What About the Caregiver?

When you become paralyzed, your life changes forever. There is much focus on the newly disabled person (as there should be) because they are sick or hurt or hanging between life and death. The caregivers (husband, parents, children, etc.) are there watching and praying just as hard as everyone else. As you come out of the traumatic stage and your health is once again stable, you are left with your permanent disability. You are left with a new way of life. You are left as a completely different person who has to weave their way through a world that is oh so unfamiliar and strange. The stares, the looks, the questions, the cures, the offers to come and take over your home, the insecurities, and the frustrations leave you struggling to keep your head above the water and start over in this life. You either sink or swim at this point and that will determine how you handle the rest of your life.

But what of those closest to you who have been there through it all? What of those who have bathed you, dressed you, clothed you, and cried alone so they could be strong for you? What of those who could not handle the stress of it all and walk out of your life? What of those who disappoint you with their reaction to your disability? How do we help these loyal loved ones we call our caregivers? After 4 years (and that does absolutely not make me an authority, but a definite witness) of being taken care of by my husband, Jimmy, I have made some observations (I am that analytical type that probably should have been a psychologist) as the disabled one who watched her caregiver very closely. Jimmy wrote the most raw and precious blog sharing his side as the caregiver over on his blog that you just absolutely have to read!

I remember watching Jimmy that first year and I saw that he was struggling greatly in his life. He is a very private man and is very good at talking to me about things, but it wasn’t his speech. The light had gone out of his eyes and I worried for him. I was acutely aware that not only my life had changed, I knew it had changed for my children and for my husband. We had talked about this in the early days, but I don’t think it sunk in for Jimmy as he was so very focused on me and just wanting to make sure that I would not die. He was like a dutiful robot – doing what needed to be done. Taking care of me, taking care of the children, taking care of meals, taking care of laundry, taking care of the church, taking care of me, taking care of the children…..and never did he utter one single word of complaint. I would thank him and try to be so grateful. I would do anything I could physically do to ease his load. I tried to be so cheerful and never dump any of my emotional worries or pain onto him. I was the perpetual Pollyanna always trying to add laughter into our home. He was very sweet and kind in return always asking what I needed. But that light in his eyes…it was gone.

I found that their was a correlation in what I was feeling and what he must also be feeling. The other interesting thing? I think I see it in some characters in the Bible. I think I can sum it up in three things that I believe both the disabled one and the caregiver must come through and to, for the light to be back in those eyes. I think depending on personalities and personal observations, that you will not come to these places at the same time or speed. That is fine. Just be patient with each other and realize that you are both experiencing these things, but you are just on different sides of the coin.

1. Discouragement

In the story of Job, we find that his wife told him to just go ahead and curse God and die. Don’t be too hard on her. Remember that she also lost their wealth and it was her children that died. Then….her husband got very ill and I am sure she took on that caregiver role. She did not know what else to do for him in his suffering and so she just wanted him to curse the God that had allowed this and just die and be out of his misery. Discouragement can cause you to act and say things you would never say in normal times and I am quite sure that she felt very ashamed later for saying this to Job. Obviously, I suffered with discouragement. It is very hard to be so helpless and to be taken to the level of a dependent baby. It is the most humiliating experience to be so completely dependent on someone to take care of your most basic needs. But Jimmy was discouraged also. I don’t even think he realized it at first. He was so hard on himself when he would get my clothes on backwards, or bump me into something as he pushed my wheelchair. He would beat himself up for transferring me crooked or if I would cry out in pain (which was never his fault at all) he would apologize over and over. I would always try to assure him that it was all fine, but the discouragement was taking its toll. He felt so extremely helpless in his own way. I could not help myself and had to depend on him, but he could not help me get better and he felt like he had failed to protect me as my knight in shining armor.

2. Despair

In the story of Lazarus getting sick and then dying, we see that Mary and Martha did not know what to do for him so they sent for Jesus. Jesus did not arrive before Lazarus died, and you see Mary and Martha both saying to Jesus, “Lord, if you had have been here, Lazarus would not have died!!” They were not saying this just to have something to talk about. These two sisters were in the depths of despair. Lazarus was very sick, and they could not help him enough so they sent to Jesus who could help him. But then, Jesus did not get there on time and Lazarus died!! Can you imagine the despair as they watched Lazarus struggling to breath? They would take turns watching him, taking care of him, looking anxiously out the window to see if Jesus was there yet, watching Lazarus struggle through to the last breathe, and Jesus never made it. Can you imagine the despair that filled their souls as they watched the last ray of hope taken away with his last breath?

I have felt that despair. I felt it the day my therapist told me that this was as good as it would ever get. I felt it in my own body as I struggled to do the simplest tasks. Everyone cheers you on, and says all kinds of beautiful and encouraging things about walking and such, but you know it in your own heart. Outside of these dead legs getting a miracle and being resurrected again like Lazarus, they just aren’t going to work. You smile….through your despair. But, the caregiver shares these same feelings of despair. The hopes and dreams of their loved one being like they once were has died for them also. They not only have the despair of their loss, but they feel they have to shoulder that burden alone. If they were to talk about their loss, it would seem trivial compared to the one who has been injured. Physically, that is true. But emotionally, the pain is just as deep for them as it is for the one who has been hurt. They don’t get much attention though and if they aren’t aware, they will almost feel a jealousy and anger towards the disabled one. It is not that they no longer care, but they just feel invisible at times and like they aren’t noticed for their own suffering. This can lead to a helpless and lonely place called despair – “Here is how I feel and I can do nothing about it”. This is really a dangerous and scary place in a relationship because the emotions are so terribly deep and raw and neither one know how to communicate it.

If the disabled person speaks about it, they feel they are being whiny and complaining and don’t want to discourage or make the caretaker feel they are ungrateful. If the caretaker speaks up about it, he feels that he is being trite and overly dramatic. It is a scary place to be for both involved and I firmly believe that this is the point that many marriages with disabilities fall apart. The disabled feel they have it worse and the caretaker feel that they have it worse and it becomes a competition between them and drives a wedge in their relationship. Isn’t selfishness what destroys most relationships anyway? This is selfishness on both parts, but it is so fused with emotion and hurt that it is hard to identify it as the root problem.

3. Dependency

I know this is a blog about the caregiver, but I am not talking about me being dependent on Jimmy (although I still am in some areas). This dependency is a dependency on Jesus Christ. When you feel such depths of discouragement and despair, you either learn to turn on each other, or turn to the Lord. Like I said, this comes at different speeds for some than others and you just have to be patient. I hate feeling like I am a burden to someone and so I decided very early on not to take all of my emotions out on Jimmy. I felt he already had so much to deal with that I just couldn’t unload every thought I had on him. So, I unloaded on the Lord. Everything. Every thought, every emotion, every fear. If I felt consumed in my mind with something, then I would talk to Jimmy about it. This was good and bad. It made him feel like I didn’t have any struggles and then he felt more like a failure because he was struggling. It was good because I had to depend on Jesus and not a man. I am glad for that because my man is 100% man and he will fail me. If I held him up to be my constant rescuer, and he failed, then where would I be? He is free to be a man…..to succeed or fail….and I am free to just love him. Because of the depths of the daily struggles, that never stop, I had to learn early to turn to the Lord so that I could face the next day of reality. Jimmy did not come to this place as quick because he did not even realize the depths of his own struggles.

I will never forget the day we had an amazing talk. It all came out. I told him that I most definitely did struggle but that the Lord had helped me. I told him that I loved him dearly but that he was not my rock. God was. It really crushed Jimmy but he learned the reality of that statement. I begged him to consider this as our disability and that he must face his own losses and that God would be his rock….not me. I was not to be his inspiration. God was. We both cried that day. We cried together as it humbled us both as we saw the depths of how this was truly affecting our life and marriage. But guess what came out of that talk? That was the first time I saw the light come back in his eyes.

We are no where near being the poster children for marriages with disabilities, but we are committed for life. We will handle what comes together. Jimmy is more than my caregiver. He is my husband with deep love and emotion for his wife. He is my best friend who gets frustrated when He can’t help me like he wants to. He is a man that needs to zone out and take a break from all the emotion at times. He has been injured in his own way, and I have to be his caregiver in those times when he is struggling. I am more than disabled. I am a wife that hates to see her husband hurt. I am a friend that wants to make his day brighter. I am not emotional and need to feel that I am at least in control of my emotions. Just like any ordinary couple, we get on each other’s nerves. We get angry at each other. We get upset over petty things. We argue in front of the kids. We have had to get right with each other before we go and speak. A good marriage takes hard work in any circumstances, and we just have a really big layer added to ours that Satan would love to take to destroy us. We just aren’t going to let him!

Our greatest example in all of this is our Great Shepherd, Jesus Christ. He takes care of all of us. He takes care of the disabled, and He takes care of the caregiver. He says, “Come unto me, all ye that are heavy laden, and I will give you rest.” He never gets discouraged, He never feels despair, He never gets weary of us, and He never needs a break. Actually, He loves that we are so terribly needy and I believe that the caregivers greatest role is that they get to act the most like Jesus in taking care of us. That makes them pretty special, don’t you think?

This has been an incredible journey. In Jimmy’s blog, he describes the roller coaster that you are thrown on….without your permission! There have been many twists and turns, thrilling climbs and terrifying plunges in this caregiver/disabled relationship. One thing we have decided though – we are going on this ride together. Side by side, for better, for worse, in sickness and in health. We have been on it long enough now to know that there is also a lot of wonderful thrills. Life is a ride anyway, so you might as well learn to enjoy it. We close our eyes, hold our breath, and sometimes feel like screaming but when we reach out our hands, we know we are there for each other and we are not alone. We are together, and together is a beautiful word.

How can you practically help the caregiver?

• Give them cards and notes of encouragement.
• Ask how they are doing…not just the one they are taking care of.
• Try to give them a night out if needed. Offer to stay with the one who needs looked after so they can feel that nothing will happen while they are gone.
• Thank them for loving the one they take care of. A little appreciation goes along way.
• If you are the one being taken care of, do what you can to ease their load. It is very easy to become selfish and make it all about you. Try to make home as normal as possible in doing whatever you can do. If you can do nothing at all, then just smile and be pleasant. That alone eases their load. Angry and bitter people make me want to run away too. Don’t add to your caregivers burdens. Try to ease them.
• Pray for them! Pray for their homes and marriages. Pray that the Lord will fight their battles and Satan will have to flee.
• Don’t judge them. They have much on their plates and they don’t need any more drama added to it.
• Did I say encourage them? 🙂 Don’t forget our precious caregivers.

Here is Jimmy’s blogpost: Confessions of a Disability Marriage

More in my Disablilty Series:

Reliving the Memories

What Is Nerve Pain?

All For One and One For All

What Do You Say To & How Do You Help A Newly Paralyzed Person

The Many Faces of Paralysis

Understanding Spasms and Range of Motion Exercises