Who's Got Your Back?

Have you ever felt like no one really understands? It seems like it hurts most when it's people who are supposed to be helping. For example, last week my son was up for re-certification in the Advantage program. I was sitting at the table with his case manager and the nurse who will be overseeing his case. They are cutting the hours an aide will come to help because they just don't see what needs to be done. They are cutting the aide from 17 hours to something like 6 or 8 per week. On one hand I could care less because I've found working with an aide to be more of a hassle than it's worth - unless you get a good one.

I was dumbfounded at the ignorance of the situation and I sat and just listened to them talk back and forth about the things the aide is and is not allowed to do. While there are some limitations there are plenty of tasks they can help me with, if they want to. Most of them just want a paycheck. I felt so unimportant and defenseless and very unsure of what to say. (Trust me - I've comprised a lengthy list to have on display now - it will not be an issue!)

Even though it seemed like a small thing I just felt like they didn't understand my situation, but they were supposed to. Aren't they on the team of professionals who are helping me be a good, healthy caregiver? And they don't know? It was one of those moments where as a caregiver I felt so overwhelmed, alone, and like I really don't matter. I felt defenseless and wasn't sure what to do. Should I take up for myself? I'm not one for whining - I am one for just doing. I'll move on without them, even though I shouldn't have to.

We advocate for our loved one probably on a daily basis. But who advocates for the caregiver? No one. I see organizations just trying to save a buck - and I'm frugal so I understand that. But they are sitting there talking about where they can make cuts and save - I felt like it was at my expense.

Then I found Psalm 141:8 where David said My eyes are toward You, O God the Lord; In You I take refuge, do not leave me defenseless. I think I could say that God has the caregiver's back. He sees what we go through and He understands us. The trick is letting it all go and letting Him handle it for us. Caregivers are typically more likely to just roll up their sleeves and get busy and then get busier when the going gets tough. But we must take our refuge in Him. The programs designed to help - are not our help. God is our help and He has our back.

Today I will take deep breaths and relax knowing that God has my back.  And I'll make a conscious choice to rest in Him today. Will  you join me?

No Sleeping on the Job!

Sometimes the caregiver is left floundering on their own and sometimes there are organizations or individuals who help them out. There are programs to help pay for aides and supplies that are very beneficial for helping us stay sane. When I have an aide it means I get out a little more to run, or run errands and that is good. There are nurses who come periodically to check my son out and see that he is healthy and being taken care of. Family members often sit with my son so that I can do things I enjoy or escape for a weekend. I am very appreciative of this "village" that helps me out from time to time.

However, I learned a long time back when this caregiving journey first began that my help comes from the Lord. I had no idea of the the types of situations and decisions I would be facing on a daily basis back then, but I knew if I was going to survive I would have to look at Him for my help. I began to meditate on Psalm 121 while we were still living in the ICU waiting room. I stayed there day and night for 3 weeks before we moved to an isolation room on a regular floor where we remained for over 3 months.

A few days into our ICU stay I was in prayer and thought about all the wonderful nurses and doctors who were providing exceptional care for my son. But as I was thinking about what a great job they were doing I also realized that they couldn't help me. They could talk to me, calm me down, try to ease my fears...but they were not my help - only God could under gird me in the time of trouble.

One of my son's friends had loaned me a guitar for the hospital stay and I sat down and put some chords and a melody to Psalm 121. I knew I would have to look to God for my soul's help, for my peace and comfort and that He alone was my true help.  I knew I was in a position to look to Him and only Him. As the last 7 years of caregiving have unfolded, I continue to look to Him for strength, comfort and wisdom as the daily walk continues and I meditate on this psalm often.

I will look to the Lord

Where does my help come from? 

My help comes from the Lord

Who made heaven and earth

He will not allow your foot to slip

He who keeps you will not slumber

Behold, He who keeps Israel 

Will never slumber nor sleep 

It's such a comforting thing for me to know that God's not sleeping on the job! He is always watching over my soul and keeping me safely tucked in His own heart.

Today I will meditate on the fact that He does not rest; but He continuously keeps me and watches over my soul so that I do not faint. My thoughts will be on the truth that He is always on the job and He never even takes a break to rest. And I will rest knowing He is my peace and strength. Will you join me?

If you'd like to see the video I made of the song I wrote after I got in my son's room you can see it on my facebook page here: Psalm 121.

Mind and Heart

Have you ever twisted a dish rag to wring all the water out of it? Have you ever felt like   a wrung out dish rag that's had all the water rung out of it? That describes my last day or two for sure and unfortunately describes the caregiver at the end of all too many days. We talk a lot about the numerous tasks we have to do everyday and how adding one more no matter how small thing can tip the whole boat. Sometimes it tips us physically other times it can tip us emotionally. Either one can be detrimental. But you know what? Because we are caregivers - we just keep going, and going, and going.

My already busy days got messed up by a minor wrist injury that occurred during my taekwondo session last week. Why does it take an act of God and congress to make a doctor's appointment and grab a quick xray? A busy day gets more hurried finding sitters and making arrangements to take care of these little extras. Eventually, I sat down with a cup of coffee and a big "Whew!" and wondered what I needed most. My answer came swiftly: peace.

This morning during my devotion I found myself in John 14. As I am reading through the chapter, I stopped on verse 17. The New Living Translation of this familiar verse reads this way I am leaving you with a gift - peace of mind and heart. And the peace I give isn't like the peace the world gives.So don't be troubled or afraid.  I stopped there to think about all that and let it soak in.

It's interesting that He said peace of mind and heart and that He said don't be troubled or afraid. I think our heads get so full of stuff on any given day that it becomes troubled; and that once our minds become troubled and upset - our hearts become afraid. His peace is enough to calm both. I like that. If we can meditate more on the peace He gives which far surpasses the "peace" the world can give maybe we can crowd out all the hyper thoughts that go through our minds as the day works itself out. I think I'll try that.

Today I will meditate on the peace that comes from knowing Him. I will let His peace rule in my heart and mind. I will try to think about Him and the peace He gives so much it crowds out all the other crazy thoughts. Will you join me.

Tenacity and Attitude

Do you ever wish there was some sort of caregiver's training available? I have found it to be more of a fly-by-the-seat-of-your-pants situation. We learn as we go and become experts on our loved one's condition. I started out pretty timid when it came to advocating for my son. But I learned over the years how to get things done. Perhaps some of the things I learned are not proper, or socially acceptable, but when it comes to getting people off their back ends and doing their job for my son - oh well!

I've always been one who has had a little attitude, but the tenacity and attitude that I've witness develop in myself as a caregiver has surprised me. We not only evolve into this caregiving role, we learn how to handle situations; hopefully with grace. But then there are those times when we know we have to grab the bull by the horns and get things done. I've found that even the quietest, gentlest person can become a bull fighter when needed.

In the Bible, my example is Benaiah. Never heard of him? I'm not surprised. He's only mentioned in two spots and he only gets about two verses. He is mostly unseen, like the caregiver. He most likely spent years training as a warrior and a fighter but all we get is this little glimpse into who he was. Here's what is said about him in 1 Samuel 23:20-21:

Then Benaiah the son of Jehoiada, the son of a valiant man of Kabzeel, who had done mighty deeds, killed the two sons of Ariel of Moab. He also went down and killed a lion in the middle of a pit on a snowy day. He killed an Egyptian, an impressive man. Now the Egyptian had a spear in his hand, but he went down to him with a club and snatched the spear from the Egyptian's hand and killed him with his own spear.

What I noticed first of all is that he ran into the pit to kill the lion. He did not wait on the lion to come out or attack - he ran into the pit. And it was a snowy day which means that footing would be tricky. He did not take an easy route, he saw what he needed to do and got it done. That's the tenacity of  a caregiver!

I find this little mentioned man to be intriguing. He is full of tenacity and attitude. I see caregivers the same way. We are not just sitting idly by and waiting for anything - we know how to get up and get going and get what is needed done. Most of us have most likely taken out a lion or two in our time as caregivers. You know, those situations that roar at you?

Today I am going to think about the changes that God has brought about in my life through caregiving. I will meditate on how it is God who gives me strength for the battle. I will turn my thoughts to the ways He has helped me deal with the situation in a positive way. And I will face today with tenacity and attitude, will you join me?

Behind Before I Begin

Caregivers typically have long lists of things that need to be done every day. If you think about it, they are taking care of another whole person and for many who take care of an individual who is total care it means doing all the basics at least twice every day; once for yourself and once for your loved one. Some mornings we can get up ready to take on the world and get a day's worth of chores done. Other days we can wake up feeling behind before we even get started.

I wonder if Moses ever felt that way. He could be considered a caregiver of sorts. He had millions of people that he was leading across to the Promised Land. They all had to be fed, clothed and cared for. I can't imagine what Moses dealt with on a daily basis. And while he didn't have to meet some of their basic physical needs, they looked to him for direction, sustenance, and guidance. I think what has amazed me about Moses' character was that no matter how rough it got and how crazy the Israelites acted his prayers were full of mercy and love toward them. God even told Moses at one point that He would wipe them out and start over with new people and make another great nation starting with Moses. (Exodus 32) Moses immediately cried out for mercy for his people. I want that kind of heart. I have to ashamedly admit that I would more likely tell God to,  "Go ahead, I'll wait right here!"

But in reality isn't it that deep mercy, concern and care that keeps us at our loved one's side? No matter how rough it becomes we just roll up our sleeves a little further to make things happen. There are so many aspects to caregiving besides taking care of physical needs. Moses wasn't just "in charge" of the Israelites, he was in love with them. He advocated on their behalf numerous times. I don't think we are really much different. No matter how difficult it gets, the caregiver is not looking to meet their own needs but those of the one for whom they are caring.

Well you know what? God cares for us, for you and me the caregiver. 1 Peter 5:7 encourages us to Cast all your cares on Him, for He cares for you. I think there are a couple of ways to look at the phrase He cares for you. On one hand He cares for or takes care of us much like we do our loved one. And on the other hand is the perspective that says He cares for you  meaning He can do all the caring and you won't have to. We can relax as we remember that He is in control. He's got the caregiver's back and He will take care of us and do the caring for us when we need Him to.

Today I will let anxiety go. I will meditate on the truth that He cares for me as much as (or more than) I care for my loved one. I'll think about how God is my caregiver. I'll turn my thought to how much He loves me and I will let Him do the caring for me today.  Will you join me?

Search Me O God

When my son was first injured and we were living in the hospital, I knew I had to find a way to get adequate exercise so I took up running. I thought it was an inexpensive sport that I could virtually do anywhere. It's been sort of a lifeline for me over the years. Running has become what I do to deal with the difficulty of caregiving. It helps me physically but it also helps me beat depression and clears my brain. It's really about the only thing I do, and the only reason I get out. 

Yesterday, I ran my 16th half marathon. I proudly added my finisher's medal to my overloaded rack on the wall. But I had something happen during my race that had to do with caregiving. As I neared mile 5 of the course there was a drumline playing. It totally caught me off guard. My son was the drum caption and the center snare for his college drumline before his accident. Seeing a drumline live brought back a flood of memories and I collapsed in tears. Eventually, I gathered myself and continued down the course to finish the race.

Things can be so much more than what we see and we never know what a person is dealing with on the inside. In Psalm 139, David talks about how God sees our insides. He knows our comings and our goings. Sometimes people are scared to see that deeply into another person; and sometimes we are too scared to let them look. But God sees past our fears, our emotions and the walls we build to keep others out. He sees what makes us tick. And He still hangs around!

I encourage you to take time to read this psalm today and think about how intimately God knows you. David says in the last two verses:

Search me O God and know my heart,

Try me and know my anxious thoughts;

And see if there be any hurtful way in me, 

And lead me in the way everlasting.

Our hearts are safe with God and He knows and understands everything we feel. He knows what makes us tick and He's not afraid to be close to us.

Today as I meditate on how He knows my thoughts, I will think about His closeness. My thoughts will be on His ever abiding presence and the fact that He is not afraid to continue to hang around even through life's storms. I'll think about how He loves me in the midst of the hurt and difficulties. And I will relax and let Him search my heart. He is safe, He cares. He loves.

Reachin' for those Bootstraps!

Did you ever hear the saying pull yourself up by your own bootstraps? In essence, it means to grab hold and get yourself out of where you are. For the caregiver there are many days we feel like we have to pull ourselves up out of the fog that surrounds us. Because we can be socially isolated, it can be difficult to find the encouragement we need on those days when life weighs in too heavily. On these days we may find ourselves trying to find our proverbial bootstraps so we can pull ourselves up enough to function. We don't always have another choice.

Some days I find myself reaching for those bootstraps to get my attitude and outlook to a point where I can face the day. That doesn't count making it through the day, just facing it can wear us out at times. Where is your go-to spot? What does your bootstrap look like? My bootstraps (what I use to get out of the caregiver's fog) is usually Psalms. I've always enjoyed the Psalms because David and the other writers are so upfront and honest with their feelings. They don't sugar coat it but instead they lay it out there like they see it at the time.

Today my thoughts go to Psalm 13 where the psalmist empties his soul by saying:

How long O Lord? Will You forget me forever?

How long will You hide Your face from me?

How long will I take counsel in my soul

Having sorrow in my heart all the day?

How long will my enemy be exalted over me?

We get the picture that David was feeling on the bottom and that he was in a position where he felt he needed to pull himself up by his own bootstraps! He asks God to keep him from being overcome by the enemy and for Him to hear his cries for help. I can pray that a lot of mornings, can't you?

But I love David's style because he never leaves it hanging. He goes right into his own solution - and demonstrates what it looks like to get a good hold on his bootstraps! It might be that he is simply reminding himself of the fact that he has trusted in the Lord's lovingkindness. Then he makes a statement of what he intends to do with that My heart will rejoice in Your salvation. I will sing to the Lord.

It can be easy to focus on the negatives and the heaviness of the load the caregiver carries. But no one can carry it for us, even if we have tons of helpers along the way. We must get to the point where we can declare our part - I will trust. I will rejoice. I will sing. I'm going to find my I will's.

Today I will trust the Lord for strength to face my tasks. I will meditate on His mercy and the truth that He is carrying me and strengthening me for the journey. I will trust in His strength rather than in my own. I will rejoice in His never failing love; and I will sing of His heart which is always turned toward me and never away. Will you join me?