Posts Tagged caregiver
I won’t even try to update you on everything – just suffice it to say that I will be trying to keep up with this a little better. It’s sort of irrelevant if anyone reads or not; I need it too! Writing helps me sort out my thoughts and get them all in one place and hopefully on one page.
This has been an exceptionally trying week for me. It started with a horrible wreck. I take those a lot harder since Christopher’s wreck anyway. But this one involved an officer that the whole community has been following. He had been injured trying to break up a bar fight. His neck was broken and he was slowly beginning to regain his mobility. He had therapy at Jim Thorpe where Chris goes and I had spoken with him at a couple of races. He was a very kind man and the community was behind him as he stood and took his first steps recently.But his life ended in the wreck and it hit me very hard.
Then of course the Boston Marathon bombing really got to me too. Who would have ever thought? It certainly adds a new dynamic (and one more reason to run) to the OKC Memorial marathon coming up next week. Plus the huge explosion in Texas.. my emotions were all over the place this week and once again I bottomed out.
It’s really bad when I bottom out because I go into shut down mode and can’t get my work done. But I began to sort it out this week and realized I am really battling with depression. I think it is common with caregivers; but I still have had to figure out how to function. So I am working on all that….but in the process I really learned something in a totally different arena this week.
I have talked about how I understand the love that held Christ to the cross- it’s the love that keeps the caregiver sort of imprisoned and bound to their loved one. But this week while sorting through some things I learned something else. I was thinking about how relationships have changed since that tragic day in November 2008. I was thinking about how to overcome the loneliness (also common to caregivers); how to battle depression and how to win at this race called life. In the process I was also thinking about Chris and how he can do so very little for himself.
In my thinking I was also thinking about who he was before the accident. Then my mind started to think about how I love this Chris too. Of course he can’t actually do anything for me now – he can’t throw out all those philosophical questions that would keep us up all night drinking coffee and looking for answers! He can’t share his latest lyrics or song with me. He’s not the same Chris – but I still love him.
That’s when I got it. So many times in life we love someone for what they do – not who they are. I loved Chris’ music, his humor, his thinking, etc. But it’s the love for HIM that drives me to care for him day in and day out, through thick and thin. I also thought of all the people who loved him when he was in school at NSU. I know they genuinely “loved” him. But they do not know what to do with him if he can’t do the things he was doing before.
So this made me think about how God loves us – not what we do. Maybe we can write and play songs – perhaps that’s even a gift. No problem – but that’s not what God loves about us…He loves us. He loves past our doing…
Flip Side–do we love God for what He does? Or do we love Him just because we love Him? We can measure many things by what God does especially in our western culture. If we have money,houses and cars; He has blessed us. If we have a good time at church, He “showed up”. If we are spared an inconvenience, or had a close call, He was watching out for us. These are all great “experiences” but are we loving Him solely for what He does? What if He didn’t “do” anymore? If we didn’t feel His presence, had to drive an older car, friends walk away, or we have a wreck? Job faced these things – he lost everything – literally.But he clung to God even in his darkest night. He served God because He is God, not just for what He could do.
I’ve been thinking about this over the last couple of days. I’ve also shared of my trust issues with God because before I felt like that trust had been broken. I thought God was protecting my kids and He let me down. I’m learning that trust, faith and now love have nothing to do with circumstances. Unfortunately we are taught to measure spiritual success by circumstances. Too bad for Job, huh? I want to learn more – I want to love and trust God just because I believe He is there….He already “did” stuff for me He rescued my soul from the clutches of darkness. That’s wonderful – but I’m ready to know more about Him…I want to love Him for WHO He is – not just what He does.
This has been a very trying journey…and it’s not even close to over. I figure I’ll take care of Chris until I can’t anymore then we’ll go to the nursing home together! But I have learned so much during this trial. My faith has been rewritten, love is different and I view many things (like church and friendship) much differently than ever before. I am not thankful that this has happened to my son. But I am thankful that God has continued to reveal Himself to me even as I learn about life in Him from the furnace.
I know I have not written in a while, but that’s just how I am built. When I go into overload mode I shut most things down. I am sure it could be explained as some sort of survival mechanism…if anyone cared to take the time to research it. Really, I’m not too worried about it…I just know that when I am on overload and there are lots of stress factors I tend to shut down. And quite honestly, I don’t care to explain it or define it or even change it right now… there’s not enough energy to worry about it.
Lots has happened since I poured my emotions out here. I really like having the blog as it helps me sort through so many things. I’m sure that’s just the writer coming out in me. But here on the computer screen I can express most of my deepest fears, doubts, concerns, goals, achievements and hopes…and leave them here while I walk away to deal with life as it is right now. Somehow (again unexplainable) that has helped me walk some of this journey.
For my readers (if I have any left!) thanks for “listening” to me whine, gripe, praise and rejoice as I sort through this mess from the furnace. Really, sometimes I just can’t sort through the emotions. There is so much in a day that my mind has to put on hold, or maybe “mute” is a better term for it. And that’s just to get through the day. I can be very happy and rejoicing one minute and thrilled at all Chris is doing (and he’s really starting to do a lot) but then see a picture of him playing the drums and I’m sucked right back into the emotional pit. I miss him so much…
It’s difficult but I am trying to live through whatever I have on my plate today. I’m not even sure if it’s the “right” way to deal with it; but I must only look at what is before me today and try to do something productive with it. Try to push Chris one more step, push myself to get some work done (very thankful for that!), try to keep my chin up in the midst of the fire…you get the idea.
I won’t go into the gruelling details of my day and the emotional roller coaster I ride most of the time. Because that really is just about every second of every day. But I do know that I have to deal with what I see – and – do it in faith. In some ways, most ways, faith can seem very far away and unreachable. You see, even though I already live in the furnace – that does not exempt me from other trials too. For instance, my aunt has just found out that she has cancer. After all these years of ministry – I can’t help but wonder why? A friend has had a brain tumor removed and is struggling to get her life back on track too…I deal with the same sadness and heartache that you do every single day – from the furnace. Sometimes it seems that there is no hope…nothing gets better…until we are home. That’s what my head says. My heart won’t let me stay there too long though.
I really can’t explain what my emotions do when I think about giving up. Oh, you know I have had those moments of wanting to give up now…I’d be a liar if I didn’t admit to them. I still have moments full of despair…times I feel like I’m drowning in every sense of the word…
But I am in good company! Paul said in 2 Corinthians 1: 8 that they were burdened excessively, beyond our strength, so that we despaired even of life…That was Paul? The great apostle whom God used to write 2/3 of the New Testament? And he had real life struggles? wow…And on top of that he admitted it!?! What was wrong with him?
Somehow we have attached weakness to those who admit that they struggle. We forget that to walk in faith can cause a fight! I think sometimes my biggest fight is with myself…struggling to figure out what is wrong with me…trying to figure out if I still believe.
But I always come back to a resounding Yes! There is no place to quit – not for me anyway. I don’t allow my students to say “I can’t” – but in this context I must say I just can’t…. I can’t quit, I can’t give up, I can’t stop fighting, I can’t stop believing, period. I just have to trust that God is a God of His word and He made some statements about Chris — so all I can do is wait. Well, I certainly can’t make God move any faster! lol!
I must deal with what I see today and keep pressing on toward a better day…just hoping, praying, believing…That even though for today – this is just the way it is.. and I have to deal with the today I have right now – that there is a tomorrow out there somewhere. And it will be better…I refuse to believe anything else. Call me crazy – delusional – I don’t care….I will continue to stand in the gap for my son against all odds….it’s just the way it is…
Well, I am not really too sure that I am doing an adequate job of getting it together, but I am trying. I am seriously trying to draw back into my cave and for the most part so far – it’s working and it seems safe! I really need to refocus…but I am not sure how to do that from here. Oh sometimes I feel like I sort of have “it” all together – but that usually lasts for a brief moment! But I have been thinking about a lot of different things and somehow it seems like there is some sort of forward progress in my life…sometimes.
I’ve thought back over the last three (plus) years and this furnace that I am living in. I must say I have seen God provide even through all the adversity. As we have taken each step He has been right there providing. That is not to say that he dumped money into my bank account or anything – but I have generated a small freelance writing business that is doing pretty well. I actually have to work diligently to keep up with it. I have no complaints. My lights are on, there is food in my cabinet, we are clothed and have a vehicle. If you are aware of any parts of this journey – especially early on – you know how amazing all of that is. And of course some people have generously given… some over and over…it’s been amazing really! ….no complaints…
And Chris is still making progress. That is very good, even though it is still so very slow – there is overall improvement each day. But the improvement does not dull the constant nagging pain of knowing who he was and all he had going for him and seeing him like he is now. Nothing erases that. And that’s really what eats at me…day and night. I have to work to stay ahead of it – to keep my mind on scripture and concentrate my effort on embracing hope and faith…and that’s what can make me so tired sometimes! We’ve had these two things (hope and faith) so tied up in things we can see – we forget that they are eternal forces. They are at work outside this realm we can see – working for us toward far better goals than the physical things we can see here…
I’ve also thought a lot about people. I think about people who were large parts of my life – and are no more. People who I admittedly gave too much allegiance to and got burned… part my fault – part theirs. Some who I thought were friends only to never hear from them again. Today I thought back about when we were in the hospital and one such “friend” asked me what I needed. I told her I needed contact with people who cared and could pray for me and with me. She said she would call me every day to encourage me. I have not spoken to her since that day. Sad really…but at least there is no question in my mind now as to where she stands! lol! (you gotta laugh or it will eat you alive! ) I was also under the illusion that coming “home” to Oklahoma would help me reconnect with some of what I thought dear friendships… boy did I have some learning to do! lol!
But on the other side of things I have to think about the good relationships that have developed over the last 3 years. Some were already established and can easily name several true friends who have continued to walk through this with me. Some of them are located in various states – but have found a way to stay connected through this whole journey. For this I am so thankful. And I must also think about the new relationships that He has given me… I have some new precious friends for which I am so thankful… both online and off. I will never make light of true friendships again…precious is the only word to describe them.
So here I am trying to get myself together to face another year of who knows what…knowing that no matter what a day brings (and I don’t take a day for granted anymore either…) He will be there with me. He will carry me through both fire and flood. Holy Spirit will comfort me – if I will sit still long enough to let Him! lol! So I am just thankful. Not for the pain, not even for the journey (honestly, I hate the journey)…but thankful that I am not alone – whether or not I can sense anyone walking with me or not… He is with me – He is my hope… and with that I can go to sleep knowing that He will see me through the night no matter how many times I have to get up with Chris – and He will see me through the day no matter what it brings….
I know it’s been a long time since I shared…anything…with anybody really. But tonight I am just sitting here staring at the computer screen waiting for the clock to get to 11:30 when I can bolus Chris then go to bed. I may actually get 5 hours of sleep tonight – if Chris and my knee let me! I never count on it though. I may go back to bed after I bolus him in the morning and try to catch up since the aid doesn’t come until 11:30 on Wednesday.
So I look at the paragraph and think about how many little phrases have huge stories behind them. Like my knee…a small break in the knee cap – it’s tiny and I would not believe it myself except the doctor showed it to me — more like made me look at it – she kept saying I was in denial…I would probably still deny it (yeah, guess she was right!)…if it wasn’t waking me up at night when I bend it in my sleep. I’ll sleep with the brace on for a few more nights then see if it’s better again…
And of course with a bruised/busted in some way knee cap I cannot run. I can try but the pain is excruciating! I can hobble along for a little bit before it feels like someone stabs the right side of my knee cap with an ice pick! (btw – that is the same feeling I get at night while I am trying to sleep!!) – frustrating since I used running to deal with so much of the stress. Oh well – my emotions are fried so who cares about the stress anymore?
Then there’s the aid situation.. I really cannot go into it – but anyone who has ever needed an in home aid knows the frustrations of trying to find a reliable one! Just trust me that there is a big hairy story behind it!!
But all in all there are some really good things going on right now. My friend is staying with me for a while to help with transferring Chris and all since my knee is busted. (It is really getting better by the day/week… I figure a couple more weeks and I can try to get on the treadmill for a mile or so… we’ll see… it still swells when I am up on it too much – brace or not…) It’s been good having someone around. At least I do not hear only my own voice all day now…I dread her leaving but I know the day will come….
We have been able to get Chris out about 3 or 4 times each week and he is getting so good at getting in and out of the car. One of the places we took him last week and plan to go back is Among Friends. It’s for adults who have disabilities. I was really scared to take him…but he did well and it wasn’t too bad. Just makes me have to admit my son has brain damage…but it’s a safe place.
I really cannot talk about my emotions right now.. not sure what they are doing. I am happy for the progress Chris is making… very happy. But I am also sad and living a grief over the son I have lost..very sad. My emotions totter back and forth until they wear out and I just exist….
I know that taking Chris out is also good for me – and I am trying to add that stimulus for him. (and he’s doing well…) but it is so difficult to see the stares…blank stares…and to hear the silent questions no one has courage enough to ask…struggling to get through doors, into and out of buildings and up ramps that are supposed to be handicapped accessible…the simplest things can become the greatest chore when we are out…by the time we get back I am tired…body, soul and spirit…I guess that’s where I am tonight. And I know all the right scriptures to “say”… they that wait upon the Lord shall renew their strength… so maybe I am not “waiting right” is what my religious mind tells me…but I don’t listen…because I don’t care… I exist.
I am not even sure where faith is in all this either. I know I keep working with Chris, for several reasons:
- I love him
- I will not give up
- he keeps getting better!
- God really did promise… even though I cannot see or feel it…and even though I have my doubts
I’m still mad at HIm (it’s no secret He knows it already! – and He’s big enough to handle my tantrums and my pity parties…) He broke a trust that I guess my religious mind has supposed… that He was watching out for my kids. And it really does leave me in fear – I do not really know if He will watch out for my daughter and grandbabies…and I do not know what I would do if anything happened to any of them…and I do not know where to put that fear…I do not know how to handle it…
Actually, I do not know how to handle a lot of stuff…or maybe I just don’t know how to handle anything anymore. I simply exist.
Well, I have 5 minutes until I can at least start the process of going to bed… should be in bed by about midnight I hope. That gives me 5 hours to be horizontal…then I will wake up and face another day. I’ll take it as it comes and appreciate the little things like the fact that we are still breathing; or that I have food to eat…it’s funny how these sorts of things can change your whole perspective on life. So many of the things I used to put so much stock into seem so trivial now…I feel trivial now…I am hoping that there will be an end someday – and I hope it’s a good one. Until then I just have to keep putting one foot in front of the other one and do whatever my hands find to do….and just know that God is really out there…He exists too….
It was one year ago on July 1 when I brought Chris home. I was a bundle of nerves! I cannot even begin to describe how scared and excited I was that day. It was so good to see him in a home setting again where I knew it would not be so loud and all that. I had no idea how, or if, he would respond to being in a home again.
I was so scared to transfer him and of course back then he was so stiff and had quite a lot of tone. He was also on all sorts of meds! I was either feeding or giving him meds every two hours. That went on for a couple of days til I figured out I could combine the feedings with the meds! duh!
I’ve only “dropped” him twice and those were early on and really minor incidents especially when I compare notes with others who have been caregivers! I laugh now but I was so afraid I would hurt him…he is so vulnerable and helpless…
There were so many things I struggled with and some of the frustration was just trying to go too fast for his head injury! I finally learned how to balance it all out – take advantage of good days, and rest on his worse days…I also got him off all his meds and all he takes are vitamins, tylenol, ibuprofen and claritin! How cool is that!
He’s lost almost all of his tone over the last year except for on some days it will be an issue. He is eating so much more… that was an uphill battle.. but we are still pushing through and still making progress…
I never dreamed when I shakily made that first transfer with him that he’d be doing so much more of it now. He is also awake almost all day long now too. It takes him quite awhile to settle down at night but he eventually gets to sleep around 11.
I have learned so much this last year while working with Chris. In some ways I am more patient…with Him… gently prodding – carefully pushing him on toward recovery…but less patient with nonsense…
I have learned much about my Father’s patience too…and how He desires for all of us to be whole in Him…Andreally over this last three years I have watched God provide.. I have never lacked anything…I may have wanted a thing or two.. but never lacked… I have gone in at night and thought I only have the gas to make it back to town tomorrow. I just packed a bag and figured I’d sleep in Chris’ truck…but gas money always came…I have not had to miss even one meal this whole time…I actually need to miss a few and lost about 10 or 15 pounds now!!!
I’ve watched God restore things I hadn’t even recognized were gone…and I have learned true thanksgiving. I cannot be anything other than thankful from here! I cannot wait until I see what He has in store for Chris’ second year on the home front!!