Posts Tagged caregiver’s cave

5 Years Ago Today

Today is July 1st and it marks the anniversary of the day I brought Chris home from Valir Rehab. I have to say I was terrified but determined. Living in the furnace and keeping faith is the theme of this blog, and I must say that over the last 5 years I’ve experienced both. The furnace is still hot and there are challenges to be met everyday, as all caregivers know. But at this point I am happy to report that I have kept the faith and I’m still fighting the fight.

This half a decade has been full of good things, bad things and in between things. Even as I type this post about bringing Chris home I am just emerging from a season overwhelmed by the caregiver’s fog. Honestly, I must say the fight against depression is a daily one, but one I am presently winning. The biggest thing that stands out in my memories of bringing Chris home was how afraid I was. Transfers scared me to death! I would feel myself tense up when I knew it was time to get him up or put him to bed. I can actually chuckle at that now – because he’s come such a long ways. He had so much tone back then that he was stiff as a board. He would stand up easily enough because his body would go rigid. Sitting him down back then was another story because many times we would just be stuck standing there until he was able to loosen up just enough to give me a little bend to work with. Today- he stands up, he pivots and he sits.

March 2011

He’s trying to smile –

Here’s a picture I shared right after I brought him home. He didn’t do much of anything at all back then and he had that brain injury expressionless face. Back then he got up for an hour in the morning and then an hour in the afternoon and he slept most of the time. It’s been a gradual journey but now he gets up around 9 or 10 in the morning and retires between 9:30 and 10 at night. He still gets a short rest time in the afternoon.

Back then I was glad if he ate a tablespoon of food and presently he’s eating 3 small meals a day and I am having to rely on tube feedings less and less.
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Now he has so many expressions that range anywhere from beautiful smiles to looks of disgust or displeasure. I can pretty well guess what he thinks about things by his reactions. He also looks right at you and he can watch an entire TV show or movie if it catches his attention. All I can say is he has come a long way and I just want to share my thankfulness today that he is continuing to improve and I am still hanging in.

I have to say that other than dealing with the situation and the living grief on a daily basis one of the biggest things I had to get over was taking him out in public. I had to get used to the stares. In many ways I still feel like I am intruding into others lives and spaces by taking up so much room in the grocery aisle or booth at a restaurant. But I figure if it’s a problem, then someone else is the one who has to get over it at this point. We no longer live in a cave.

Many things have changed over the last 5 years (almost 7 since the accident) I cannot say I have handled them all well. I’ve fought, screamed, cried and cussed; but I have endured and come out ahead at this point in the game. Holding on to our faith sounds like a good thing to do until it is shaken. I admit mine has been shaken and at times I wanted to give up on it all. But I have always returned. The road has been rocky and I have not been a real good example many times, but today my faith is stronger than ever before. However, it is definitely worth mentioning that for me, faith, has been completely redefined.

In my world, God is not going to come riding in on a white horse to save us and make everything go our way. But He is going to walk it out with us and give us the room to throw a fit now and then. And as ugly as those fits can be – He always has welcoming arms waiting for us to settle down and snuggle up with Him again.

I guess the phrase I would chose to use is I’ve come to be at peace with my situation. Maybe I view it like the 3 Hebrew children viewed the fiery furnace in their day. I know God can deliver me at any point; there’s no doubt He is able. But like Hananiah, Mishael,and Azariah I have to say but if not…..I’m still going to serve Him. And like these three men of great and true faith – I’ve found He walks in the fire with me.

And today – 5 years later – I must say I’m okay with that.

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What a Day Brings

I keep saying that I am going to post to this particular blog every night before bed. My mind is sometimes very full that time of night, even though my body is too tired. For the caregiver there are just tons of things that can go down in a day – and it changes from day to day so you never know quite what sort of mix you are going to get.

Today is crazy already. I tutor ESL using Skype and this morning my first student informed me they had some “urgent meeting” to attend so they canceled class. It’s okay though because I still get paid for the class when there is no advance notice. It just messes with my mind because I scheduled it. I tried to catch up on some research and laundry. I’m learning to make use of those times and do something that I didn’t have time for otherwise. Then my second student didn’t show for about ten minutes. I had just sent the “sorry I missed you” message and they showed up. I asked them if they wanted to finish out the remaining 20 minutes and they did. Then they said they had fallen asleep (it’s 8:30 AM here but 9:30 PM in China). All I can think of is how I get up early enough to juggle changing and feeding Chris while  getting the sleep out of my eyes and stick to my schedule so I can be at the computer on time — and you’re SLEEPING? I get up at 5:30- to get everything done. Thankfully I don’t have real early classes right now – that’s helping me get a bit more sleep.

Then Chris is not feeling too well. O2 is fine but he’s breathing fast. He pulls his legs up a certain way when he is uncomfortable or hurting — he’s doing that. I get stressed because I don’t know what to “fix” to make him better. Then I fall into this huge  do I get him up? Do I let him rest? battle in my mind. Oh how I wish he could tell me something – anything! That way I’d know what to do with him – what to do for him.

And such is my day from 5:30 to 10 — still a long ways to go until I finish up this day and get in the bed tonight at 11:30 or 12. I have so much to do before I get there!

Days that start out this way make it so hard for me to keep my focus. It’s like a rough start opens up the flood gates of negative thoughts and rough memories of what’s gone before. I sometimes long for a “normal” life again. But I’ve become way too accustomed to my cave. I have been able to get out a little bit more the last week or so. I do recognize that I am becoming very content being alone – but I fear I am too content with it. I get really frustrated with what seems to be small things. For instance, I went to a church function Sunday night (yeah – I know and lightening didn’t even strike! lol). I looked through the church until I found the meeting room – that was easy – just no one bothered to say “go this way” or anything. Didn’t bother me but I noted it as interesting. Then I get to my table and my sister says “hi” to someone and says, “you know my sister Jeanie?” The lady said, “Yes, (chuckle) we are Facebook friends.” And kept right on walking. There was no attempt at conversation – no how are you – no go to hell- nothing! I came home and deleted her friendship — no loss we don’t communicate on Facebook either. I actually came home and deleted a lot of people. I figured if we don’t have a relationship even on Facebook what’s the point? These things seem small but when there is no socialization in your life and then that’s the reaction you get – it hits a little harder. And makes me withdraw a little further…Makes me think there is really something wrong with me and God put me in a cave to protect others from me or something! lol

But on a good note – I got a message today from someone who is planning on coming to see us this week. I’m very excited about it. I think the world in general has no clue as to what it is like to be locked away as a caregiver. You’re still equipped with all the emotions and desires of a “real” person – you just have to live it all out from a cave. Oh well – I’m getting used to it — and have settled in. Well, I’m going to go get Chris up and see what the rest of the day brings.. may check back in later.

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