whatever the doctors deem most appropriate. I found the scoring form and formula for scoring, and based on what I know about her I can't help but think they will probably deem her eligible for 24/7 care.

So its a waiting game now.

She's had two good days since our terrible experience, even talking and recognizing people and participating at church wed night. That's good. I like the good days.

I also like not smelling poo when I walk in the door in the evenings. So thank you God for both!

Came home to a terrible terrible mess

And my sweet husband cleaned it up while I was outside trying to not to puke. Thats enough info, mkay?

But seeing how bad it was, makes me realize that mom doesnt need to be at home alone period. However, I cant do anything about it. I have to work. Jimmy has to work. We have to have a house to live in, and food to eat. God will provide away out of this. I know he will.

However, after much introspection and much prayer tonight, I think its time to call a care home, and see what the admissions process would be like. I am fortunate to know someone who works at a great one, and she's given me some names.

As you know, mom has nothing. no medicaid, and she doesn't qualify for medicare yet. I can only pray that God moves in the situation. I cant. He has to take care of this. He's taken us this far. He loves me, he loves my mom, he loves my family. He will make a way.

Jesus Hold Me NOW!

Long time no blog

We've been in kind of a holding pattern, nothing much new.

I found out all my crazy stuff was stress, and that tiny muscle in my neck was causing the headaches and dizzy spells. Crazy huh? I'm working on that. I found a way to get out of the house to help, painting on canvas at a place in town.

Mom is hanging in there. I've had to get her to start wearing disposable undergarments, because she needs them. I hope this prolongs us having to change any of her routine. Medicaid STILL hasnt ruled on her Nov application. Everything takes so long to do!

My daughter's wonderful understanding (mom has alz) teacher quit two weeks ago. Its been a tough transition for my child. She is the first person in her life to just go away suddenly.

Wow... month has past, and what a crazy month

So I took mom to the doctor, she's hanging in our version of "normal".

Found out her "issues" were b/c she'd been eating chocolate again. I swear. I'm going to have to start pining a note to her like a kindergartener. ALLERGIC TO CHOCOLATE.

My aunt wasn't doing very well so I couldnt take mom to see/stay with her at Christmas. My sweet wonderful awesome hubby said he'd stay home with her and let me take our kids to see my dad and stepmom, grandma and the rest of the family, just after Christmas.

We stayed a few days and the girls had a great time. Like having Christmas all over again.

And we started home. An uneventful trip, until we got about halfway in. 2 1/2 hours from home, 2 1/2 hours from my dad's. The kids needed to use the restroom so we stopped, and while we were walking around the store, I had this terrible attack of dizzy/faintness and nausea. Scared me! I felt terrible, ended up calling my hubby and 911. The EMTs took all of us to the hospital (did I mention I was in nowheresville??! ) Hubby calls the calvary as he puts it, the nearest fam was 45 mins away (bless you sweet cousin, for dropping everything and running!) She came and sat with the kids, while I was checked out and finally diagnosed with inner ear problems and given a shot. Hubby got there ( and my dad!) about the time they were letting me out. Another cousin lived close too and she was there as well. Nice to know you have family that will drop and run for you. :)

Came home, and felt better after a couple of days, and New Years Eve a tornado went over our house. Wow that was scary! But the house was ok, we lost a tree and part of the privacy fence, and it landed on a neighbors shed. But it could have been soooo much worse.

The next weekend we had an ice storm. Yeah thats our weather. Tornados one weekend, ice the next. This whole time I had some "spells" and went back to the doctor who thinks I have inner ear sinus stuff and some stress and anxiety. You think? Naw, what could be stressful about a family, small kids, a mom with EOAD and a tornado a full time job with too many job duties??! He gave me a self depression test, and while I have some signs, his words were "you arent over the edge yet, and coping pretty well" this is coping well? Dang. I'd hate to see not coping well!

Then the next week I had a terrible spell, back to the doc, this time he said I was also having migraines. yeah, thats awesome. So now I carry to scripts in my purse for these "attacks" wow, I totally feel like a southern woman now. ;)

But, the worst part is, now I am scared I'm going to have an attack, be alone and it be really bad. So now I'm having panic attacks. Yeah, 2011 is starting off to be a GREAT year, let me tell you.

I think I figured out whats causing the migraines and dizziness stuff tho, I think its a muscle. I was reading about neck and shoulder muscles and how they can cause the symptoms I'm having...and I have a lot of pain in my right shoulder/neck area, I think from my desk at work. So looks like I'm going back to the doctor with that, and the panic stuff. Its so scary...I hate it.

So far the only things that calms me back down is my hubby, my girls, counting backwards from 100, and quoting scriptures. Like, I lift my eyes unto the hills, where does my help come from?

And you are my strong tower...lifter of my head...all sorts of verses about God's strength, jumbled up, just whatever comes pouring out at the time. The some of my favorite songs come bubbling up... Holy holy holy, is the Lord God Almighty etc. Today I started two new books, crazy love, and Jesus Calling devotional. They are perfect. I found out that when the Hebrews said Holy Holy Holy...that was reference to God's perfection. So when I sing that song, I am calling on his perfection in my time of weakness. Had no idea I was doing that...but now that I do, thats pretty stinkin' amazing.

I had a crazy panic moment in the walmart the other day. I was by myself, and I felt the familiar ear pressure, and was "afraid" I'd get dizzy and puke again. So I started breathing hard. It was all I could do not to shove the cart into the freezer counter and run. Flight of fight in my case is totally flight. But I managed to breath through it..and made it to the checkouts, where of course, the line is 4 people deep. Great. Last think I need is to stand in line. When, all of a sudden, new line opened. Wow...THANKS GOD! You were watching for me then! I wasnt #1, but I was #2, and the lady infront of my had an adorable little girl, about 9 months old. So I started playing with her. yeah, I was the crazy woman in walmart playing with a strangers baby, but it was keeping me from losin' it aight??! Peek a boo etc while the lady was paying for her stuff. Thank you JESUS For that baby. I made it through that one.

I cant keep having these...its frustrating and scary. I found out my church is starting a new thing called "living free" that meets on Tues night. Tomorrow is the first night. I am going, I need some more Jesus to get through this. In my weakness he is strong.

so if you have a good verse, or a good quote, or any tips for panic attacks, do feel free to leave them here or email me. I need 'em.