Very hard to read...

I'm working with a GP to get my mom into a neurologist. She wanted the records from the mental health group that has been seeing my mom. I went by to request the records, and they told me it would be 7-10 business days. I sweet talked (and cried) a bit and they were able to get them out in less than 24 hours. The reason I was in a hurry, is because the GP could get mom a neuro appointment THIS WEEK (ie before her medicaid is revoked) if I could get her medical records quickly.

I went to pick them up and I made a copy for our files and took a copy to the GP. I didnt get a chance to read them myself until tonight.

I knew about 95% of the stuff b/c I have been to all the visits. They had a psychometrist give mom some cognitive tests, and they had her go back alone for that. This the part that I just read, that was really hard for me.

"Patient was not oriented to time, place or situation. She was unable to provide any of her personal information, including how many children she had or the names of her children. She was unable to recall her maiden name. She started blankly at the examiner when asked questions."

I knew it was bad, but I didnt realize she didnt even know me unless I'm with her.

I'm pretty upset by this...

Tangled Web...

So, if you've been following our navigation of these waters, mom was approved for disability and medicaid, only to have her medicaid revoked.
And I found out that as long as she lives with us, she wont qualify for medicaid. Thats just great. She'll be eligible for medicare in Jan of 2012 (that will be her 24 months on disability date)

Mom's psychiatrist wants mom to see a neurologist. Fat chance with no insurance. They wont even talk to me.

So, our elder attorney told me about a social worker at our university hospital that might could help. I call her. Lovely woman, very kind and helpful. She suggested I call the universities financial assistance program (and come to her caregiver support group next month, and I am soo going).

The financial assistance lady told me to have a GP refer mom to an internist at the university, and then they can send us out the packet to try to get her enrolled in the FAP. The internist there can then refer us to a university neurologist. While all the visits are not covered by the FAP, the diagnostics are, and in the event she needs a hospital stay, that would be covered too.

So, she gave me the number of a doctor in town that understands the university system and the referral and FAP system. So I called them.

They have a sliding scale payment plan, AND had an appointment today. I went ahead and took it b/c I figure it will take awhile to work through the university system.

One thing I liked hearing tho, is that both the social worker and the lady for FAP spoke very highly of the mental health center thats been helping us so far.

So, off to a new GP today, and I'm armed with her history and list of meds. Why does everything have to be so hard?! I know it will work out, I just have to keep plugging along.

The positive side for today: the new meds seem to be helping A LOT.

In the last three days, mom has swept the floor with out prompting, taken a shower without prompting, and brushed her teeth with out prompting. These are things three weeks ago took me pointing out and telling her to, and providing the tools. Praise the Lord for improvements!

New Challenges

This is a messed up system. Even though mom is on disability, she may never be approved for medicaid because she lives with us. Wow. Do the right thing, take care of your loved ones, and no health insurance. That's awesome..makes so much sense. *insert sarcasm here* So we will probably have to wait until Jan of 2012 when she is eligible for medicare to have coverage for her (you have to be on disability for 24 months before you can get on medicare). If there is still a medicare because the Affordable Heath Care Act takes a LOT of money from Medicare starting in 2014 I think to cover the "costs" associated with it. IDK its seriously messed up folks. I know that the entitlement programs are over used, and not working the best, and I know health care is all messed up and needs overhaul, but I'm still not sure what the right answer is.

I talked to the local university hospital system social worker, and she is helping me navigate the university assistance program, so we can at least get in with an internist (can't see a gerontologist who specializes in dementia b/c she isn't old enough yet) and a neurologist. The assistance program covers hospital stays and some diagnostics, but not all the doctor visits.

Dementia is real, and no respecter of person or age, yet the systems in place for us have a rather large gap for people who don't meet the specifications to get help.

On the bright side though, a lady from church bless her, brought four bags of clothing for mom. I had asked some of mom's sunday school class to see if they had some clothes mom might could wear since she had lost a lot of weight over the summer. When the church called me and said there was four bags, I was very excited. However, when we got to church it wasn't just four bags...it was four enormous, huge over stuffed black lawn bags. WOW! I don't think mom has ever had this many clothes! It will take me all day Saturday to go through it and see what all is there. Amazing. She should be very well dressed now ;)

My new found giving up of worry is a great place to be. I love it. I love the fact that by not worrying, so many more good things have happened and will happen. God has this. He'll see us through. :) I was reading a devotional the other day that pointed out that worry is the opposite of faith. OUCH. Yeah, I think thats probably right. Had I read that a month ago, I would have brushed if off with the "yeah maybe, but not MY WORRY - my worry is different" But its not. Worry is the opposite of faith. Period. Its harsh, I know, or it seems harsh. But I understand that now.

New clothes, new hair cut, and mani

Mom had a pretty good week over the last week I think.

The docs tweaked her meds, and I've noticed some improvement. She got a little SSD money so I was able to take her shopping for some new clothes. She needed some. I think she had fun. We went to Walmart first and out to lunch and then JCPenny's. She got a smart new pantsuit and wore it to church on Sunday.

A friend of hers called and took her to get a haircut Monday afternoon. Things like that help so much when you have a f/t job and two kids to run after and get hither and yon to their appointments. I'm greatful for that friend. I think Mom really enjoyed it.

Then she got a mani at the clubhouse. Too cute. So with new clothes, a new 'do and a mani, she feels like a new woman. And with some of the side effects lessened from the meds, I can tell she feels a little better. I've noticed a increase in appetite...that is a great thing.

I think we are headed in the right direction. I spoke to an "elder attorney" ugh I hate that term. Mom's not elderly. But these particular lawyers specialize in handling medicaid/medicare and long term care for people with dementias and other health care issues. Anyway, she was so sweet. (and free for two hours, that I can handle for sure!) and had lots of great ideas and resources for me. It was a good thing that I saw her. As I was leaving...she touched my arm and said "Your mom is so blessed to have you take care of her" From a complete stranger, who had no idea of the guilt I carried for not being able to do more...but those words, were very very needed.

I'm beginning to think I should change the title of this blog...

To "My battle with worry"! y'all seriously. God moves, and gets things working on our lives with mom and taking care of her. I'm all joyful and happy. Then the ball I drop bounces, I catch it and we make it through that- worried a for about 3 hours, but fought it off.

And then. The "great water feature" in the front yard. Seriously? Really? But I didn't worry. Why you say, because have a home warranty still and homeowners insurance. I wasn't worried.

Yeah go me...or so I thought. Contact the home warranty place. No sorry, if its outside in the yard, not covered. Ok, well no biggie still...until husband calls homeowners...and you guessed it not covered.

I'm the planner, the worrier and the researcher. So the whole time he's been on the phone with the two companies...I was googling. I figured out real quick that its not a repair we should take on ourselves. Ok. So I google some more. Find a range of costs for the potential reasons for the water feature...and I don't like what I'm seeing. Old me would assume that it would be the worst, and immediately go into crisis mode with how the heck will we come up with that $$$$.

But I didn't. Instead, I took a deep breath. I asked God for strength. I prayed for him to move. I prayed for him to keep me from worrying. Then I told the devil, its not going to work this TIME. God has this. He can make the United States Congress pass a bill just when I need it to make early onset Alzheimer's a fast track disability claim, he can handle THIS. So back off.

I got in the car and went to the post office and grocery. Guess what song was playing on KLOVE? Casting Crowns: My Saviour Loves, My Saviour Lives...and at this point in the lyric:

My Savior loves, My Savior lives
My Savior’s always there for me
My God: He was, my God; He is
My God is always gonna be

At the point in the song where it just repeats this for 3 or 4 x I think. Wow. Your right. Thanks for that Father, I needed it.

So I'm not worried. Hubby even noticed..."hey, you are handling this much better than you normally do". Yeah. It aint me. Its God.

Will I worry tomorrow? Maybe. But if I do, I hope I remember today.

“Do not be anxious [do not worry] about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.” Phillipians 4:6

What happens when you are stressed to the max?

Well you start dropping balls. I've felt like I've been juggling a lot of balls lately. Sometimes, they felt more like five pointed throwing stars. And when you try to juggle too many balls you start dropping them. I dropped a big one this week. Not a work ball (tho most days those are just batted back across the net to come at me again), not a mom ball, but another ball. An important one. And the old worry idol came back. But this time, instead of 3 months, 3 weeks or 3 days...it was only 3 hours before I fought it back off. And this morning, I was able to pick that particular ball back up and get it in the air again.

To then be knocked back by a work ball and then a health ball. Cause guess what happens when you are trying to do too much and forget yourself? You get sick. So I'm blogging tonight after being in the bed most of the afternoon resting.

But tomorrow is another day, and the balls will still be there, and I'm trying to not juggle them myself, but remember that God has my back, and hes the one juggling.

Tonight, my oldest daughter auditioned for a solo for the first time. And she made science club at school. Those kinds of balls are the most important.

Mom came home from the clubhouse, her day program, with pink nails. LOL someone gave her a good mani. Thats an important ball.

The secret, I think to "keeping it together" is figuring out which balls are the important ones...and which ones, that even if you drop them, they'll bounce, and you can get them back in the air. And which ones that even if they drop, and roll out the door, dont matter at all.

So what goes on in there?

I wonder. I wonder what she thinks about. I know she has some idea something is wrong. I know that not knowing the time or date has to be frustrating. I know shes embarassed by her lack of mental clarity. I know she still tries to cover, by trying to laugh in the right spots, and nod in the right spots. I imagine she's scared.

I wonder whats going on in there when shes with herself. I wish I could "share her brain" for some idea of whats going on.

I see as the depression improves, glimpses of my mom. I'll take the glimpses.

a break through

Not for her. For me. It all started with Beth Moore. Anyone out there love Beth Moore??! Ok maybe it didn't start with Beth Moore. It started with God. He just happened to use Beth Moore to knock me up side the head.

Our church had a simulcast of Living Proof Live. When the tickets went on sale, I bought two. One for me, and one for my mom. But I didn't want to take her. I bought the tickets before I had my "moment" with the doctor. I tried to give hers away. No one wanted it. But a friend of hers wanted me to call her. We talked about taking mom, and I decided to take her with me.

The topic was Kindness. I'm nice and all. But sometimes, I'm not very kind. ouch. Wow. She used Proverbs 31 (again, ouch, perfect woman I am not!) verse 26.

"She speaks with wisdom, and faithful instruction is on her tongue." (NLT)

or with much better umph, King James Version: "She openeth her mouth with wisdom; and in her tongue is the law of kindness."

The law of kindness. We went on to talk about what the law of kindness meant. Its hard to be kind to people you don't think like you. I didn't think my mother liked me very much at the time. But, I decided, I'd work on kindness.

I was so stressed out about my mom, and work, and money. We had used up all of our "cushion" just trying to help take care of her the best we good. I knew looking at the figures, that we'd be in serious trouble by the end of October. I was so stressed out and in self pity I was a wreck. I didn't know I was a wreck, but I was. I felt like God had abandoned me. My mom didn't love me, and we were on the edge of disaster. I didnt realize just how down about it all I was.

Every where I went the answer was No. Can you help me help my mom? No. She's not old enough. She needs to be 60. 65. 62. never under 60. What do you do? I called, I begged, I pleaded, and I tried to turn it over to God, but just never was successful. I thought I was. I guess looking back, part of me didn't think I deserved His help. I mean I knew He was a big God, but there are 6 billion people on the planet, most who are in a lot worse shape than me and my family. Why? Why would help me? He didn't seem to be moving.

Then Sept 26 arrived. The kids were feverish and hubby didnt feel good either. So Mom and I were the only ones to go to church. She sits with her friends, and we usually sit towards the back so the youngest doesnt distract. But this day I was sitting alone. Our preacher preached on breakthroughs. He said he felt like God wanted to move in someones life, but that person wouldn't give it up. I knew that I knew that that was me. I hadn't REALLY given it to God. I didn't REALLY trust him to take care of us. I'm not an in public kind of girl. Normally I wanted trusted friends to pray for me. I never go to the front. I did that day. We have several ministers and prayer warriors down front during our services...I nearly ran to the first open minister. Bless him, I couldn't even tell him want was wrong. I just said over and over that I couldn't do it anymore and I needed God to fix it. He prayed a beautiful prayer over me, and had no idea what was wrong. But he didn't need to know. God did. Then he asked if I would go with a lady that had walked up. She was so sweet...I was able to tell her what was going on. She has a Sister in law with this terrible disease. How about that? God had her in the right place and right time. She helped me form the prayer to really and truly give this burden to God. I felt for the first time that I did. I was lighter. I was filled with the joy that I had lost. I had ZERO worry. ZERO. What a change.

The next Friday Social Security called me and told me that mom had been approved. They said it would be November before she received any funds. They said I'd have to apply for Medicaid.

God had other plans.

That Sunday I went and told the lady what had happened...how fast God moved when I stepped back and quit blocking him. I'm not saying he couldn't do it with out me, but I really think he was waiting on me to realize that he had my back...and to REALLY believe it. Faith. Once I had the faith, it was almost like He said to me, You got it! Good JOB! Now, watch this, and see what I can do.

Tuesday, I received a letter stating she was approved for Medicaid and it was retroactive for three months. I didn't have to reapply or anything. It was just there.

Tuesday night I went back to my bible study. We talked about idolatry, ouch. Idols aren't just "things" but can be people (family) or emotions (worry) sound familiar? God spoke so clearly to me...worry was your idol. You laid that down and came back to me. And look...trust me, I'm taking CARE OF YOU, my child. The Love of God overwhelmed me. We were talking about the love of God, and how we know in our brains that even if each of us was the only human, God still would have sent his son, for just ME. One of the ladies said she had heard a speaker say... the church is the bride of Christ...do you hear that? God loves you so much that he wants you to be Mrs Jesus. Wow.

That Wed I went back and told the pastor what had happened after laying down my worry and how fast, and bold and BIG God was showing up....and the joy, he shared my story with the church. And since then I've had countless people talking about going through similar times of lack of faith, and how I (little ole me) sharing my story helped them. I'm glad God can use it. All things for GOOD! Glory! I cant hardly stand myself these days I've so much joy.

Thursday, less than one week after SSA called me, I received her first funds. Not a lot, but enough to set up her account, take her shopping for some new clothes (which helped her mood a lot).

I'm not perfect. Only Jesus is. I'm not finished, Not till I get to heaven. But if I can just grow a little, in small steps toward him, (or big leaps, in this case) then I'm headed in the right direction. We've still got roadblocks. But now I see them as speed bumps. Because GOD he's got this. He can do a much better job than I ever can. And he loves ME. And he loves my Mom. And he can take better care of her than I can. He will equip me with the ability to take care of her for HIM.

Thank you Jesus, for being who you are and loving me in spite of myself.

An outlet

After reading some great dementia blogs over the last few days, I decided that I would create one myself. I hope it will be encouraging to some who stumble onto it, but mostly what I want to get out of this experience is for me. Yep, I said it. A selfish need. I need to get out the struggles, the ups the downs and the emotions. I hope it helps me deal with it.

I picked the title because thats what it feels like.. A walk in the dark. I just have to keep looking for the cracks...because the cracks and the imperfections, that's what lets the light in.

My mom is 59. Looking back, she started having significant brain function issues about 3 years ago. She was probably having minor issues for years before that. 59. Wow. That's so young. Dementia is supposed to be for "old people" right? Well not always.

I won't lie here. My relationship with my mom has not always been the best. Now that I know the signs and symptoms of early onset dementias, I see that some of those struggles may have been related. I chose to believe that. I chose to believe because it was one of the only ways I could truly let go of past hurt and pain. I needed to do that in order to be a good caregiver and advocate.

In 2008 she quit her job as a PRN nurse, and was in the hospital for a week or so with some stomach issues. She moped around the house for awhile, and we all thought she was depressed. She was unable to care for my youngest daughter anymore, so we had to put her in full time daycare. Shortly after that, I put my oldest daughter in after school care at the same daycare. She went and stayed with her sister for a month or so, and then decided she wanted to come back home, and try to work again. That was January of 2009. 2009 is when it all came to light. During the first half of the year I thought she was just following some of her "old habits" and I had a lot of anger and irritation.

I found out during this time she hadn't paid her car note in nearly three months. We saved it from repossession . Then I found out she hadnt had car insurance in 6 months. We disabled the car so she couldn't drive it.

She got a job right off. LPNs are in demand and all. She worked for two weeks. Why? "she wasnt a good fit" she got another job. Got lost in the traffic circle trying to get there. I had to leave work to go and help her get though it. Odd, I thought. She was "let go" after 3 weeks because she "wasnt a good fit" rinse and repeat two more jobs.

At the fourth, and final job, in July of 2009, her supervisor called me. Talk about a phone conversation you dont want to hear.

her: something is wrong.

me: what?

her: she comes to work the wrong times, she mixes up meds, she doesnt know date/day/time, you should take her to have her checked out. tell them I said "shes a danger to herself and others"

We talked a lot more, but thats all I remember.

So I took her to a local hospital, and they kept her for a week, and ran all sorts of tests. Did I mention she didnt have health insurance? yeah that bites. Catholic Charities stepped in and helped. I love nuns. They are so SWEET. And the one that runs the catholic hospital here, let me tell you she is a force to be reckoned with! So, as I was saying, mom had all sorts of tests. They tested her from one end to the other. They found nothing, or so they told me. I was told she was severely depressed, and the depression caused the dementia.

So, with no health insurance, no job, and no assets for her, we tried our best to help her. I found an income based therapist, I took leave from work to take her to therapy. We got her antidepressant filled. My, it was expensive. After a month, I took her to my GP and had him give her a different (less expensive) antidepressant. She got no better. It was terrible. She moped around, didn't speak to me, slept a lot.

In January, we decided something HAD to be done. But what do you do with no assets? Even though my husband and I have good, stable jobs, we are by no means "well off". So he found the regional mental health organization, and sweet talked them into seeing mom for free. What a blessing. Unfortunately, they are the county facility...so they are busy. We got an appointment with the psychiatrist in February. I explained her history, and what had happened since July. He changed her meds, added a different one, and the agency provided her meds. I applied for medicaid and disablity for her. When the paperwork came back, they wanted more information. However, mom hid it from me. I didn't see it until it was too late. They told me I had to re apply. We decided to get a post office box to prevent that. Before I could, the Deepwater Horizon exploded, and I was reassigned to the coast for nearly two months. During this time, she had a couple more visits with the psychiatrist, where he tweaked medicines, trying to improve the depression. Nothing worked.

I finally had time to get the post office box and reapplied for help in July 2010.

Mom was worsening...and her doctor wanted us to see a psychologist, and have some mental tests done. He decided this was warranted when I told him about her not being able to use the microwave.

She literally did nothing all day. She sat on the couch and watched TV. Didn't fold clothes, didn't wash dishes...she just sat.

We saw the psychologist, and he said she had true dementia, but wanted her to have some tests so we could help her disability case. Listening to her answer the questions was heartbreaking. She couldn't remember how long she'd been married, how long shed been divorced, where she went to high school, if shed ever been to college. She couldn't remember the day, the week or the time.

After the tests were done, I found out that her IQ was 20 points below normal. Her sequencing abilities are gone. She cant count, she cant fathom the time or day. She doesn't remember when she last showered. He said he would be shocked if she wasn't approved for disability.

Honestly, based on her past behavior, I never really truly believed that she had a serious problem until this day. This day marked a change in me. A journey started that day that continues. More about that in a separate post.

She was losing weight. A lot of weight. She didn't remember to eat if I didn't remind her. She didn't get out of bed until we left for work. She's always been good at avoidance and denial, that still shows up in spades. I was so worried, but what could I do? She has no assets, I have no extra funds, I can't quit work, I'm in the middle of the biggest environmental disaster the state has ever seen. We sell her car for the payoff.

I found out that the regional mental health program has a free 5 hour a day program with transportation, that provides lunch. I signed her up. Took her to visit. Its not quite adult "day care" but mentally challenged people go there for interaction and a "job" whether its sweeping the floor or passing out napkins at lunch. She seems to enjoy it. At least shes out of the house about 6 hours a day. She started going to the girls ball games again. Smiled every once in awhile.

She still sits, with a sad/mad look on her face a lot. But not as much. And she interacts with us more. The doctors changed some of her meds, and I think it might be helping. Time will tell. But its a crack...and a crack lets in the light.

2 weeks ago we were finally approved for disability. Thank goodness.