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Nights: Life With ALS

 

I’m here again tonight where I often find myself: sitting in the dark beside Steve’s bed, not ready to sleep but not willing to leave him. Nights are both hard and good.  They’re hard and then they’re good.

 

Around 10:30 every night, I give Steve his night meds – a pretty potent combination designed by hospice to help him sleep, keep him from choking and help with the pain he’s been experiencing in his shoulders. While they sink into his system, I refill the humidifier in his breathing machine, put his bed down, change the linens on his pillow and push the bed as far to the middle of the room as it will go. He rolls in thirty minutes later like clockwork and by this time, he can hardly keep his eyes from closing. I’m grateful for the meds that help him sleep more comfortably because sleep is his only escape.

 

I remove the neato cup holders from his wheelchair.  His caregiver, Crystal, devised this ingenious system for him to keep a spitting-cup always within reach.  He liked that so much that she added another one for the remote control. What man in this world wouldn’t want a carry-along caddy for his remote control?  Crystal and Steve are partners-in-crime, for sure. At night, I take the cup holders off so he can move his footrest in which makes for a much safer transfer from chair to bed.  How we discovered we needed a safer transfer system is a long, scary story that I’m not ready to retell just yet.  (If you’ve never worked with someone with ALS, the best way I can describe it is to say it’s like moving someone whose limbs are made of heavy jello.  It’s very awkward and I’ve yet to find a system that feels foolproof.)

 

With the footrest moved in, I take off  Steve’s neck brace and shirt and then we count down to three and I lift him out of the wheelchair, balancing him on shaking legs.  He can stand long enough to let me pivot him onto the bed. I breathe a silent sigh of relief every time he is safely on the bed.  He uses the suction machine and then I lift his head up from where it’s fallen against his chest and put the breathing mask over his face. Nearly every time I do it, I wonder how many times I’ve done it in the past few years. I wonder how many times he has dreaded another night with the mask and how much he longs for the days when he could sleep without so many constraints.

 

I turn on the breathing machine and it makes a soft, whirring noise that has become a comfort to me.  Steve lays down hard on the pillow – he has very little core control, so it’s always a pretty ugly drop from sitting to laying on his side, legs dangling lifeless over the side of the bed.  I lift his legs up and move his arms to an angle that is useful for him to gain some leverage. I place a hand warmer in his palm, put his hands together and then wrap them in a towel.  I cover him with several blankets and have learned to tuck them in well or he will wake me up soon, telling me he’s cold. Nights are cold without muscles. When he’s finally lying there, tucked in and masked-up, we wait.  I stand beside him while he decides what needs to happen with his head in order to be comfortable. He thinks about it for a bit (sometimes a pretty long bit, which is kind of annoying) and then tells me what to do.  “Lift my head up and pull the pillow toward you.”  Things like that.  He’s unable to shift his own head in any way, so he relies on others to do the adjusting for him. Sometimes  I get it right pretty quickly, sometimes we’ll go through seven or eight different positions before he feels ready to sleep.  Not gonna lie, this is one of my more frustrating responsibilities. When his head feels just right, he whispers, “Okay. I love you.”  Every night, that’s how it goes.  And the process used to be repeated several times a night, but now it only happens once or twice and, this week there were two nights when it didn’t happen at all.  He slept straight through from 11 to 9:00.  That hasn’t happened since…I can’t even remember when.  On the one hand, I’m glad he’s able to sleep.  On the other, I think it’s indicative of the progression of this disease and how exhausted he always is.

 

Once we’re in for the night, I pull the covers up over myself and my first thought is always, “We made it.”  We made it through another day. We earned a night of sleep. And we tried with all that remains to glorify God and to make His name famous. And maybe we failed a lot, but we  tried.

 

Sometimes I fall asleep before any other thoughts, and sometimes I lay awake for long hours, thinking of how life is now and how it will be. I wonder how much longer our nights will be like this.  If I’m honest, there’s not a single night when I don’t wonder if Steve will wake up in the morning.  The longer we go, the more I’m able to shelve the stuff I can’t solve, but sometimes it does race in all bossy-like, trying to steal my peace.

 

And nights like tonight, I write. I mostly write so that I’ll remember it down the road. I write to remember these dark, intimate moments when marriage looked so different than I ever dreamed. I write for a day when I’ll need to remember that I’m stronger than I think.  And I write so the rest of the world can understand the brutal realities of life with ALS.

 

That’s why I’m pushing publish on this post. Not so people will feel sorry for us, but so they will know the nature of the fight so many face, and that many of them face it alone or without the benefit of a caregiver who shows up in the morning.  I believe that every person with working arms and legs has something they could give to a person who has none. Every person could volunteer time to give a caregiver a break or give some money to help find a cure.  Maybe if enough of us tell our stories then we, the citizens of humanity, will be compelled to fight for change.

 

I believe.

 

With hope,

 

Bo

March 20, 2015 - 8:45 am

jacquelyn strayer - Thank you for publishing…

March 20, 2015 - 8:55 am

Angie White - Dearest Bo, I remember these kind of nights with Tim. I’ve been reading your book Beautiful Battlefields, and this is one of them. I was struck by one of the chapters when you wrote about how God prepared you for nights without Steve when he was out of town. I think the Lord did the same for me with Tim because he used to travel for work, and he loved to hunt.

In the nighttime battles with ALS, I used to get so frustrated at going through all of the long list of steps to try to get him comfortable and how long it took when I was so exhausted and all I really wanted was to drop down in a fetal position and cry, but we’d have to go through one more round to get him comfortable. Even when he had to give up sleeping in a bed and we’d go through all the steps of getting him comfortable in his chair, and doing that for him was all I could do, I know the only way we got through those nights was by God’s grace. And His mercies were new every morning. Great is His faithfulness, sweet sister in the struggle. Praying for you both.

March 20, 2015 - 11:39 am

Toni Harvey - My friend Suzanne (who you know from Bend) sent me your book after my brother was diagnosed in 2013. I put it down because it was too painful to read. We lost our brother last October, too quick and too young. At the ALS Remembrance service in San Francisco a few weeks ago I met Lucy Wedemeyer, a very sweet woman. While I wasn’t the caregiver for my brother I was thankful for his wife, a live in friend, and our mom, who did it all. It’s a horrible disease but as I mentioned during my sharing time at the service, since there is no cure at this time I’m glad he did not linger since his decline was so rapid.

I am truly grateful for the attention and funds that last summer’s ice bucket explosion brought. This isn’t a rare disease like everyone thinks, it’s just that the stricken are taken so quickly. I’m praying for a cure!

March 20, 2015 - 3:04 pm

Jane Lellman - I remember the late evening routine. Not knowing if our struggle would result in 10 minutes, 1 hour, or 3 hours of rest. Not knowing if he would wake in a panic unable to breath, or if I would wake in a panic listening for his next breath. May God continue to be a living presence in your lives as you walk this difficult path.

March 20, 2015 - 4:26 pm

Laurie - thank you for writing Bo in the midst of this hard place. It gives me strength to hear from your heart. I am experiencing all of this with my sweet mom. It’s a tough character building journey. It’s made me appreciate the small things like being able to blow my own nose or rolling over in bed and so much more.

Love and prayers to you both

March 20, 2015 - 5:21 pm

Heidi - Thank you for your vulnerability and willingness to share the reality of your nightly routine. It has given me so much perspective, so much to be thankful for. You are absolutely right that those of us with properly functioning limbs can give of ourselves to relieve a caretaker or offer someone else a hand. Thank you for challenging me today with your honesty and openness about the struggles Steve’s facing right now.

March 21, 2015 - 4:22 am

Adriel Booker - And this is exactly what love looks like.

Thank you for sharing, Bo. You both are teaching me so much. x

March 21, 2015 - 7:16 am

Linda David - Dear Bo,

I have had you and Steve on my heart and in my mind for the last 10 days so very strong. We walked this journey when our daughter-in-law had brain surgery and awakened as a paraplegic. It has been a five year journey but she now walks with a walker.
So, I appreciate the appeal for people with arms and legs to help those who do not. I know this is not the path you would have chosen but there are many of us out here who are lifting you up on a daily basis. You are loved!

March 21, 2015 - 4:59 pm

Jody Collins - I can’t lie, Bo, every time I read your posts, I wonder at the start, “Will this be the one? The one where she tells us Steve is gone?”
You were right to hit ‘publish’ because of these words,
“I believe that every person with working arms and legs has something they could give to a person who has none.”

We cared for my mother in law for four years and her most difficult days were in the last 6 weeks. That ended in January, and we are still transitioning.

There is so much we can give. And it is worth it.
Praying for you.

March 21, 2015 - 8:32 pm

Mom - Thanks, Bo, for your blog. I will read it again and agin,knowing it is from your heart,and being willing to share it with others. God has been, and is doing something very special in yours and Steve’s life. Tim alone will tell all that has been accomplished, and how you have been a glory to God. Love you both so very much, and pray for you, that you will endure to the end in triumph. Mom

March 22, 2015 - 12:28 am

Jess Lederman - I only wish I had your book when I was carrying for my wife during her battle with ALS! Beautiful Battlefields is a powerful work; the Holy Spirit is with you indeed. My thoughts are with you and Steve.

March 22, 2015 - 1:32 pm

Heather Sutter - Thank you for sharing, Bo. You both are in my prayers multiple times throught the day. May God’s strength continue to be your strength every moment.

March 23, 2015 - 5:37 am

Trudi - Sweet Bo-

When I read this post, my heart broke into a million pieces for you….not from pity, but from relating to every.word.you.typed.

I have walked your walk a thousand times….my mother was older (77) when she was diagnosed with ALS. Why she chose me, the youngest of her children as her primary care taker, I will never understand. But she did. And that is okay. I would do it again, ten thousand times ten thousand.

I had those same thoughts, fears, dreads, each night as I put my precious mother in bed. Would it be her last? Would she finally garner the sleep she needed? Would I get the sleep I needed before rising at 4:30 to begin my day getting ready for work? Oh LORD, why must we go through this?

Every time I touched her precious body, it brought pain to her and tears to my eyes….how much longer could she, could I go on? His strength is perfect….He knew.

She slipped away, while I was singing….peacefully, no more pain. But where do I go from here? How do I go on from here?

Mama has been living gloriously in her new body for three years now….no more pain, no more feeding tube, happily running the streets of gold waiting for me!

Beauty from ashes and hope from despair. I know better things are coming….prayers for strength and comfort dear one!

March 23, 2015 - 3:17 pm

Laura - I hang onto every entry. Your experience will be mine in the coming days. You are such an incredible woman. I pray for you daily. I pray that God will provide everything that your family needs to get through this time. Thank you for sharing. Thank you for being real!!! Thank you for getting me ready to face the nights to come.

Laura

March 24, 2015 - 8:13 am

Bob - Bo & Steve,
The courage and compassion you share with each other is compelling and an awesome example for all of us. We can’t begin to comprehend the daily, hourly and I am sure minute-by-minute challenges you face very day, and as you so deftly describe – every night.
There’s not a day that goes by that I don’t pray for you, the kids, your extended family and your friends that are geographically close to you and assisting you in whatever way they can.
I share your story with everyone that is dear to me, and to those that I barely know. Many of those have become “followers” and have thanked me for shedding light on your story.
I deserve no gratitude, I feel led to share your testimony of courage, strength, vulnerability and most importantly – FAITH.
Please give each other a HUG from me, and to the kids.
Love you guys!

March 29, 2015 - 11:37 pm

Pat Sullivan Whitson - Hi, Bo. I’m one of Jane Williams’ San Diego sisters…
She told me about you and Steve years ago when I shared that a friend of ours might eventually be diagnosed with ALS… He was this past February.

You and Steve are in my heart and prayers, as now are my friends, Donna and her ALS stricken hubby, Ed. They, too, are believers. They’re in their 50’s, their two teen girls in high school–one graduating this year, one a couple of years behind her. The girls will soon be told what “Daddy’s undiagnosed ‘nerve problem’ that has him limping and loosing ability to button his own shirts” is now diagnosed to be…. Sigh.

I’ve passed your books onto them. They’ve been both hard AND inspirational for them. They’re believers, as are the girls.

Thank you for your courage, humility, and generous hearts to share with us all so we can be praying for you and others who obediently surrender your moment by moment suffering for God’s glory… I am encouraged by your holiness.

Thank you for letting us prayerfully support you and witness your bravery in the midst of your battles…

Pat

March 30, 2015 - 8:20 pm

Rachel Hallett - I so appreciate your complete honesty. As a caregiver, it is easy to keep all of our annoyances and frustrations to ourselves, because we don’t want people to think we don’t love and care about our significant other. It’s healthy to be real, and unashamed. Stay strong! Prayers always.

April 3, 2015 - 1:34 pm

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