Posts Tagged caregivers

Dear Case Manager, I’m Important Too

Please forgive the rant – or hit the “back” button if you are prone to being offended! I’ve had my son at home and been his full-time caregiver now for over 6 years. I’ve had good aides, bad aides and aides that have become friends. I’ve had nurses that were punctual, knowledgeable, and genuinely cared for my son; and some who were just wanting a paycheck. We’ve had case managers from both ends of the spectrum as well.

I know I’m a little OCD and a Type A , high-strung, anxious person, but keeping appointments and being punctual are important ways for people to communicate worth. There was a post recently that made light of being punctual and said we shouldn’t be so stiff and everyone just needs to relax. There is not a fiber of my being that agrees with that viewpoint. First, let me say there are times when situations are totally out of a person’s control – a flat tire on the way to work, a kid who pukes all over you or your car, your car won’t start and a host of other emergencies that can come up to hinder a punctual arrival. But as a general rule, punctuality sends the message that the other participants are important and what is to be discussed is of value. I won’t even go into how much it costs a company monetarily when people are late and delay important meetings. So maybe I have a problem – but these things are important to me.

So… my son’s case manager usually schedules his appointment for the month ahead. I’ve finally stopped writing them down because every month she calls that day and reschedules it, usually more than once. That’s what happened this week. Last time she was here she scheduled an appointment with us for Monday. But when Monday came she was ill – and I do get that, so she rescheduled. I actually appreciate that since I try to protect Chris from being exposed to viruses and such. So she said she would come today – Wednesday. I’m like, cool.

I had wanted to take Chris to the grocery store this afternoon while the weather was sunny and nice, but decided we could opt for our normal schedule and I can go tomorrow instead. About half an hour before she was supposed to be here – she texts and told me her “other Norman” appointment had rescheduled – how does my Friday look? Just pissed me off.

Way to tell us we don’t matter.

Even though she probably does not intend us to feel this way, we were not worth the 12 mile drive from a neighboring town today. She doesn’t acknowledge that I changed up my schedule to accommodate her. I guess she doesn’t think about things like that. By ignoring the fact that we have things to do too – she says what is on my agenda is worthless and unimportant; but what is on her agenda is important.

How is what I do not important? First of all, much of my time is devoted to caring for my son. And I have just taken a full-time position with a company, plus have a few writing clients I provide content for. Plus, I have just started working on some of my own writing projects….but the fact that it is actually a juggling act to reschedule for her – is not important.

Maybe she does not understand all that it takes to take Chris out – but of course she is going to ask if I am working on re-socializing him and getting him out more. She may not understand how crammed full our schedule is and what it takes to puree his meals, feed him each and every bite, get him in the standing frame, do range of motion exercises, make sure he wears his splints…..etc. etc. etc. And of course figuring out how to work in between is a challenge. None of this is a complaint – just the way it is here. And her total disregard of our schedule and what we do in a day all has to be rearranged to coincide with her visit just gets to me after awhile. But if I choose to no longer accommodate – I’m the bad apple.

Please, if you work with others – on any level from providing home health services, to a professional level – value them. Our actions should always tell others that their position, thoughts, work, or whatever is just as important as yours. We should be communicating to others that they have value – and are worth out time.

Earlier this week I shared a post in my Devotions for Caregivers blog. I talked about how I got up and wanted God to speak to me quickly because I had a lot to do. But we don’t feel that way about other relationships. I mentioned how I don’t tell a doctor or nurse to hurry; I expect and appreciate them taking time to be thorough. But how many times do I act like this case manager when it comes to my communication with Him? How many mornings do I get up and think, I’ll study, pray or read later today, or tomorrow, or over the weekend?

While I think God is unlike me in that He patiently waits to be gracious to us (Isaiah 30:18). He longingly waits for us to take time to enter His presence, and when I schedule and reschedule – I am communicating to Him that time with Him is not worth my effort. So today – instead of spending my time fretting and being mad that the case manager doesn’t value my time – I’ll spend some time repenting for the times I have treated spending time in His presence with the same careless disregard. I’ll be purposefully making time to be with Him.

As for the case manager – I’d like to say that I won’t even bother to write her appointments down on my calendar anymore. But it’s not fair for me to expect God to just be sitting there for whenever I decide to show up- and be frustrated at her for something I do as well. If she comes Friday – I will mention my frustration and we will go from there.

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All in a Day’s Work

Most of the time I feel like a failure and tonight is no different. Once I got home from the hospital and started to get some sense of normal back in place I realized how far behind I am in pretty much every arena. Since stress is one of my major issues (just like every other caregiver0 I figured I better try not to stress over it all. I’m learning that I can only do what I can do in a day and stressing doesn’t get more done. IN most cases, it keeps me from doing more that’s for sure.

Today was a little bit crazy  for me though. I’m feeling a little better but real draggy and I have sent a note to my doc to see if she can reduce my meds a little bit – it’s a really low dose anyway and I think that I can manage the blood pressure with diet and exercise – something I wasn’t doing before that got me in the bind I found myself in. She still has a referral up for me to see the cardiologist – don’t know why – no one seems to care why I have irregular EKGs or fail stress tests — since I don’t have a blockage in my heart… figure I’m good to go – right?

This trip has been very different for me. First of all, I haven’t had health issues for years – but knowing that I had to be okay because I am taking care of someone else really changed up some of the dynamics. But isn’t that one of the caregiver’s biggest issues – we take care of someone else but not ourselves? Or we only take care of ourselves because we are taking care of another…why can’t we see ourselves as important enough to be taken care of to begin with? Is it that we lose our worth or significance in the person we are taking care of? Probably…but we’ll never admit it!

I am more serious though about taking care of myself. I’m pursuing healthier choices in every area of my life. For one thing I’m following what the doc ordered – that alone is a big one for me. I’m also going to go back to taekwondo starting next week. I think it is very therapeutic and the doc told me to find some things other than running (not to exclude running of course) that would be beneficial for reducing or managing stress. Of course it will take some time and I have to start all over – but I’m going to go for my black belt! It’s still stressful because I’ll be taking Chris with me this time – I can’t afford a sitter twice a week – not that and for races. But I think it will help me regain some discipline in my life. It may also help provide a small bit of a social outlet for me – we’ll see.

As for faith – I don’t know what to say. I can’t not believe in God – but boy does my life make no sense at all. It’s a constant struggle to keep my head above water right now. I hear myself tell others all those things I’ve always said – but doubt how relevant they might be…It can be so easy to get caught up using a lot of cliché’s without thinking through what they really mean – and we can do the same with scriptures. I want to get beyond that – but I’m not sure how….

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Maybe I’m Just Lazy

It has definitely been a random day today! I am not even sure where to start with all my crazy thoughts. Tonight was one of the many nights I crashed. Not really depressed, although that has been an issue in the past. I just go into overload mode or something and it’s like I can’t even function. It’s not indicative in any way that the day itself was bad- just maybe too much.

When I get like this (usually later at night) I’m not worth much at all. I don’t feel like doing anything. I can’t get my mind around working – words just don’t come out right – I don’t feel like running or exercising; I pretty much just don’t want to do anything. Tonight I started wondering if I’m just lazy. Maybe I don’t want to work or something. But then I thought back about my day – and all my typical days and talked myself out of it.

Nights like this I feel like I am a huge failure. I feel like I don’t get anything done. I know that this is not true – but it’s how I feel.

I did get a lot done today – just not enough. I’m nearly caught up with my work, between classes in school, and I tutored starting at 7 this morning. Chris sleeps in and I tutor in China and Taiwan. But then there is also all of the stuff I need to do for Chris. I bathe him, get him up, fix him something to eat and then feed him. Then it’s time for stretching, TENS unit, splints or other types of therapeutic activities. And that’s all just by about 11 in the morning. I still have writing to do!

I’m not lazy, I’m a caregiver! Those two really do not go together. Maybe we should classify the term “lazy caregiver” as an oxymoron. Caregiving itself is a full-time job, I have to remember that. But I still have to make a living on top of that. When Chris slept most of the time I had chunks of time to get my work done, thankfully he is awake more and more of the day and evening. But it leaves me less time to work. Not a complaint- just fact. I’m trying to figure it all out and adjust.

But it’s nights like these (and I’m having a lot of them lately) where I know I got a lot of beneficial things done, but it fell short of what needed to be done. I keep thinking “I’ll start over tomorrow” but it sure gets old. I’m wishing there was a restart button somewhere!

Sometimes I have to tell myself to be content. Paul said he was content in every state – whether there was abundance or lack etc. I have to find a way to walk in that kind of peace. I’m going to too!

I have to remind myself that I am not the Provider. God is my provider and I have to be content that He will take care of me body, soul and spirit. That’s not an easy task trusting  Him – after all I have to believe that He allowed this to happen to my son. I question over and over. But over the last 6 years I’ve learned to trust Him in the trouble – without assuming He’s going to take me away from it. No matter what is going on it comes down to the question if I am going to fully trust Him or not.

Now I may state it through clinched teeth and white knuckled hands, but it is my choice to continue to trust Him – even on nights like these. I trust He will pick me up and dust me off one more time. So as I retire tonight, I’ll be thinking about His restoring power, His ability to pick me up and put me under His protective covering and offer me His peace. I believe I’ll just rest right there – and once again – start over tomorrow. He made each day new – and His mercies are new with the morning. (You do realize that it is always morning somewhere, right?)

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I Want to Buy My Own Bananas!

Here it is another day’s end and I feel like I’ve totally failed…this is a common thing really. In reality, I am caught up with all my clients presently and my classes don’t start until tomorrow so there’s no way to be behind! But there are so many things I really want to work on like writing my own ebooks, starting my newsletter back up and things like that. The day just gets away from me.

Most nights I feel like I didn’t do enough with Chris too. Today he had a lower day which is very typical of brain injuries. He had a couple of really good days then it’s like his brain has to rest to continue healing. No matter how used to it I am these lower days still bring me down. I try to encourage myself by looking at how far he has come and how much better even his “low” days are. He still ate good and responded – was just tired. It just wears on me that’s all.

Then there’s the aide! Ugh! I have decided to just suck it up and hate every minute of her being here. I figure the problem has to be with me. But it would really be much easier if she just didn’t come I think. She really helps with Chris’ laundry and is starting to learn to feed him. OH, and she loves to run errands — that’s what is driving me crazy!! When do I get to go to the store? I’ve switched back to ordering everything online and I only send her when there is something that simply has to be done. She really does not get that I am in this house 24/7 and I need out! I want to buy my own bananas! lol — and I really don’t want someone buying my shampoo or personal items. So I order online…again!

I’ve tried to explain to her that I really only need the 4 hours of respite I am allowed and that everything else is really secondary. But right now  even if she was comfortable staying with Chris – I’m not. She did a couple of things that just made me scratch my head and wonder what she would do if I was gone. Not bad things but well, just inappropriate. For one when she was feeding Chris he got real tired. He only had a few bites left so he had eaten most of his breakfast shake. I told her he was tired and that’s a sure sign it’s time to quit. She kept feeding him – I just let her struggle trying to get him to eat…I watched closely to make sure that she wasn’t doing anything that was going to hurt him, of course. Then I was in the kitchen and I turned around and caught her thumbing through some books and papers on my kitchen table. She laughed and said, “I’m nosey.” I thought – you’re about to get fired! or Shot! lol

I cannot expect her to understand my situation – but I do wish that aides understood this is my home – not just their “place of work” – She enters after knocking – but without me even going to the door – why do aides do that? I really am trying my best to give it this week before I just say “no more aides.”

tomorrow is another “start over” day for me — I have those a lot it seems. I’m trying to get in bed early and get more sleep as I understand it might help some with depression and overeating. I have got to get a handle on this. No one can do it for me!

It’s these times when I am overwhelmed that God can feel so far away. People are too for that matter – but I’m used to that now. I realize that no one is going to walk my walk for me – just like I cannot walk it for Chris. But I can walk it with him, and I intend to. I also know that God has not abandoned us. He is walking through the furnace with us. No matter how long it has been and no matter if we see an end in sight or not; He continues to walk with me. I have to hold on to that since I am supposing that the rest of my life looks pretty much like this. He has to have a plan; and I do not have to know what it is!

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Just General Craziness

I know I have not blogged in a while. It’s funny, I started the blog to share my journey of how I keep faith in the middle of the furnace. I wanted others (and myself) to know that just because terrible things happen to us along the journey of life does not mean we do not have faith. But in the process I found that it helped me to have a place to put my emotions and then walk away. Then I think the pendulum swung the other way and I did not feel I wanted to be so open with my thoughts, feelings and emotions – none of which seemed too safe at times.

Some of that is due to one part of the journey that we as caregivers always have to deal with; people who we thought were friends and who walk away. And sometimes it is not so much that they desert us as they really do not know what to do with the “new” us and since we cannot be the “way we were” they cannot continue the relationship for whatever reason. I have found that those who wanted to stay connected with me even in this fiery trial have managed to be friends with the new me. Is it different? Yup – way different. Am I different? Yup – way different. But I really do understand.

I know I am the same person. I still like to play games and will still occasionally stay up a little too late playing the Wii just because I enjoy it so much. I still like to hike even though I rarely get to.  I like to kid, to talk, to read, play, sing, to love and to live. It just looks very different from here. But I found some freedom a few weeks back that has really helped me deal with the sort of prison I chose, or found myself in however you want to look at it.

As anyone who follows this sporadic blog knows, I am a runner. My first full marathon is 3 weeks from today! Yay! I had slipped into thinking that I was not allowed a life like others. And on one hand this is very true. I am home most of the time and it is can be difficult planning any sort of outing. But just because it is very difficult – does not mean I cannot do it. So I started getting out more. This can be costly when I have a race planned and family is unavailable…but I can do it! When I started telling myself that I can do what I want – it just takes more work to accomplish – I found a freedom in that somehow.

Anyway – as part of my withdrawal I simply had to find myself. The “new” or different self…And what’s cool – is I actually like myself. I don’t mind hanging out with my weird self. And over these last almost 4 years now I have learned a lot and do not need someone else’s acceptance. I have learned a lot about relationships; some people do not have whatever it takes to walk along someone who lives in a situation like this and that’s okay. It’s a long, painful and unpleasant road and not everyone can walk it with you. Jesus found that out too. The ones He poured Himself into while on earth could not handle the cross He bore.

I can’t say I have settled down  any, but I think in some ways I have become calmer. I have found out that many things in life just don’t matter that much. And other things matter a whole lot! My whole relationship with God is different. Sure I have had some times when I was very angry with Him and let Him know – as if He didn’t already. I guess something I have been thinking about this week helped me find some peace. Right before the wreck Chris was talking a lot about how he was okay with it if God didn’t want him to play the drums anymore. I hated it when he said it – but I did not know why. I know Chris had changed a lot that year before the wreck and I guess this week as I was thinking about some of the things he had said…Chris is okay with God. He made this peace before it all happened. He had already given up his drums and his life. I remember he shared one time that he was just a cup and God could pour out of him any way He desired to because the cup is never in charge of what goes in – or when it comes out. Somehow thinking back about all that helped me find a little piece this week.

I think one of the most difficult things about this journey is that Chris is gone — but he’s here. I have shared before about how I grieve over the loss, but cannot move on because it’s not gone either. It’s a very crazy emotional place to be in. But this week – I think no matter what I just love my son. Even though he is different, he is my son.

Maybe that’s how God feels about the church we see today. It’s dysfunctional (I don’t care what you say!) we haven’t even figured out His intense love for us…how do we expect to get any of the “big” stuff? lol I am finding that’s it’s just fine for me and God to hang out a lot. Is it okay when we can hang out with believers? Sure…but if my relationship with God is dependent on others, I have a stronger relationship with them than I do with Him. I made a lot of mistakes back in my “church-serving” days. My intent was to serve God and I think He was okay with it. But I ended up giving myself to the establishment instead of the Establisher. I’m actually kinda comfortable where all this has landed me right now… it’s not too bad…I know He walks with me..through the floods, and through the fire; not around them – but through them. And you know what’s really crazy? That’s just become okay with me; I couldn’t think of better company in the furnace, in the lion’s den than Him!

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Suck it Up!

Once again I seem at a loss for words. I keep wanting to get my dreamer out…but I am afraid to since I really do not know what to expect. That’s one thing that is turning out to be an essential element in life…dreaming. It’s what is missing with Chris – he has no dreams, no aspirations right now. And since I have no idea when or where or even if everything thing will ever be normal again I really am limited in what I can dream.

Oh there are lots of things going on; good things too. I cannot and would not deny those things. I have had many opportunities especially lately. And I guess if I concentrate real hard I can come up with some dreams inside those boundaries. I have had the opportunity of teaching via skype in Pakistan and now teach in an English school where I have mostly Russian and Brazillian students. Who would have guessed those opportunities would ever occur? I also get to join in services with my friends in Indiana on Sundays – that’s a real blessing…gotta love skype!!

But somehow there can be this major disconnect. My new norms are not normal to everyone else. And even the things we get to do are not done like anyone else. I guess this hits home on days like yesterday. Everyone else jumped in their vehicles and ran to my sister’s house. I planned on going but watched the weather closely. There’s no way I can stand out in rain or cold with Chris and try to get him in the car safely. I did finally get a break in the rain and we headed out. For most rain is not really a difficulty…you just move a little faster going in or coming out of the house. It’s not like that with Chris he moves slowly all the time! And even though he is getting easier and easier to transport – it is such a challenge just to go somewhere.

It’s kind of like I have this choice. I know no one can come and rescue me or make anything better…so I have to decide am I gonna have a pity party and just sit here? or am I going to suck it up and make a difference? I just have to not think about it – just get up and follow Nike’s advice – just do it!

Getting ready to go somewhere is like holding your breath on a thrilling ride at an amusement park. I have to just suck it up and do all it takes. I cannot think about anything – just get it all together and get out the door. Once I do – it’s not usually as bad as I thought. Of course some of this is because I have gotten stronger over the last 18 months and also learned a new way to get Chris out of the car when he doesn’t budge! – that happens mostly when we get home and there is literally no one here to help. Chris is worn out from the trip and offers no assistance!

I guess I kind of figured this out in my finances too. I heard a quote once that said tears will get you sympathy but sweat will bring you success. When I heard that I was even more determined to roll up my sleeves and figure out how to work. God has certainly ordered my steps and right now I’m not doing too badly. My lights are on, food on the table and the rent is paid! Why complain? Once I sucked it up and got busy working and finding work to do online – it all opened up.

My emotions are still all over the place. I have to wonder if they will ever level out. At times I can pretty much turn them off and just perform the tasks I have at hand for the day; but other times they try to get the best of me and drag me down. I cannot bear seeing Chris like this — knowing who he was and all he used to do. It’s like I get bogged down and I’m at a stand still. Grieving the loss – but can’t let go. When I crash like that it sets me to scrambling to find the off button. I like having them off more than on… it’s less distracting to my work! lol!

Don’t take me wrong – Chris is progressing and for that I am ever so thankful. He is going very fast for how far out he is.. and he’s doing more every single day. And I just hold my breath from day to day…sorting through emotions and thoughts and wondering what the next day will bring…sometimes what the next moment will bring.

It has been amazing to watch how God has supplied our needs through the last 3 years. I would have never dreamed of all the opportunities He has opened up. And I must say that I am curious as to how it will continue to unfold. I have so many ideas of things I want to do so that I am not just working for the other guys. (not that I mind!)

I know I am pretty much rambling… welcome to my head! lol! All in a nut shell I guess I’m trying to say that there comes a time in a tragic situation where you just have to suck it up and make the best of whatever you’ve got. But that never means you’ve given up hope. EAch day I face adverse circumstances and all sorts of trying choices that must be made on behalf of someone who cannot tell me what they want or need…so since he is still breathing and there is still life in his being.. I just keep hoping. Do I battle with thoughts that he will never come back? Yep – constantly. Do I believe that there is a chance Chris can come out of this…absolutely! But it’s not faithless to deal with what you see today.

So I will keep sucking it up – and pressing into one more day to see what it brings for us. Maybe one day – it will be very different. And maybe it won’t. But I will always have hope. Faith, hope and love….these three remain.

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Keeping My Head Above Water…mostly…

It’s just so back and forth for me still. Chris is doing really well, and that always helps me – well mostly. I think it really helps but then I get overwhelmed because I’m not sure how to get him to moving. I really believe that the bruise is gone – and that’s what we were waiting on. But now to figure out how to get everything moving again – turning all those switches on…I don’t know how yet. I am ordering some more equipment tomorrow that will hopefully help a lot…but who knows?

It is so easy for me to get bogged down in the moment…whatever it has brought to the table. I can get overwhelmed by Chris’ condition, financial decisions (or juggling!), and keeping my own spiritual sanity. And honestly, the changes I see in myself can really scare me sometimes…just between you and me…

I am not sure I can exactly explain what I am feeling, but I am so wanting to know God on such a different level…in a different way than what the church has always presented…I think there’s more. And while I feel abandonded by the church (which a normal thing among caregivers I’ve found…sad) I don’t think that has anything to do with the changes.

For one thing, I have been thinking about our Bible heroes. And what I am thinking is that we read stories about them and most of the time it is one or two stories. Perhaps the ones who give more detail span even a few years. But we don’t have their whole life stories – just an isolated incident or two. But they lived whole lives. They bore children, worked the ground, saved money, helped the poor, had jobs, learned a trade…they did not build big ministries – thier ministries developed as they lived out their lives before Him…

I think instead of being so “ministry minded” that we build a system that actually excludes God – we should just live with Him…and let His love touch lives as we walk through life. I’m not sure what to do from here – but I know I gotta be different, less complicated. Faith is simple – I’m the one who makes it complex…and I want to learn to live in the simplicity that is in Christ…

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Did Something!

Well, it may not be much but I started a broadcast for caregivers yesterday. It will be geared totally toward them and the rest of the world doesn’t have to “get it.” Of course – they can “get it” if they want to.. but in my experience so far – most don’t want to get out of their little comfortable boxes to find out what our worlds are really like. There are some exceptions for which I am thankful…for sure!

I think it really wears on me though – I get so tired of people trying to get me to go  to church. They have no idea how totally not feasible that is. Chris is not real alert most mornings to begin with  – and by 7 at night he’s pretty tired. (especially the days I push him more)

I spoke with a friend in another state this morning and that was one of her main concerns have you found a church home?  I tried to keep back the laugh and nicely comment about not being able to get out much…that I cannot take Chris yet…her heart was right and no offense was taken…and I appreciate her concern.. but wouldn’t a better question be do you get time to fellowship with God every day? Now that brings with it a little conviction too… I like that one.

I had this strange illusion that I was coming home to Oklahoma and all my friends would be glad to see me… I had one friend come once and then I had lots send messages through Ronella that they are going to call sometime… I sure am glad I am not waiting on them to live! lol! I don’t really even care anymore…it was just an illusion.

But yesterday I did have an old friend come by (not that she – or we – are old.. just we’ve known each other for a really long time… ) it was just great to share a cup of coffe and laugh and carry on some real good debates about the interpretation of scriptures! I hugged her twice and told her it was great for her to stop by! She lives in another state…but I hope to see her again soon!!

DOn’t get me wrong -I’m not complaining by any means…I just wish the church (we are all the church) could see past the four walls…I looked for a church service to join yesterday morning.. via video… there were lots of churches saying that they were for hurting people… but every single thing revolved around attending their church…Maybe that’s one reason Jesus traveled so much – so we’d figure out that we were supposed to go. Keith Green said it this way Jesus told us to go, it should be the exception if we stay.

I am wanting to go back and study the baby church.. which was more mature than our “maturity”…they came together no doubt. But it was to share what they’d seen God do that week  and to encourage each other to go back out and follow Him again! I want to be found following Hm….and I’m determined to figure it out!

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Gotta Do Something

I can’t even explain what I am feeling right now. The more stories I hear the more my heart hurts. I made a statement on the about section of my blog for caregivers which said. there are a lot of us out there…lately I have met so many. There are so many stories and so many hurting hearts. And many walk alone – I really think people don’t intentionally ignore caregivers, they just are not sure what to do with us… so they do nothing. I am seriously praying about what I can do to minister to this growing group of people in my life.

And if I figure out what to do – then there’s the how! I have thought of a lot of things from books, to broadcasts…more blogs, I don’t know but I just wish I could pick them all up in my heart and make their pain go away even if it’s just for a minute or two. I have lived such  selfish life.. totally unaware of the pain in the world…

I sometimes think that I am the church’s test… maybe caregivers in general are the test! At first when we were in the hospital there were several churches that came by and prayed with and for us – almost one of every denomination. One group came every Thursday and brought bologna sandwiches and prayed for all those who wanted it there in the ICU waiting area. some brought baskets of food and bottled water. These were like Christmas as sometimes they had toothpaste, shampoo or soap. A multitude of nameless people who really made a difference.

But then there’ve been some crazy ones too. Like the one that came to see us at the nursing home and asked what I needed. I replied fellowship. The pastor looked at Chris and told him they would take care of his mom…and I never saw them again. But then there was the church that came every Sunday morning to have Sunday School with the residents and Bro. Cuney who came and sang and played on Tuesday nights twice a month. If you do nursing home services just know that you are making a difference…don’t stop!

Then there’s my friend, Connie, who approached me back when I could attend church on Sunday nights. She has become a friend indeed…But at the same time there’s the church right here in town who came out one time months ago and I haven’t seen them since! I guess I’m really scarey…or something!

I don’t recall Jesus ever being too busy to pray or teach. He never told someone who He was too busy going to synagogue to pray for them, or that He could not teach them as it would interrupt His personal prayer time!

Anyway, I am really wanting to explore what I can do for hurting poeple…there has to be something I can do from here…we’ll see what He and I can come up with!!

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Beauty from Ashes

Well, almost anyway. It’s been a long day. It was a quiet day and I think that may have made it longer. I really don’t like listening to my own voice so much! I’m sure Chris doesn’t either! His first words will probably be “Will you please shut-up?” lol! He doesn’t seem to be too annoyed at me too much. And he’s getting pretty good at being able to show it…like this morning.

It was one of those times I let it get to me; well, we have a schedule to keep you know! But Chris decided he didn’t want to get up… and he literally pulled his arms in so I could not get his shirt on him! I got too frustrated because our schedule is really working so well and we were running just a little behind. I was flustered, especially when his stomach started growling! (Which is a really good sign of improvement!) So I finally tossed the controller on the bed and told him to call me when he was ready to get up! I came in the living room for a few minutes until I could quiet myself down. Then I felt bad for being upset…and glad because he made a choice! – but it was the wrong one! lol! We worked it out and he got up fine in a few minutes, guess he figured it was Sunday!

And there were other improvements along the way today as well… but you can check them out at the new blog I made for him. I am putting updates so many places I finally just started one blog and that’s where all the updates will be from now on! It is simple to find and read. Check it out at

I am working to make my life more productive and simpler at the same time. so far it’s working, at least I think it is! I worry that I am becoming more of a workaholic to give me something to do. But I don’t think I am. I have lots of work, but I am so breaking it up to give Chris the things he needs in a day too. We have a really good routine now – and I finally am nailing good bed time habits. It’s funny how much more you can do when you get organized, isn’t it?

It seems like there’s so much going on even though I am home all the time… I feel so stretched out inside.. you know? I have to work and care for Chris and remember to take care of me in there too.. somehow. Well, I shower, and I eat! Oh yeah – and I run! That oughta do it! I’m busy and have a full schedule but I can still feel so empty sometimes. I think doing the devotional for care givers has helped me a lot. I know I did it to help others but I have to get myself in line before I can write it! And that actually helps me get things in perspective each morning.

Speaking of caregivers…I was really sad this morning when I was in a support group for caregivers and found that all the things I deal with (extreme emotions, loneliness) is all too common…I was glad that we could understand each other…but sad that it happens every where. People can walk with you for a while, but when it goes on for years they bail. I tried to explain that it wasn’t because they don’t care but because they don’t know what to do with us…and over and over the church is mentioned…they really don’t know what to do with people who do not have the ability to come to their church. I’m still trying to remember why I spent all those years going…

One good thing that God is bringing out of the terrible situation is that I am getting to know Him without the filters of the church. We tend to see HIm through church shaped glasses…but He doesn’t really fit in them…And for that I am thankful. I wrote this in my journal this morning:

I still have this intense desire to be with God – to know Him – to know His ways

but now it’s coming out differently.

It’s not a pray-until-you-see-it  or sing-until -He-comes kind of thing

it’s a day by day unfolding of His heart in my daily walk

when I don’t walk with Him – I dont’ see HIm

But when I position myself to see Him

He reveals Himself to me more and more

unfolding slowly…

until my actions are determined by His 

It sounds crazy that I would know Him more in a dungeon experience…in a sort of prison I would encounter His sweet presence.. but then if I have the facts straight His specialty is making beauty from ashes! 

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