I’ve avoided this post for a long time. It’s painful. It’s complicated. It’s where my grief first began really. And it’s on my heart to share it with you. It’s a confession of sorts. I struggle with guilt and sorrow over how I fell short for the man I loved when he needed me most. So here it is, my caregiver’s confession and a few of the lessons I’ve learned.
Just because I loved my husband with my whole heart and would’ve done anything to make him feel better physically, spiritually and emotionally didn’t mean I felt equipped in any way to be his caregiver. In fact, being a caregiver was everything I was not. It was not my gift. It was not natural to me. It didn’t bring me joy, although maybe it was supposed to. Truthfully, I didn’t feel strong enough to handle the job and it often showed. It showed when my anguish presented itself as anger, resentment, exasperation, fatigue and general despair. Some days I was able to hide all of that and pretend I was a really good nurse. I’d pretend to be optimistic and patient and ignore the deep lament growing inside of me. Some days I felt like I was the wife he deserved, but most often I felt like I was letting him down. And my new role as caregiver was also making me fall short as a Mom too. I felt God had surely gotten this all wrong.
Lesson 1: Be honest with each other, especially when you’re hurting.
To watch my better half suffer was often more than I could handle. It proved impossible to camouflage my pain so I could be encouraging, loving, healing comfort for his pain. And isn’t that what I was supposed to be for him? In sickness and in health? Usually we suffered through this separately, both afraid to burden the other with any more. This was another layer of loss for each of us because we were partners! We were used to sharing our hearts with one another. We had always shared the burdens of life with one another and held each other up. But this was different. We were afraid to let each other down, so we didn’t talk about it much. Caregiver spouses – this is NOT a good idea. Here’s what happens when you try to stifle grief, which is totally what this was. What happens is an eruption of secondary emotions that are much more painful than the honest to God truth – the real and primary feelings. Please learn from my mistake here. This isn’t for you to carry alone. Odds are good you can’t even carry it together. Let God carry it, but bring it to Him together.
Psalm 55:22 (NASB)
22 Cast [a]your burden upon the Lord and He will sustain you; He will never allow the righteous to [b]be shaken.
If I had just taken his hands, held him, prayed with him, cried in his arms and shared my heart and fears more often, maybe he wouldn’t have felt like such a burden and I wouldn’t have felt like such a failure of a wife. Maybe together we could have realized the real enemy was after both of us. We did this sometimes, but mostly we foolishly suffered alone. To fight as individuals in a marriage that was previously a team was a real tragedy for us. Now I can almost hear a Screwtape Letters type conversation going on about us. I regret this so much.
In hindsight, I believe keeping my pain away from my husband stole even more from him than his illness had already taken. He lost his physical abilities, he lost the provider and physical protector role he once had. I should have allowed him to care for my heart. I should have allowed myself that emotional release. It would’ve been good for me and it would’ve given him an opportunity to comfort me. Instead, I cried in the laundry room and in the shower so he wouldn’t hear or see me. I often detached emotionally, which I now realize must have been horrible for him. I didn’t do it on purpose. I was building walls to protect what I wasn’t prepared to feel. I often appeared emotionless or angry. Not because I was without emotion and not because I was angry at him…but because when your emotional pain is so great, you do everything you can to push it down. Anger, resentment and frustration become defense mechanisms for emotional survival. If the floodgates were allowed to open, I honestly wasn’t sure I could recover.
Later on, we would find people who encouraged us to do work together. Palliative care has the tough job of starting uncomfortable conversations and getting you to face what you just can’t face. I’m grateful for their role. I just wish we had done it all earlier. Eventually we cried together. We talked about how our grief, anger, despair and fear were directed at the disease and the circumstance, not at one another.
Lesson 2: Forgive yourself because God already has.
This is something I’m still working on. In some ways I’m a total hypocrite for telling you to do this, because I’m not there yet either. But I know it’s necessary and important. The rational and smart part of me knows that a sleep-deprived, physically exhausted, overwhelmed, broken-hearted person can not be expected to be a rock star caregiver, no matter how much she loves her husband. The truth is, we do our best, even when our best is pretty terrible. Holding on to guilt when God has already forgiven is pretty self-centered. I’m not suggesting I have this one mastered. Hardly. Do as I say, not as I do. I’ll get there eventually.
Lesson 3: Ask for help. This is not optional.
Asking for help isn’t fun for most. I was terrible at it the first couple years. Out of sheer necessity, I had to humble myself and ask, sometimes beg for help. And you know what? I still couldn’t always find it. We had good insurance at the time. We had a lot of friends. But you can’t ask just anyone to tend to your husband’s health needs, especially when those needs are pretty extensive and physically demanding. And I wanted to spare what dignity he still felt. We had to fight tooth and nail for home health care support. Begging doctors for the help that was needed, fighting with insurance, discovering a large gap in affordable resources – not fun on a normal day, let alone when you’re running on fumes.
Thankfully, I found a friend of a friend of a friend who we were able to hire for occasional help. I had to admit I couldn’t care for him 100% of the time anymore. Not only because I didn’t feel properly trained or capable, but also because my soul longed to have moments where I could just be his wife again. We needed moments where he could simply be my husband. He didn’t want to be my patient, and I didn’t want to be his nurse. We just needed a few moments each week where we could attempt to be the old us. And know what else I needed? I needed an hour or two to get away from all of it. Time to not be responsible for caring for anyone. Not the kids, not my husband, not the house – just time to leave and pretend things were normal. Thank you to those who stepped up to the plate for us in this way. Thank you for what you gave to me, to my husband and to our whole family.
Lesson 4: When someone asks if you are taking care of yourself, refrain from punching them in the throat
If ever there was an extra grace required scenario, this is it. Oh if I had a penny for every time someone said this to me, I could retire today. Well-meaning, loving people who state the obvious and unattainable. Even the caregiver support groups don’t understand this. How in the world do you think a caregiver can take time away from the person they are caring for to attend your support meetings? They can’t. Honestly, what I needed was for someone to just show up at my house to take care of something – anything! Do my dishes, my laundry, visit with my husband so I could nap, take my kids somewhere – DO, don’t talk. But they didn’t know.
They weren’t wrong – I mean, I did need to take care of myself so I could better care for everyone else, they just didn’t know it wasn’t possible. They didn’t know we would give anything to have a moment for “self-care” but we couldn’t steal even half that for ourselves even if we wanted. So we said “thank you” and “I know” and just imagined punching them in the throat. Sometimes that’s what offering extra grace looks like. Smile and love them on the outside and punch them in the throat on the inside. Truth.
Lesson 5: When you don’t think you can do it for one more minute and when you wish it would all end…you’re not terrible, you’re human.
If you have found yourself caring for someone you love in the middle of life-stealing disease, I want to wrap my arms around you so tight. I want to tell you how much I understand and I want to tell you that you aren’t a monster. Satan is a monster. Disease is a monster. You, my dear, are human. I know you don’t feel like it. Maybe you’ve had thoughts praying for God to end it all with death because it would end all of the pain – your love’s and your own. Here is what I’m going to tell you about this. God heals. When it becomes obvious that He isn’t going to heal here in this life, isn’t it normal to want the other kind of healing? The eternal kind? And yet, it feels so wrong because wouldn’t we also give anything to have them back with us?
When I admit this, I feel so guilty. How could I for one millisecond have wished it would end when now I can hardly stand living this life without him in it? I think because I loved him that much and also because I’m so ridiculously human. And so are you. So if you’re having human thoughts that are normal emotions in abnormal circumstances, EXTRA GRACE! God understands the caregiver’s plight. He understands the pain and suffering of the diseased. This wasn’t his plan for us when He created the world. We promptly screwed up our one simple job, obedience, and ruined it all.
Thankfully, He’s a God who loves us like a good, good Father. He loves us so much that he overcame all of the terrible so this wouldn’t be the end of the story. I know I reference this Bible verse often, but it brings me so much comfort. It acknowledges our pain and our struggles and answers with victory over all of it.
John 16:33 (NIV)
33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
If you’re caregiving now and feeling overwhelmed with all of it:
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”
If you think God has some explaining to do because WTH?!:
“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.”
Isaiah 40:31 NLT
Those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.
On the days when you’re just not feeling very kind:
Matthew 25:40 NIV
“Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me”
And when you need to feel safe and strengthened:
Psalm 46:1-3 NIV
1 God is our refuge and strength, an ever-present help in trouble. 2 Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, 3 though its waters roar and foam and the mountains quake with their surging.
Life is hard. Loving is a joy that can certainly hurt. Let me remind you that it is worth it.
I love you, caregivers. Lifting you in prayer and showering you with extra grace. Love on.