What every caregiver wants to tell you

Every once in a while I'll jot my thoughts down without any spiritual lesson, no neat bow, as you would, to tie things up. Feel free to act on whatever lesson you learn after reading this blog because there will be none applied. Please know that this is NOT the result of any conversations I've had. I've been mulling some of it over for a while.

Caregiving has been the hardest journey I've faced in my life. It was harder than pregnancy and childbirth. It was harder than parenting has been. It was even harder than maintaining a somewhat happy marriage. (*wink wink*) (I love you honey!)
I joked a few times about needing a book like "Caregiving for Dummies" to walk us through the little ins & outs of our journey. From things like "Call this agency for (this)" down to the simplest of things like "Dasani lemon water is NOT sweet and therefore does not upset the stomach in times when taste buds have changed. It will act as an excellent mucus cutter." There are plenty of other personal hygiene & medical tips for a book like this but perhaps what caregivers would need the most would be the last chapter. It would probably be entitled - Top Ten Things A Caregiver NEEDS You To Know. So with that, entertain me a while.

10. Telling me you send thoughts and prayers is awesome but it's acts of kindness that speak to my soul. Please, don't misunderstand this. A caregiver NEEDS to hear that you're thinking about and/or praying for them. These words WILL strengthen them. BUT if you really want to meet them where they are, make them dinner, rake their yard, set a lunch date, call and just listen. (Without the countless dinners brought by momma & daddy's Sunday School class, we would not have eaten many a lunch or dinner the past few months.)
9. Don't ask how I'm doing if you don't want me to answer honestly or take the time to listen to my reply. Caregivers have little to no reserved energy. NEVER expect them to simply give you an answer to placate to your flippant "How ya doing?" Then once they've expended the little energy they have answering your question, blowing them off hurts more than walking their journey alone. Remember a simple smile or hug says more than your words can at times.
8. Do NOT say anything about my weight. Yes, the truth is I've lost/gained A LOT of weight but I was trying to survive. I'm conscious of it already & you pointing it out is like rubbing salt in the wound. A diet of M&Ms & string cheese is not typical for me. So know I'm working on it now. Thanks.
7. There are times I just can't engage. Please don't take it personally when I can't pick up the phone to talk or find the clarity to text. It's not that I mean to be offensive. It's not that I'm not thankful. I'm not even angry with you. There are times it takes all my strength to breathe. I'll get back to you once I've figured out how to do that again.
6. I feel like I just finished a marathon. I'm exhausted in every way. Yes, I'm sleeping. I'm sleeping a lot. Some of it is time made up for sleepless nights but some of it is attempting to cope. My physical, mental, emotional and spiritual person is the most fatigued I've ever been in my life. Don't expect me to just pull up my boot straps or put my big girl panties on. I don't have the energy to find either right now.
5. I need to get away. Ok, so while we're being honest there are times I don't answer because I need to escape from this place. There are reminders all around me - a dirty house, laundry piled high, my loved one's dishes brought home to wash - that someone I love is gone. I can not be here right now. Not physically, not mentally, not emotionally. I am hiding sometimes.
4. I will randomly burst into tears. The people at the grocery store seem most alarmed by this one. No, I don't need or want you to do anything. No, please don't touch me unless I initiate the contact. I'm going to cry. I'll do it when I'm happy or when I'm sad. I'll do it when I hear that song or smell that smell. I'll do it when I think, "Oh, my loved one is out of (this). I'll pick it up while I'm here at the grocery store." (Personally, for me, making coffee is the worst. I don't drink it, never have. But I learned how to make it for gma at the beginning of our journey. I could never make coffee again & be just fine.)
3. My world just ended. Ya, that sounds a little melodramatic but hear me out. As a caregiver, my life at home stopped x number of weeks/months ago. My whole world has been consumed with providing hands on care and thinking forward to what is needed or needs to be done for my loved one. While everyone else's world kept spinning, mine was paused. This new world I've been living in for (however long) just ended. It's going to take me a while to learn to live in my old world again.
2. I feel lost. For me, every evening is the worst as it was the consistent time frame that I spent caregiving. Don't get me wrong, there were days in the mix and short trips to find out how each day was going too but evenings were our special time together. My routine is now suddenly gone. What am I to do? I know what I can do. I know what I should do. See #4 again.
1. I am trying. I really am. The number one thing you can do as the family member or friend of a caregiver is be patient. Understand that they really don't understand the place that they're in either. They don't know why they're crying....again. They see the sun & they want to get back out into it but they're afraid. They're afraid that moving on with life means forgetting where they've been, what they've learned, the way things smelled, the way her hand felt. Everyday I do a little more. Everyday I cry a little less. But know that this has forever changed who I am. And while I'm grieving,  I'm trying to get to know me again. It's going to take me a little while but I'll rejoin you as soon as I can. For now, though, if you really love me, love me until I can return.

When we could carry her no more

As hard as the past few months have been, this morning was equally as joyful. In giving love & care to gma, there were some sensitive personal things the men in our lives just couldn't do. They wanted to help and they did in every way they could from fixing dinners & doing double duty at home to grocery shopping & football practice runs. But when it came to literal hands on care, it was momma, my aunts, sister, cousins, Ms Kristy, Michelle and myself.
This morning though, this morning it was the men in Mawmaw's life that carried her tent to its final resting place. When God determined that our turn was over, their turn for hands on care began.
From daddy's nights spent on an air mattress so that momma didn't have to be alone to Uncle Randall's alertness & gentleness in loving my own son through the service. From Josh's amazing eulogy and encouragement that both honored gma AND glorified God to Brian's willingness to lead a worship service like few I've been a part of.
Then at the end, we watched with tears of sadness, amazement, and gratitude as those that had been in the shadows for so long took hold and carried gma the rest of the way. Brian, Caleb, Mike, Jeff, Kendall and Brian gently took hold of the simple, beautiful casket and carried her when we could no longer.
But each of these men have not only carried gma for the past 13wks, they have carried each of us as well through their sacrifices, though they may not have realized it at the time. THAT is love.
Gma often reminded us girls of the verses in Ephesians about submission. Today though, I watched as these men lived out the self sacrificing love the next few verses address for everyone to see.
These amazing men are our protectors, our best friends, our shoulders to cry on, our embrace when we can't take one more step. They smile with us, love with us, cry with us, grieve with us. They will continue to carry us.
For each of them, I could never be thankful enough.

Grief is not a bandaid

To be quite honest with you, last night as I laid in bed, I wondered if I'd ever have the desire to write again. I wondered if the events of the day would affect me to the point that even writing would bring no release, no satisfaction. Life changed yesterday at 537am, a time that will forever be stamped on my mind's eye. I can still see the red numbers on the DVR box as clearly as if I was looking at it now.
537am was the time I got the call. The call I had been dreading for weeks. The call that announced that gma had won her race.
The house phone (yes, we still have one of those because we live in the sticks) has spent its nights tucked away, between my pillow & Brian's for at least a week. With its early morning ring, I knew exactly what to expect on the other end. And yet oddly, the first thought that crossed my mind was, "No regrets. You've lived the past 13 weeks with no regrets." It was no doubt God's comforting voice speaking to me.
I answered. Momma was sobbing. I knew & simply relied, "I'm on my way." I slipped my worn out rubber boots on, reached for the first flashlight I could find, and walked out the back door. Poor Brian was still trying to get dressed as he chased me outside, "Hey, do you want me to come?" "Please."
We walked in silence through the field to gma's. I diligently placed one foot in front of the other as I made my way up the stairs & into the house. I could hear the hymns playing on the cd player, the same ones momma, Erin & I had sung to her the night before. I peeked around the bedroom doorframe, as I have many times over the past 13 weeks. My momma was there, crying. I heard my daddy sniffle, a sound I've heard very few times in my life. I took a step back to compose myself again.
Apparently they saw us. I was in no hurry. Momma needed her time alone. Daddy stepped out a few minutes later & said, "You can come in." Daddy pointed me to the chair beside momma and so I sat down. We listened as she heartbreakingly went through each time she had gotten up during the night. She had given gma medicine at this time & that, almost as if she felt the need to give me a nurse's report. I listened and nodded. She had read from Psalms at 1030 and 230 when gma was fretful. The overpowering authority in God's words had calmed gma during those moments.
I anxiously listened as momma drew closer to the current time. Had God answered my prayer that momma not be in the room at the time? Would she have to live with the memory of that last gasp of air for the rest of her life? Did she have to watch gma struggle to the finish line even more?
She had checked on gma at 510 and had gone to attempt to figure out the day. At 525 she returned to her vigilant post. In God's mercy & grace, he indeed spared my momma from those memories as Jesus had taken gma's hand, just as momma let go, and walked her home. I imagine it was a lot the same way he did Enoch. "You've come so far, let's go on to My house this time."
Honestly for me to tell you about the rest of the morning, it would require me writing a book. The graciousness of God in allowing Laura to literally guide the funeral home to the house, insuring she would get to see gma before she was gone. The graciousness of the funeral directors in not covering her face as she left that house one more time. She was my gma, not just a body they had come to retrieve. My daddy wrapping his arms around me as I tried to busy myself by washing the sheets and doing the dishes. I'm sure no one else knew what to do with me at that point. I just needed to do something. The alertness of my family when my brother got home from work so that I could run to meet my son who works the same shift.
Then there were my babies. I would have to tell them that life had changed. And so, I did. After some time, their response was, "Can we go over there?" With no one in the house, I knew this was the time we needed. We piled up in that creaky, striped down hospital bed and Brian thanked God for Gigi. He thanked God for her unconditional love for us. He thanked God that because of Gigi we know him more. That was what they needed.
I cried myself to sleep on that bed a few minutes later. That was what I needed. Then I waited for the furniture man to come gather the things. The sound of that unplugged oxygen machine was deafening. He was so gracious when he got there though. He could tell I was holding it together as best I could. Every question was answered with a gentle, "Yes ma'am." or "No ma'am. You're fine."
I intentionally fell asleep before dark as the dread of an evening without my routine drew near. I texted Aunt Birdie at 8 with a simple "I love you" which spurred a two hour conversation sitting on gma's front porch as both of us felt lost.
Today, I've managed to walk from my bed to the lazy boy and back countless times. Drifting listlessly. As the evening drew near, momma texted to ask what I was doing. She & daddy were out walking between the four houses. I again slipped my boots on & walked out the backdoor. Together we walked aimlessly around, talking & crying some more. When we were ready, we walked through the backdoor together. There were phone calls still to be made that only gma had numbers for. The front porch light had burned out during the night. There were a few things I needed to grab from the fridge. Then, we locked the doorknob and walked out. We had done it. We had made it back into the house & then back out before the darkness set in. That was also exactly what we needed.
Over the past 36 hours, I've come to hate how I can be perfectly ok one moment and sobbing the next. Strong, then oh so very weak. But this is the way that grieving works. It's not a bandaid we can put on to cover those sudden outbursts of emotions we feel. Nor is it something we can rip off quickly so that the sting is momentary.
Life has changed. I asked my friend today what a care giver is supposed to do when there is no care left to give. This is it. Grieve. Mourn. Sing. Be thankful. Cry. Sleep. The lostness I feel each evening will wain with time. Very slowly, bit by bit, we will do exactly what we feel we can for the day, no more, no less. We are just as dependent on God's faithfulness & strength as we were when we began this journey. He has given us exactly what we needed for each moment and will continue to do so. We will laugh together & tell stories of gma. We will cry together. We will read the online guest book together & marvel at the common thread of "Lived her life for Jesus" in every post. We will take each step in faith that the Love that has never failed us before will not fail us yet.
Know that we cherish each word taken before the throne on our behalf as we live out the groaning in Romans 8. Please don't feel the need to ask me if I'm ok though. The resounding answer in my soul is no and yes. I reminded my kids Sunday that the second gift God gave us was a family. And mine is pretty awesome. None of us are ok. And we won't be for a while. But at least we're not ok together.

We will carry you there

One of the things I've enjoyed doing for myself is running. I'm not setting out to win any marathons, it's only recreational. Honestly though, it's always been more than that. It's an escape. I don't have to think about what chore needs to be done next. There's no one asking me questions. My playlist is customized to whatever I need to hear that day.
But always when I run, I hit a proverbial wall little more than halfway through. I have two options at this point - push through or take it easy. If you know me, you know there's very little take it easy about me. So push is the only real option.
When I would reach that push point, my body would take over, even if it was just going through the motions. Shortly after that, there was a euphoria I felt as my body released the adrenaline & endorphins I needed to reach the end. And I would finish, victoriously.
Thirteen weeks ago our family set out on a new marathon. Caring for gma has been a race that none of us have thoroughly enjoyed to be quite honest. Watching her slowly slip away has caused a litany of emotions none of us had experienced to this degree for this amount of time. There have been plenty of times we needed a push from each other and the voices of those who have cheered us on from a distance. But this is not our race, it is gma's. We are her supporters.
Things took a definite turn last Thursday. Sitting here today, I can tell you I couldn't have imagined being in this place. Gma, the gma we know, is now gone to us. She is now blind. Her body remains, struggling for each breath she takes in, but for the most part it is simply the mechanics of life we are now watching. And for that, our hearts grieve.
But something amazing happened, at least for me, last night. We've attempted to keep as much routine as possible for her. Sunday morning when she was moaning, I asked her who she was talking to, she said, "Chrissy." I said, "Oh. Yes, Chrissy comes on Mondays to do bible study with you." She replied, "And Krista."
So last night, because she still hears us,  Chrissy and Krista opened their bibles & read to her. Mike had brought dinner & we were all there. Ever since gma moved 12yrs ago, my family has done every birthday, every family dinner with momma & daddy at gma's so she could be a part. Last night felt oddly "normal".
Then after everyone left, when it was just momma, daddy, Mike & I, momma & I set about getting her "ready for bed". We've ended every night with momma sitting on the left side of the bed, I on the right, holding her hands & saying our goodnights. (Sounds a little Walton-ish, doesn't it?) I was completely taken by surprise when momma began talking. She sounded so upbeat, so happy after such a emotionally draining day.
"Momma, it was such a beautiful day today. Everyone is doing so well..." I listened as my momma went through the entire list of family members & recounted the highlights of God's faithfulness. (which I can share with them independently) "....and Jeffrey starts work in the morning. Momma! God have him a job! So see momma? God's answered your prayers. It is ok. We're going to be ok. God is taking care of us. So you can go home & rest now. You can talk to Jesus face to face. You can tell daddy all about us and hold those babies you never got to hold. Momma, it's ok." Then without so much as a break in her voice, my momma said, "I love you momma." and gma smiled. Of course I was sobbing uncontrollably by this time. I took a very long deep breath and said, "I love you Mawmaw." She smiled again.
Then as if someone had opened a window, the fog was cleared. The heaviness was gone. There was a peace, the peace I've been so anxiously awaiting & anticipating.  Now it was the peace that was overwhelming me.
I've never felt anything like that before. Ever. No words I type would ever be able to express to you how very deeply and widely I felt it. None.
This morning I sat on her bed and took her hand once again, "Mawmaw, can you see it?" I asked with great anticipation. "I can see it. I can see the finish line! You're almost there. We're going to hold your hands and carry you right up to Jesus. Then when we let go, He's going to take your hands and carry you the rest of the way. We're right here with you." I know she heard me. She moaned again.
As I look at the familiar face in that bed, I see my gma, blind & confined to a bed. But when I close my eyes, I see her open her eyes again to the sight of the Savior she lived her life for. I see her dancing. I can see her singing.
It is with great honor I will carry her through until her race is done. I don't know why my momma & my aunts deemed me so worthy of this honor. I'll never be able to tell them thank you enough for all I've learned or the precious memories they've allowed me to have. So together, we will all carry her victoriously right up to the finish line where her Jesus is waiting.

A legacy of lasts and laughter

Last night was perhaps the hardest night so far in the journey God is guiding us through. By 2am I could still not find the sleep I so desperately needed. I'm not really sure how long I laid in bed waiting, just waiting. My mind wouldn't let me sleep because I knew the sooner I slept the sooner the possibility of that early morning phone call would come. The phone call I had been dreading so much. I woke several times & sat straight up in the bed, sure I had heard the creak of gma's bed. I know I heard her call my name once. But I didn't. How could I? I was in my bed and she was a football field away.
The morning finally came & Brian just held me tightly as I cried, still unsure of how the morning would unfold. My heart sank when my phone buzzed at me. I rolled over & read the words "She's still asleep" at 9am.
I've thought over the past few months how truly fragile life is. We treat it oh so flippantly. Each night our fear takes over as we each dread leaving, knowing that smile, that prayer whispered in our ear could be the last.
With babies we celebrate every first that they have. The first smile. The first roll. The first step. In my strange family, even the first poo-poo in the potty has been celebrated with a call to daddy & Mawmaw.
Yet even with my babies, there has been the sting of each last. The last time they need help bathing. The last time they sleep with their favorite night-night. The last time I heard my little boys voices as puberty hit.
It's been two weeks since gma had a shower. I rushed through my errands that morning & got back to her house at 945 but it was still too late. She & momma had already done it as the plans for the day had changed. Even that night momma said something to me about wondering if that would be the last and the hurt her heart felt at the realization. It was indeed the last.
But even as we find ourselves in a season of lasts, there is laughter. The snarky grey headed woman in that bed finds it funny when we jump at her every move. She lays there with her eyes closed most of the time now, with a smile on her face, repeating the words, "Thank you Jesus. Thank you Jesus." Then she says, "More ice..." and squishes her mouth at you so all you can do is laugh with tears streaming down your face.
Her thoughts get crossed between the time they leave her brain and reach her mouth but she ALWAYS goes back to her default - Thank you Jesus. Thank you Jesus. Thank you Jesus. Soon, there will be a last time I hear those sweet words with that voice. Soon her voice, to my ears, will be silent.
I would be lying if I told you there wasn't a sense of dread to that statement. As hard as it is to see her like this, to know we've each prayed for a relief to her suffering, it is equally hard to know that when the relief comes, she will be gone to us.
BUT that's not the only sense I have right now either. There is also a sense of anticipation of the complete peace & joy that will come. Maybe not immediately. Maybe not even for days or weeks to come. But it is coming & I know it. That is how God is sustaining me for now.
So as I take each long stride on the short walk from her house to mine, wondering if this time will be the last, I will remember her words to me last night, "I'm not done with the race yet. I will run and keep fighting." I will keep in mind that the last time my ears hear her say, "Thank you Jesus" will be immediately before He hears them in person for the first time and gives her her crown of glory to top that beautiful grey hair. And that is what we will celebrate. 
That is her legacy.

It's not going to be ok

Perhaps one of the greatest lessons I learned as an adult was as a young minister's wife. It was my first year to direct Vacation Bible School & the weekend before we were in full on decorating mode. I spent a lot of time that weekend with a dear woman who was about my momma's age & had just the summer before buried her only child. Being a natural listener, I spent most of that weekend silent, gleaning all the wisdom that I could.
She talked about her son & I eagerly listened. I too was the mother of an only son at the time. She talked about the happy times & plans that they had had for his future. She talked about the horrible bacteria that invaded his brain & body in such a short time. She talked about the whirlwind days that followed & the outpouring of love she & her husband experienced. And it was then that she cautioned me, "Never tell someone you understand what they're going through. Every circumstance is different & while you maybe able to identify with them to a degree, no loss is ever the same. I find myself wanting to tell people that share how much it hurt when they lost their mother, father, brother, that they have no idea what I'm going through. They just don't know."
I took her words to heart & to this day have never once uttered the words, "I understand." to anyone, in any circumstance. I've thought about all the platitudes we offer when perhaps it is just best to remain silent. "They're in a better place" and "You'll be together again one day" are things we say when we just don't know what to say. But my most hated platitude is "It will be ok".
"It will be ok" implies that you have some foreknowledge of what the future holds. It implies that the current suffering is supposed to be somewhat less because it will soon end. It implies that the loss that will be incurred won't forever leave a scar on the heart of the one standing before you in tears. It implies the current hurt has no eternal significance.
The truth is it will not be ok. Life here on Earth will never have the same richness that it does when you have to say goodbye to a loved one. I will not be merely ok.
So when you ask me how things are going & in one breath I answer you, "My brother lost his job & has been without work for 5 months. My 87yr old gma is struggling with the treatment for her pneumonia to the point that her eyesight & heart are being seriously affected. It's excruciating to watch my 92yr old gma fight to wake up in the morning & throughout the day with nausea & pain that bare her no relief. And my aunt, my second momma's, battle with terminal metastasized breast cancer has now reached the point that they're pulling in the big guns in hopes of stabilizing the ravenous toll the cancer is taking on her body." DO NOT TELL ME EVERYTHING IS GOING TO BE OK.
Please, just take me by the hand & tell me the truth, "It's not going to be ok. But it's going to be exactly what God has planned. I have no words to offer but instead my silent arms will be right here." Tell me stories of my gmas & my aunt. Tell me how much they mean to you. Let me know that you grieve too. When I need it, let me stand in the corner silently while you carry on conversations without me so that I'm not alone but don't have to engage either. And when I burst into tears of deep soul-felt sadness, gently wrap your arms around me & patiently wait until I can gather the strength to move on.
"For I know whom I have believed and am persuaded that He is able." Yes, ultimately, the truth is it will be far better than ok one sweet day but for now, it just hurts too much to hear you say it.