Always Behind

Just a few weeks ago, my son's case manager came by. She started asking how long each task took and how many times a day it had to be completed. As the list grew longer, I started feeling overwhelmed. I had no idea it takes about 5 hours out of the day just to prepare his food and feed him. I also didn't realize how time-consuming transfers were. I mean, we've got it down to an art and it's MUCH easier than when I first brought him home. But still, an hour or more a day just to keep him dry and move him around? Then there was laundry, talking to various health professionals throughout the week, and tons of other things we didn't even get on her list. I was tired just thinking about it.

I'm starting to wonder if part of the caregiving journey is this feeling of being always behind. No matter what all I DO get accomplished in a day, I feel like I left at least as much undone. It's a daily thing. Maybe I am the only one - but I suspect not.

Feelings of being always behind lead my mind down dark paths of additional feelings of inadequacy, failure, etc. Once my thoughts begin spiraling, somehow everything I ever failed at and every mistake I ever made start surfacing. In just a few minutes I feel like the scum of the earth - lower than worm spit we used to say! But this morning, as my heart began to sink into that abyss, I did something a little different.

As soon as I thought of some shortcoming, mistake, failure or any other negative aspect, I made my mind think of something good that came from it. Then, I thanked God for that. With just a little bit of thought, each instance revealed a positive outcome in me, my circumstances, or whatever. And you know what? I didn't spiral down into the depths of grief or sorrow. I saw each circumstance in a different light when I realized there were positive outcomes even if they seemed as simple as God's grace extended to me, or some lesson I learned through it.

So even though I am "always behind" in my mind - there must be some really good stuff happening in the midst. Today, I will purposefully find gratefulness in the midst of my stress. I will command my thoughts to look past the obvious circumstances and choose to believe He is once again reaching and pressing for that positive outcome in me. My meditations will be grateful ones of His keeping power - His everlasting loving kindness toward me. And with that, I will gratefully trust Him for one more day. Will you join me?

All I Need is One Forever

The caregiver's life is not considered to be normal by most people's standards, because is anything but normal. We do find our new norms and through experimentation find out what works, and does not work for our particular situation; and each one of our situations is totally unique.

While we are all so different in the things we deal with each day, we still share many commonalities. A caregiver's life no matter what can tend to be: hectic, frustrating, endless, tiring, and overall crazy most of the time! (maybe that's just me!)

Our days are definitely not normal. It might be normal for us to keep a bag packed and ready to go in case there's  midnight (or anytime) run to the ER. All our doctor's numbers are on speed dial - and yes there are more than one. We plan our grocery shopping around aides, if we have a good one. We learn how to order everything online - and I mean everything. We also learn to do a lot of medically related tasks that we would have never dreamed of like tube feeding, giving enemas (yes, I said it), administering medicines or even shots, breathing treatments, checking O2 levels and counting respirations. These may be a part of our days- and many people never even think about these types of things, let alone have to do them. And of course, I left a lot out.

So what keeps us together in our own hectic normal? Well, just like each of our normals are different, and we all deal with situations differently because we are still unique individuals, it can vary. What makes it all tick for each of us can also vary from day to day, or even moment to moment. You may find a scripture comforting and peace-giving one day; and only find it frustrating the next. (Maybe that's just me....)

Today what I found comforting is in the last few verses of Psalm 73. Verses 23-26 go like this:

Nevertheless I am continually with You;

You have taken hold of my right hand.

With Your counsel You will guide me,

And afterward receive me to glory.

Whom have I in heaven but You?

And besides You, I desire nothing on earth.

My flesh and my heart may fail,

But God is the strength of my heart 

and my portion forever.

Several things seemed to grab me and soothe me at the same time during my devotions this morning. First, the psalmist says, "I am continually with You." I found that odd, because we usually say that 

He is with us - not that we are with Him. There is comfort in realizing that He is with us - but if I position myself with Him it's gotta be a choice. To know that I'm with God - and He's walking the journey with me and holding my hand...brings peace to my heart.

But I also really heard verses 25 and 26 - Verse 25 to me states that we have that hope of spending eternity with Him - but we also have the desire to be with Him now, on earth. And here on this earth my heart and my flesh may fail....we can get tired; and be tired of being tired and then get tired of that too! But God.....

He is the strength of my heart - He pours His strength into me when I am not sure I can take on one more thing. And it seems one more things just keep coming sometimes. (maybe that's just me too..) He is the strength of my heart - His presence in and with me gives me the courage to keep on going...one step in front of another no matter what responsibilities we face on behalf of our loved ones. And not only is He going pour His strength into our hearts to lift us up - He is my portion forever. I like that He is all I need forever. 

He provides everything we need to survive today; and He'll do it again tomorrow, and the next day, and the next,......and the next...... forever. He won't get tired and leave us stranded. He's our portion - our lot - our inheritance - our strength - forever!

Today I am going to meditate on His strength rather than my lack of strength. I will allow Him to fill me up with all He is. I'm going to turn my thoughts to his forever-ness. He is with me forever. He is my strength forever. He is my God forever. He is my peace forever. There's not a lot of forevers....there's only one. But one forever - is all I need.

At Day's End

Caregiver's tasks are endless and almost every evening I have this sinking feeling like I didn't get enough done. It doesn't matter how much I did get done in a day, I feel like I fell far short of all I needed  to get done. Does anyone else ever feel that way?

We already have enough on our plate just in taking care of another whole person or two. I say this as I not only take care of my son who is total assist, but am shifting into a caregiving role with my parents as well. My son can do absolutely nothing on his own but breathe. I not only have to puree all of his food or blend up shakes to put in his tube, but I also have to take the time to feed him. Each day I bathe him, dress him, get him up, stretch him, stand him, entertain him, etc. It starts early in the morning and goes until late at night. Even when he's in the bed early mornings or late evening he has to be bolused, changed, turned, and kept comfortable. It's my pleasure.

Add to the daily chores of caregiving all the other things that must be done and every single one of us have a full load.  I can't speak for anyone else but I know we all have laundry, dishes, vacuuming, and all sorts of cleaning to do daily. Many caregivers have other children to provide care for or hold down a job. In my situation I work from home as a freelance writer; this can tie up quite a bit of time, especially if I start running behind. I have deadlines I have to meet and I can get pretty stressed out at times. I am learning strategies for keeping up and that it helping some.

Let's just take yesterday for example. I did all my caretaking responsibilities for Chris keeping him, fed, moving and comfortable, providing stimulation and ROM activities plus I completed 3 projects for clients and then went to taekwondo to complete my requirements for belt testing. But when I got home and got my son in bed, all I could think about was how much I had left to do. Even though I did quite a bit for a day- I felt so inadequate at the day's end. This is my typical late night activity. I look back over the day and think about what I did. Most of the time I feel disappointed and like I need to do so much more. It's a vicious cycle.

I turned to the wisdom of King Solomon for some direction and help. In Ecclesiastes 2:20 the wise king says So I turned in despair from hard work. It was not the answer to my search for satisfaction in this life. Interesting, huh? He tried working hard and then he tried hardly working and came to this conclusion he shares in verse 24: So I decided there is nothing better than to enjoy food and drink and to find satisfaction in work. Then I realized that this pleasure is from the hand of God. For who can eat or enjoy anything apart from Him? God gives wisdom, knowledge and joy to those who please Him.

Caregivers do not have life easy no matter what their situation is. It can feel like life has dealt us an unfair blow and we just can't live life like everyone else. But we can be satisfied in our work, and we can be satisfied in our God! I really believe that God is pleased with our caregiving efforts and that we bring Him pleasure because we look like Him. 

Today I am going to smile and give myself a break. Even though I may feel like I always fall short - my efforts are pleasing to Him. I will embrace the truth that He is pleased with my actions as a caregiver and I will relax in Him today. My thoughts will be on how much He does for me - and how He takes care of me (that's a full time job too) and I will allow myself to be content with whatever I can reasonably get done in a day. I will let it all go and let Him be my joy for today. Will you join me?