Posts Tagged overwhelmed
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!
Yesterday I commented on how difficult it was to get Chris out and to the fair. Although he is handling the increased activity pretty good, it sure wears me out. This is partly due to the bum knee – that’s getting better. I plan on starting to go for walks in the next couple of days to get it back into the routine. Then maybe running in another couple of weeks. Anyway, whatever the case – it exhausts me to get him out even with help! lol! But it’s good for him and I am sure getting out is good for me too.
We really had a great time at the fair and Chris got to experience lots of different stimuli: smells, music, people, exhibits etc. When we got there we had to find parking and were under the assumption that handicapped parking was free. I had seen it two or three different places and so it was not unfounded! Anyway, I stopped to ask the lady and she told me it was 5 dollars to park no matter what and ushered me on around. So the next guy I stopped to see if I could ask about the parking and he simply pointed to the field and said, “parkin’s out there…” I said I have my son and a wheelchair. Then he shrugged it off and told me “good like finding a handicap spot.” Both of them were very impatient and acted like they just wanted us out of their hair.
We decided to park by the gate and unload the chair and then Chris. Then Pamm would stay there with him while I (the one with the busted knee cap) went to find a parking spot God knows where! So we just stopped right there and unloaded it all! Then there was a very nice man who was leaving and was parked real close to there – he offered us his spot and said he would wait until we got unloaded until he pulled out so we could have it!!! (Can you say “angel”?!)
The ladies at the gate were very friendly and understanding. They also gave us a paper with information about the fair activities and a map. On the map is said beside all the parking areas “free handicap parking.” So we worked our way through a couple of buildings to go over to the admin and see if we could get the 5 dollars back. First of all, I could not get Chris’ chair to the building as the ramp at the end of the sidewalk was blocked by their four-wheelers! I was pretty hot then!!
The buildings were all pretty easy to access as there are ramps, and buttons on some of the doors that hold them open so you can get the chair in. My friend was with me but if she hadn’t been it would have been very difficult because as a general rule, people just ignore you if you’re not like them. I caught a few looks that I interpreted to mean “why would you even come here like that?” But at the same time there were some very helpful people too.
I worried about Chris getting dehydrated and so I gave him some of my coke. He drank it right up too! lol! That was really cool. We were pretty tired after only a couple of hours so headed back to the car. Then we had to figure out where to re-load Chris and the chair as there are no specified loading zones!
Overall it was a pleasant experience – just a very busy one. We were all so tired when we got back home. I was pretty worthless for the night. I cannot expect anyone to care about all that goes into what seems like a simple field trip like that. Most really do not understand and I suppose that’s okay. But when people are staring down their nose at my son and looking at me with disgust like he bothers their “fun time” with a reality I must live with every single day…it just makes the pain go deeper. And it makes me want to stay in the cave where it’s safe.
Maybe next year I will be more prepared for the fight… right now there’s so much going on with home health and just living from one day to the next it gets so tiresome to fight. And it seems sad to me at least that I have to fight for a sense of normalcy that most can just accept as part of their day….trust me – the pain is deep and I do not need strangers’ blank stares and curled up noses to know how not-normal our lives are…The last thing I want to do is have to fight to enjoy a day out! I really do not want to get hard, or bitter or pushy…but I refuse to take this laying down! So move over world – you might as well get used to us messing up your perfect day!
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 www.updatesonchrishampton.blogspot.com
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
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!