When the Caregiver Needs a Caregiver

Have you ever felt terribly alone and hopeless? I think those feelings come with the caregiving package as a general rule and perhaps everyone has felt them at one time or another. But when stuff starts to pile up on you it can make an already difficult situation even harder to deal with. The aide doesn't come in, the van broke down, or you, the caregiver doesn't feel well. Any of these can make for difficult days but then there are times they all happen at the same time. Even though we'd like to we just can't give up. What would we give up to? Where would we go? Despair can easily set in when situations are overwhelming. But one look at our loved one and we remember why we are doing this "job" to begin with. Somehow they help us keep it in perspective.

We can think of their vulnerability, their needs and just the fact that we love them and want to protect them and it helps us adjust our own attitude. That's when we seem to reach down a little further and dig out a better attitude and strength we didn't even know we had to face one more day. Are there ever days when you wonder if someone would have that kind of stick-to-it-iveness for you? Maybe we wonder that but we don't have time to dwell there - there's too much to get done to spend time thinking about that.

I'm thinking that God is the only one who is really sticking to it for the caregiver. We get weary, people who help us get weary - but God never gets weary. Some days I can feel like the energizer bunny and I keep going and going. Other days, I wind down and it takes all my energy and strength to just get out of the bed in the morning. God never feels that way. As a matter of fact, in Isaiah 40, verse 28 states that He never gets weary or tired. And the next verse says He gives strength to the weary. Days like today I have to raise my hand and say, "Me! I need strength to make it today!" And He always equips and encourages me from the inside out.

I am amazed at how He can encourage when there is no hope and strengthen when there is no might. So far I haven't seen an intake valve - but He puts it in there somewhere. Knowing He is with me and hasn't abandoned me along the way encourages me to take one more step. This morning I was reading in Psalm 95 where it says we are the people of His pasture and the sheep of His hand. I wondered why the psalmist says people of His pasture and not the sheep of His pasture. Then I thought, it really covers everything. By being the sheep of His hand  puts us in His hands, where we are near His heart. And the people of His pasture puts us where our needs are met- we are well taken care of by the Master Caregiver.

Caregivers need to be reminded that as much care and love we put into taking care of our loved ones - God matches it in taking care of us. He watches us more closely and covers us more fully. I take comfort in the fact that He is my caregiver today. And for today - I can rest in that.

Today as I care for my son - I will look at each act of kindness and love and think about how God does that for me. My thoughts will be on His tender, loving care for me as I care for His child. And I will rest content in His arms as a small sheep trusts and relies on the shepherd. Will you join me?

Over the last year I had some of my own health problems and was even in the hospital for a few days. It was amazing how many people stepped up to help with my son during that time. You know all too well how miserable it can be to not feel well. It brings a wide range of emotions that are difficult to deal with and you can feel so inadequate. My daughter stepped right up to the plate and others drove in from out of town to give her a hand. And then of course, once I was better they were all gone! (smile)

During one visit to the doctor's office she prescribed me some meds for high blood pressure. (Go figure, right?) And she said that they would be good for me since they also helped calm down anxiety. I laughed and said, "You think I'm anxious?" I have always been high strung and being a caregiver hasn't replaced or changed any of that. Actually, I started running as a way to deal with the stress of caregiving and am now training for another marathon. You'd think that would alleviate some anxiety, wouldn't you?

Caregivers have to handle so many different things in a day our thoughts can run a hundred miles an hour or more. We have all the regular daily tasks and sometimes have them organized and manageable. But then let one thing get out of whack and "anxiety" doesn't even come close to describing how we can feel. But it only takes a few seconds of thinking it through and coming up with new strategies and it's all back on an even keel.

There are probably some anxious moments for the caregiver every single day. In Psalm 94:19 the psalmist says: When my anxious thoughts multiply within me, Your consolations delight my soul. Multiply is probably the best word to describe how our crazy thoughts can run away with us on any given day. Explode might be another appropriate way to describe it! But when our questions and thoughts are in "run away" mode we can stop, breathe and consider our true Help. And He will fill us with His peace, hope, comfort and joy.

Today I will work to control my anxiety and work at resting in Him and relying on Him. I will practice self control and not let my thoughts get away from me too quickly before I reel them back in. My thoughts will be on the hope, comfort and peace He provides me so I can make one more day. I will rest in Him today - will you join me?

Can You Find One?

I noticed something different starting with Psalm 144. David changes the tone and starts these last few pieces with praise. Before that, he started several of them with feelings of despair and cries for help. I will be the first to say that when trouble pops up I'm going to go straight to Him first, there's no other refuge or shelter to run to for me. For several psalms David has been asking for the Lord's help and for the last few he shifts his focus to praise.

As caregivers we have good and bad days inside our cave. Our emotions can run very high and swing from one end of the spectrum to the other in a matter of a few minutes. Some situations, like mine, we deal with a living grief. My son is gone, but he's still here. For many, it's not going to get any better and there is no relief in sight. This can make for a rocky emotional situation. If you are like me some days you can handle it fine; other days - we just won't talk about! Suffice it to say that our emotions can be all over the place!

If we, like David, can turn our focus to praising God even in our very difficult situations we can help ourselves out. I will be the first to admit that some days I just don't feel like it. Period. But if I can talk myself in to picking up the guitar and strumming a few chords and maybe singing something like Psalm 61 I can find myself resting in His arms and filled with praise. Psalm 61 is a prayer for help that goes like this:

Hear my cry, O God

Attend unto my prayer

From the ends of the earth will I cry unto You.

When my heart is overwhelmed

Please lead me to the rock

That is higher than I.

For You have been 

A shelter from the storm

A high tower from the enemy.

And just those few phrases can give us a place to start. Sometimes we have to purposefully look for something to praise Him for. Honestly, I've had days where I've been angry with God for not taking me out of the situation. But if I take the time to look hard enough and long enough - there's always  something to praise Him for. When I start my day off with praise it's going to go a lot smoother. 

Sometimes we can get bogged down and have to find a "praise spot" during the middle of the day too. On one hand it can seem difficult to find something in our situations to praise Him for. But I can always start with Psalm 61 and thank Him for always being present, for being a safe refuge to run to when I'm on overload and for sheltering me during the storm.

Today I will purposefully praise Him for just being God. I will turn my thoughts to His ever-abiding presence in my life and for always being there to run to. My meditation will be on how He is that rock that is bigger than me and my situation and I will praise Him. Will you join me?

I am Your Servant

It's too bad that life doesn't have a "hold" button sometimes. Each caregiver has unique circumstances to deal with on a daily basis and it can be overwhelming. We get used to our "new normal" after awhile though. God equipped humans to be able to adjust and move forward. It can still take a long time to be "okay" with a lot of aspects of caregiving though. For instance going out can be a trying but rewarding experience for many. Even when you get used to it there is so much involved in just grabbing a few groceries it's exhausting. Common everyday tasks can be much more complicated for caregivers. Then add to that other life changes like aging parents and it can be overwhelming to say the least. In my case, my parents are aging and even though I am a caregiver for my handicapped son, my role with my parents is slowly evolving into that of a caregiver as well. What can we do when we are overwhelmed?

I know I spend a lot of time in the Psalms, but I just enjoy the way David is so open and honest about his thoughts, feelings and emotions. In Psalm 143 he is crying out for the Lord to hear his cries and in verse 4 he says my spirit is overwhelmed within me; my heart faints within me. Boy, what caregiver hasn't felt that at some time or another? There are days, thankfully not every day, where you just feel like you can't handle one more thing!

The other thing I like about David and the Psalms is that he talks himself out of it. As I read through the rest of Psalm 143 I found some strategies that I can adapt and use myself. They go something like this:

I meditate on Your doings

I stretch out my hands to you

I trust in You

I lift up my soul to You

I take refuge in You

Those statements are all mixed in with his heartfelt prayers for help. But the final statement in the psalm sticks out to me: I am Your servant. I think that with this statement David was handing it all, himself included, back to God to handle. To me it was a statement of total submission to God. Like he's praying and asking God for help, turning his thoughts and heart toward the Lord and then settling it all with a huge sigh and a I am Your servant. Period.

I think that may be the key when we are totally overwhelmed by all that life throws at us; yielding totally to Him. I want God to use everything that happens in my life to draw me closer to Him and to teach me more about Him and His ways. Personally, I don't think God causes these things to happen - they are just part of living; but since they have happened I don't want them to be wasted. I want to grow and learn in the midst of the trials. He has not given up on us and He won't stop working on us.

Today I will meditate on yielding my soul (mind, will and emotions) to Him. I will yield  my control and let God have it all: the good, the bad and the ugly! I will turn my thoughts and my heart to totally trusting Him to turn every situation around for something good. I will trust Him. Will you join me?

Always on His Mind

It's easy to get lost in the shuffle of caregiving, isn't it? There are so many  tasks required to take care of someone else that we can forget to take care of ourselves. Aides, doctors, nurses and other professionals focus on our loved ones, and they should. But we can slowly slide back out of view and be nearly forgotten. It's easy to feel insignificant and small in the scheme of things.

There have been times since I became a caregiver that I would go days without talking to another person. Perhaps this is due to the age of technology. I might text with someone or "chat" via a social media outlet; but I've literally gone days without speaking to someone. Sometimes I miss the art of conversation. I want to hear someone laugh not just type "lol." We need to hear inflections in their voice and see facial expressions. When we don't, we can begin to feel so very alone and wonder if anyone cares, if anyone sees; or if anyone even thinks about us at all.

The good news is that we are always on His mind. As a matter of fact, God told Jeremiah that He knew him before he was formed in his mother's womb. In Jeremiah 1, the Lord spoke to the prophet and said Before I formed you in the womb, I knew you. And before you were born I consecrated you. God knows us intimately even when people don't take the time to get to know us well. He is aware of our darkest, loneliest moments and we are on His mind. We are not forgotten. The truth is that we don't even know what people may be praying for us or thinking about us at any given time. But we can rest assured that God has us on His mind all the time.

David said it this way in Psalm 139 - How precious are Your thoughts about me, O God! They are innumerable! I can't even count them; they outnumber the grains of sand! And when I wake up in the morning You are still with me! (NLT) 

Today I am thankful that He is always with me and I am always on His mind. My meditation today will be of His ever-abiding presence and His continuous thoughts of me! I will rejoice today that He does not forget me or my situation - but I am always on His mind. Will you join me?

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.