Attention

The illness can rob your attention. It will slowly steal away your attention to detail, your attention to your marriage, your other children, and life in general. Before you know it your awareness of God and the amazing life he has for you is now clouded by worry, anxiety, and stress.

Your intention was to get up in the morning, get some cleaning done, do a load of laundry, drop the kids off at school and head to work. But, then life happened, illness reared its ugly head and your attention was required elsewhere.

Your days typically go something like this – your child gets sick in the middle of the night, the monitors were beeping all night and you could not get any sleep, your child got another infection and you needed to schedule another appointment with the doctor or you head off to the ER to address some serious concerns.

Yes, life goes on but your attention that is needed to complete the daily tasks of folding laundry, preparing dinner, paying the bills, and spending quality time with your spouse and other children cannot go unnoticed.

Over the years you find yourself wanting to use the illness as a crutch or an excuse for you not to participate in life. You stand back and quietly fade into the background. Instead of going to church you stay home in bed. Instead of going out as a family you stay home and veg in front of the TV. Instead of helping out in your son’s classroom you make up an excuse so that you do not have to be around other people.

Before the illness you had many interests. You were active in sports, engaged in various committees, and volunteered at your local church. Now, the time it takes to do other things has created a dis-ease in your soul. I used to feel like I had a right to not want to participate in life because of the weight of caring for Gabrielle.

But when I would turn my attention towards God, when I would take my focus off of the annoying and frustrating tasks of my caregiving role and get quiet with Him, I would hear him gently whisper to me …I have given you life, a wonderful life! Walk with me and see the wonders in life that I have for you.  

Let God show you the wonderment of life. Let Him reveal the many blessings that He has for you on this journey. Let Him restore to you the joyous moments of surviving and thriving in the midst of the medical chaos that is surrounding you. Let God free you from the mental burdens and take one day at a time with him. 

Open the Door

Oftentimes, people will find themselves in the role of a caregiver unexpectedly. Their child is suddenly diagnosed with a terminal illness or their spouse has an accident and becomes disabled in some way. They receive a phone call from a sibling who says mom has ALS and we need to put her in a home.

Situations happen and you now find yourself on a different path. You find yourself trying to figure out how you are going to care for your loved one and still care for yourself and your family.

In the beginning you will feel overwhelmed with all of the decisions that need to be made, medicines to take, doctors appointments, tests, therapies. Your caregiver senses are heightened. You soon realize the weight and stress on your emotions have become almost unbearable and have brought you to a place where you are operating out of fear and anxiety.

Your mind stays on autopilot in a constant fight or flight mentality. While these emotions are necessary at times I would encourage you not to linger there too long.

One reason we do not embrace our life challenges is that it is hard to imagine that God would want us to actually go through all of the pain, anguish, and loss. We cannot see how physical disease, disability, or mental illness can be worth the effort that it takes to go through. We stand at the door afraid to touch it let alone open it and walk through. Just the thought of walking through into the unknown of a life changing moment catches our breath.

How do we trust God in all of this?

Plant a seed of faith. It is God who designed all of this and he is asking you to take his hand and walk with him.

How do we know that God will be there in the dark unknown?

Plant a seed of strength and courage. Open the door to God. Trust that God is in control. Trust that He absolutely loves you, adores you, and cares deeply for you and your loved one.

How can we feel his presence in a season of illness?

Sow the seed of meditating and reading God’s word. This will strengthen your faith with each challenge you encounter.

Open the door to the season of a caregiver. Yes, it can be hard, frustrating, aggravating, and anxiety ridden. But, it can also be a season of simplicity, perseverance, strength, courage, hope, peace, compassion, blessing and so much more.  Most importantly, it can be a season of love in a whole new way.

Take a moment to breathe. See what this season of a caregiver can bring. Through seeds of faith you can cultivate a life of beauty out of the ashes of lost hopes and dreams.

Open the door, walk through, and enjoy the journey.

Organizing : The PHR (Personal “Healing” Record)

Every step you take to become a better caregiver on the outside opens the door to a spiritual healing on the inside. Organizing and managing their personal health information, creating a circle of care team for them, working with the medical staff within your home, creating a medication or feeding schedule; all of these steps are great action items to take that will help you feel more confident in caring for them.

What about the healing on the inside? What about the emotional healing between you and our Heavenly Father? Being a caregiver involves so many emotions at one time. You are happy that they survived the surgery but you are scared to death to bring them home and now have to learn how to use a catheter on them. You are thankful to God that He gave you a beautiful baby girl but are now angry with Him because He has not miraculously healed her like you have prayed. 

Before, you trusted Him with your life; you were willing to follow Him anywhere. Now, you do not know where you are going. You feel nothing but fear, anxiety, and sadness. You pray, practically pleading with Him to cure your precious angel and yet you hear nothing. You feel nothing.

Before, you could talk to anyone about God. You had no problem sharing about His amazing love and how wonderful He is. Now, you are not even sure if He is real or not. You do not even know if He is even listening to your heart wrenching prayers.

There is a lot of emotional baggage that comes with being a caregiver. I have dealt with feelings of unworthiness, shame, anger, embarrassment, resentment. I would feel unlovable and undeserving of a “good” life almost as if I was being punished. My head knew these thoughts were not real but my heart, the heart of a mama who so deeply loves her child, was so wounded.

Where was God? How could I find him? How could I feel His loving presence once again?

Well, honestly, it took time. It took time for me to talk with him, pray with him, forgive him, and finally thank him.

Talking with Him meant that I had to stop being angry enough to at least have a conversation with him. Sometimes, I would be so angry that I could not even look to him, let alone pray to him. My heart would be silent. My anger would just swirl around the “good Christian girl” that I was. I was raised in a loving Christian home. I went to church. I prayed and attended Bible studies, even led some. How could He allow this? How dare He?

Praying with Him became the next step. As soon as I let go of the anger I sought His face. In order for me to seek His face I needed to pray. Prayer opened the line of communication between me and my Heavenly Father. Prayer brought me to my knees.

Forgiveness was the next step. I don’t say this flippantly, I say this in the most reverent way possible. A relationship with Christ is a two way street. I had to ask for forgiveness for myself but I also had to forgive God for taking me down this path; a path that was not of my own choosing. It became a path that I would lovingly, willingly, and thankfully choose again. When I humbly forgave God I opened the door to my heart once again. I opened the door to Christ, His love, His healing, and His amazing grace!

Thankfulness brought me into God’s presence. Thankfulness brought a healing to my wounded heart, and a binding of my tattered soul. Thankfulness brought me to a place where I began to look for God in the darkness of illness and disability. I came to the place where I stopped asking why and starting trusting in his way. I started trusting in Him again. That simple step transformed me from a worried and anxious caregiver to a hopeful and faithful friend walking hand in hand with my Savior.  

Loving: The Caregiver

You can enjoy your life as a caregiver!
It will require a strong commitment, a positive attitude, and a compassionate heart.  Over time you will find a certain rhythm to the seasons of change, stability, and grief.  While scary at first, this rhythm, a balancing act of sorts, will open the door to confidence, hope, security, and peace of mind; and all the while you are learning to become their best advocate and their best caregiver.

I have found, over the 15 years of being a caregiver to our daughter, Gabrielle, learning to love her involved so many layers. When we brought her home from the hospital we did not have a tutorial on how to be a “caregiver”. There was no caregiver class 101 for us to take. Transitioning from our role as parents and my own role as her mama, to now physically, emotionally and medically caring for her 24/7, required a whole new mindset. My love for her was always there; just as warm, intense, and wonderfully amazing as it was for our other children. But, with her there were so many layers between us that I had to learn how to bridge the gap.

Layers of Loving
Layer of her illness and disability
There was learning to look past her illness and disability and see her in a new light. I had to look past her inabilities, not being able to walk, talk, or care for herself and see that she still was my beautiful daughter.

Layer of the daily grind
There is something to be said about learning to love the daily grind of physically caring for your loved one 24/7. It takes a strong commitment to get up each day and medically care for them; from the daily tasks of bathing, dressing, and feeding to the weekly tasks of working with them on therapy exercises or teaching them a new way to communicate.

Layer of the Logistics
There was learning to love the process of organizing, planning, and managing our daughter’s health and wellness and all of the logistics that came with it.

Layer of the Caregiver
There was learning how to love myself in this new role as her caregiver. In some respects it is an easy job to do. In other respects it is the hardest thing to get over.

As a caregiver it is easy to be hard on yourself.  You have feelings of guilt, shame, fear, and anxiety. It is easy to feel stuck in the unknown of the why’s, how’s, and when’s of it all.

Why did this happen?
How did this happen?
When will it end?

Remember, the love of a caregiver is the gentle reflection of the love in their heart. If you look closely you will see that the love of their heart is a reflection of Christ’s love.  And that love is something to behold.

For the mama who loves the child who cannot understand, who may have multiple disabilities and medical diagnosis’, who may never see their child reach their first birthday; the love that it takes to care for those afflicted with chronic illness, terminal disease, and disability is a sweet, sweet love mirrored by and instilled in you by the Lord Jesus Christ.

The journey will be long and challenging but it does not have to be full of guilt, shame, and pain. Remember to nurture your space just as much as you nurture theirs.  Love yourself just as much as you love them.

As you realize the importance of loving yourself you will find it easier to make time for yourself.  As you do that, you’ll find that a healthy you, a healthy caregiver, will turn into a healthy loved-one.  The two go hand in hand!