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When the Caregiver Breaks

 

Somewhere in the hazy fog of the past crazy week, I came to a realization and it is this:  I have become exactly what I planned never to become.  Well, let me rephrase that:  I have become what I hoped I would never become.  Had I actually created a plan to not become it, I would not be in this pickle now (wherein pickle is defined as: teetering on the ragged edge of burnout and meltdown.)

 

In the beginning of this ALS battle, countless people warned me:  you have to take care of yourself, too.  And I nodded in agreement – and I mean real agreement, not that condescending, falsely humble, “Sure, friend, thanks for sharing that piece of advice that I will never actually use,” agreement.  Not, “Yeah, I already know this stuff and have it dialed,” agreement.  I knew going in how important self care would be.  And the thing is: I do actually like myself.  I’m neither martyr nor masochist.  I do have some INTJ-related workaholic tendencies, but I can down-time like a champ when I know I need to.

 

So this is the week I’ve been forced to ask the question:  how did I get here?  How did I end up in this ditch of discouragement and numbness and frustration?  The answer is clear and you’ve probably already guessed it, but the reason behind it is sort of funky.  I am in this emptied-out place because I have not asked for enough help.  Bottom line, Steve’s care has grown beyond my ability to handle by myself.  I have been away from him six nights in 2014  – all for ministry trips – and in the course of those six days away from home, I have spoken twelve times.  The trips have been excellent, but they haven’t been relaxing.  In July, our lives changed dramatically as ALS took center stage and began to eat away at our nights, stealing the precious, replenishing resource: sleep.  (Seriously, if you have access to endless nights of uninterrupted sleep, take a minute and thank the Lord for this great gift.  We take it for granted so much, but it is an essential foundation piece for every other thing.)  (Did I sound like your mom just then?  Sorry.)

 

As the opportunity for sound sleep ebbed away, so did my ability to think clearly, process cohesively and maintain even trace amounts of the me I used to be.  Not that the me I used to be is so special, but there is something about pre-ALS Bo that I miss and longed to reconnect with.  The other thing that crept in not-so-subtly was a reluctant resentment toward these responsibilities and ALS and life in general.  I’m not proud of this, but it is what it is.  Instead of examining the resentment and dealing with it, I would just beat on it with the Guilt stick.  I addressed my need for a break to breathe by reminding myself (see mom voice above), “STEVE doesn’t get a break from ALS.  You’re fine.  You’ll be fine.  You’re not losing your mind.”  Except I sort of was.

 

The main reason caregivers burn out is a reluctance or inability to get the help they need.  The reasons for that reason vary wildly.  Some cannot trust others with their loved one’s care.  Some feel guilty, like they’re handing off their problems to other people.  Some don’t think their spouse would be open to anyone else caring for them. And some, quite simply, don’t know who they could ask.  While these are all at play in my situation, they are not my primary issues.  My issue is this:  I am lazy with myself.  And I have reached levels of exhaustion where the idea of making another phone call or teaching someone how to take care of Steve feels like way more work than just doing it myself.  I have made some half-hearted attempts to find help at night, but as soon as it doesn’t work out I give up and crawl back into my hole of despair.  And honestly, I think this is the issue for many ALS spouses (and all others who care for the terminally or chronically ill):  they don’t want to go it alone, but they are too deep in to be able to work their way out.  Their community of friends and family watch helplessly, not knowing how to intervene while the caregiver insists she’s got it covered. She doesn’t.  She just doesn’t have the first idea about how to plug people into the holes that she has been filling for so long.

 

So, back to my story: Long night after long night culminated in a meltdown at the breakfast table one morning with my daughter, Tori.  I have been reluctant to share how I’m doing with my kids for fear they would be overwhelmed by it and feel like they have no fully functioning parent in their lives.   On the contrary, that beautiful girl spoke strength and wisdom into my heart like none other.  She preached at me.  She comforted me.  And after that, Whit called me to let me know that my sisters and brothers-in-law were coming for the weekend so I could get some sleep and do something fun like…leave the house.

 

I’m not ashamed to say: I cried like a silly when I got that news. And that’s when I made a crazy decision and sent Whit a text:  “Would it be bad if I went away?  Like away away?”  I knew it would be tough to step back and let this (very capable) crew step in if I was on the premises.  I knew I would not be able to show someone else how to empty the suction machine if I was there and could just do it real quick. I also knew that if my sisters (who are my very dearest friends) were in my house, I would spend all my time talking to them and zero time on the processing I knew I really needed.  For several weeks my dearest dream had been to get a hotel room and sleep and think and cry and be.  But I was worried.  I worried about how Steve would feel when I told him I was leaving just to leave.  I worried it would look like I was running and, candidly, I care more about what the watching world thinks than I should.  I’d love you to think I’m awesome and strong and I would have kept this whole little thing a secret, except for one thing:  the other caregiving spouses out there who are breaking beneath the weight of their load.  Many of them read this blog and I cannot afford to show them a painted-on, propped-up version of myself.  If I pretend that I don’t need help, they will feel guilty and weak when they do.  And they do.  We all do.

 

So, that’s the backdrop for what would become one of the most wonderful 18 hours ever.  Since I’m already over 1,000 words, I’ll save the trip recap for tomorrow, but check back in because it’s very cool. And also?  I’m writing this post at the breakfast table from my favorite lodge in this whole world and I just wanted to flaunt that information for a second.  In two minutes, I will pay my bill, get in my car and drive back to my life and the man I love more than any human on this planet.  And I cannot wait to see that wonderful guy.

 

With hope,

 

Bo

 

 

Dear readers – this post was hard to write and hard to publish. I’m trusting you with the depths of my heart here.  Often when I post things like this, I hear from people who cared for their spouses brilliantly until they placed them in the arms of God.  Sometimes the emails are a bit corrective to the tune of “I loved caring for my husband and I wish you could find it in your heart to love it too.”   Please know how deeply I love Steve Stern and how committed I am to walking this road with him.  This is unchanging.  But the level of caregiving required is overwhelming sometimes and I feel quite hopelessly unqualified. I have heard from countless caregivers who feel the same way, but are reluctant to say it in public for fear people will label them harshly. I am only opening up this tender terrain so those who care for the caregivers can understand some of the things that go on in our complicated lives and so the caregivers who are feeling desperate will know they’re not alone. While I’m open to feedback, I would respectfully submit that we all process a battle of this magnitude in different ways and there’s no one way that works for everyone. So I guess I meant to say:  I’m open to feedback-fueled by grace.  Thank you.  I love you.  

 

 

 

October 27, 2014 - 9:07 am

Rene - Ah, Bo. What selfless love you have shown again with this post. Maybe inadvertently. To show your struggles to the world helps not only the ALS community, but the human community. Bo darlin, what a gift of love it is to all of us – to know we are not alone. To know that if one of our heroes in the faith (don’t cringe – hear me out) can weep and need rest and help like the rest of us mortals, and still love and serve both God and man… To tell us this, to put it out here for all to see and gain strength from, that is a gift of selfless love.
Thank you for this.
Prayers and love.

October 27, 2014 - 9:15 am

Rob Bagley - Love your heart, Bo. Thanks for being real.

Rob

October 27, 2014 - 9:16 am

Jalet - It is in the depth of our transparency we allow God to be the biggest, the Spirit to use us and others to find hope. Not only is your translucency an indication of your energy and abilities, it is the hidden treasure of both your strength, and His abiding love. I am proud of you Bo Stern. Not for doing for the ‘unbeautiful’ mess of ALS perfectly, but for finding perfect honesty in the shortcomings of the unexpected journey. I respect the honesty of body, mind and exhausted spirit in the trenches, more than I could ever find connection from a frail, false pedestal.
My prayers for grace in the battle and sleep in stolen moments continues for you.
I love you…and yours.
jalet

October 27, 2014 - 9:23 am

Sharon Molin - Dear Bo, you don’t know me, but I am a friend of your mom’s and I feel close to you because of her.

Thank you for being so honest about the trial you are going through. I pray no one… ever… criticizes you for your honesty. You are doing marvelously considering the hugeness of the trial you bear. The thought of watching a loved one die by inches is excruciating and no one has the right to say negative things (although I know they do). Lord, please protect Bo and her family from these harsh, unloving words.)

My grandson (32) and his fiance (33) are going through a terrible trial, too, at the moment. They have plans to be married in the spring and two weeks ago Victoria had a stroke and is not responding well to treatment. Joshua has MS and the stress is causing him to have flare ups with that. He has to work to pay the bills of two households plus all the medical bills hanging over their head… but he is so exhausted from the MS, the stress, etc. he can hardly function. So I am going to send this blog on to him just so he can see that he is not alone. No, it is not ALS, but it is a huge trial for them and it is so hard to be able to stand tall in the midst of all the stress and exhaustion.

This is just to say I pray for you and Steve and your whole family. I thank you for being so open and sharing your heart. It does help and it does ease the pain somewhat for those going through any kind of a trial. I pray blessings on you. I care what happens to all of you.

October 27, 2014 - 9:28 am

Amy - Dear Bo,
Thank you for sharing where you really are. I appreciate it because I believe I’m in that role of caregiver without being given that title by anyone. I’ve been married 21 years and have 4 kids, two of which have had some special needs of sorts. My husband joined the military late in life and was deployed to Iraq in 2009-2010 and came home with 3 “mild” injuries and PTSD. His Psych at the VA said, “just drive in Portland traffic as often as possible to desensitize yourself. You’ll be fine.” Worst advice ever. Since returning home, he doesn’t sleep well so I haven’t either in those 4 years. This year I have had a breakdown twice and teetered close to losing my mind so many times due to the stress of trying to manage our home on terrible sleep. Our oldest daughter is moved out to college now, so last week a friend came over and helped me move into my daughter’s empty room. My husband graciously agreed to try it, and after just a few good night’s sleep I am feeling better than in a long time. It is hard enough to ask for help, and worse when those closest to you think that because people look “fine” on the outside that you must be crazy or weak or just dramatic. It may seem like sleep isn’t that big a deal, but it most certainly is and I’m glad that you took some time for yourself. I will be praying that God will send the right answers for you and Steve to both rest well. Thank you for sharing!!

October 27, 2014 - 9:36 am

Holly - beautiful words!! I cared for my mother in law in our home until she died. And I had lots of help. It was a wonderful and difficult and rich experience BECAUSE I had lots of help. I would do it again with lots of help. Our generation will likely be caring for our aging and dying parents in our homes because the state of elder care in our country has not kept pace with the quality of life our parents are used to and deserve. We will need to become a people who can ask for help if we want to honor our families! Thank you for sharing your journey. It will be a cherished instruction manual for many who will walk your same path in one form or another someday.

October 27, 2014 - 9:42 am

John Laughery - I listened to this from Brennan Manning not too long ago when I was feeling weary and broken from some of life’s trials (trials I am continuing to walk through) and it was very encouraging. My wife and I will be praying for deep rest in Jesus, peace in the midst of your battle, and hope renewed each day!

https://www.youtube.com/watch?v=EK4hNCxutkg

October 27, 2014 - 9:45 am

Dee Zinn - Feeling blessed by the openness of your blog. So very proud of you for taking time to reflect and refule. Praying that you know and feel all the love from your supporters. I will continue to pray for you and your family.

October 27, 2014 - 9:50 am

Julie Creek - Been There Bo. Have lots of words, and thoughts. I will boil it down to this: Praying for God’s Grace for your family on every front.
Julie Creek

October 27, 2014 - 10:27 am

Becky Jo - Dear Bo, How bittersweet your circumstances are. Anyone (I think) can post and boast about their amazing resilience in caring for loved ones. That’s OK of course. It takes someone real to tell the truth of the heartbreaking struggle, grief, exhaustion, attempt to keep life as “normal” as possible for our loved one, children, family, friends, those we minister to, etc.

I was with a dear friend of mine a week ago Sunday when she said her “see ya later” to her mom who she had cared for on/off for 30 years. Her mom had MS and metastatic lung cancer. It was an incredibly difficult and beautiful time to share.The bond and spiritual connection they have did not come without much suffering. As you know, suffering to the core of your self is reserved for those Jesus can trust with it. It doesn’t make you immune to the pain and heartache or prevent you from needing others to help you get through it. It does bring you an amazing source of comfort, peace, and even beautiful memories of the privilege of caring so deeply, loving so purely and releasing so graciously.

If this sounds “preachy” at all, that is not my intention. I admire your courage to post this and to be working through the plethora of thoughts, feelings, decisions and sustaining as much normalcy as you can with your family. Continue to take good self care & process as you go. -Becky Jo
————————————————————-
For those who can, please reach out to this family. You may not know what to do, but just text or email Bo and let her know when you can be there. Don’t push too hard, but don’t accept her resistance at the first offer. Do laundry, mow the lawn, bring a meal, take her to brunch, grocery shop, bring her beautiful flowers, take her daughter to a movie or bowling, hang out with her and observe what it takes to keep up with the needs of Steve, learn the basics so you can care for him while she sleeps or runs errands or goes to the doctor/dentist, send her a snail mail card/letter, cry with her, laugh with her and let her know its OK to laugh (no guilt), look at photos of happier times, let her talk about her deepest longings and fears and the future, etc.

October 27, 2014 - 10:52 am

Terri Richmond - Bo, thank-you for being so gut honest! I am teary eyed as I just read your post. You are an amazing woman! Your posts touch my heart in the deepest place! Some day possibly you’ll write a book! You r an anointed writer and it is beautiful how you have allowed God to speak to you and teach you through the most difficult time in your life. Your doing a Great job Bo Stern!

October 27, 2014 - 11:16 am

Trudi Burner - Oh, sweet Bo! Been there done that. Cared for my mother for six months after she was diagnosed with ALS. I have two older siblings, but mama decided I was the chosen one for caring for her during this last stage of her life.

Feeling weak upon weak so many days….I understand the no sleep, no frills….Many nights when we would go to bed, mama begged me to stay up so I could keep her awake until it was a later hour to sleep…hoping and praying she would be able to sleep soundly through the night and not have me get up 458672093 times during the night.

But it was during the night, that God comforted, cheered and rested me through how many ever hours I got…whether two or three….and I was able to rise, at 4:30 a.m., shower and get ready for work and for the daily sitter to come and be with mama while I worked my job in the legal industry. He always woke me refreshed and ready to face the day, even though my old body was going “NO!!” in loud protest!

But getting up with mama each night was precious, special, full of laughter sometimes and always ended with a kiss on my “mamacita’s” little sweet head before laying back down until she needed to be “adjusted” again or helped up on the potty chair.

My prayer is that you find refreshment in the little things, strength for the hard things and rest during the quiet times and the loud times….He is there and the calm whisper of His name brings a calmness that only He can provide…..God Bless you as you care and love for your sweet Steve….

October 27, 2014 - 11:46 am

Terry - Bo- Thank you for your openness and honesty. I am so glad you have had a chance to recharge. I hope it’s not your last. My brother recently passed from ALS. I was so relieved for those times I could catch my breath. Sleep changes perspective :). I also found the ALSA support group to be a big benefit. We are all in this together. God Bless you guys.

October 27, 2014 - 12:11 pm

marsha Briggs - Bo Thanks to YOU for caring enough to always give… Your very best. Pour out His Love, till empty is the only gage exposed n then recieve from a a well that never runs dry, enough to share from this dry ground place, hope that endures.

October 27, 2014 - 12:26 pm

Teresa B. - Dear Bo, your friends will never EVER think that you don’t love caring for Steve because you take a break. I think to Tony’s Grandmother who needs LOTS of care in her nursing home. There is not one person to take care of her, not even two. But DOZENS who don’t work 7 days a week. You are only one person and can only do so much! I’m glad you took even a few hours for yourself to just be. And I’m sure your wonderful hubby was urging you to do the same. 🙂 We love you.

Teresa Brown

October 27, 2014 - 1:18 pm

Pete Quortrup - Dear Bo, I love your blog. I have bought Beautiful Battlefields and Ruthless and have not yet read them beyond the first few pages of each because I too care for my spouse who has ALS. I haven’t read beyond the first few pages of ANY book for a while now. I just don’t have the time. I believe you that this was a difficult story for you to post but what makes it difficult for you to share is what moved me to reply. It is the hard truth. Caring for an ALS patient is hard and it WILL overwhelm you. Thank you for sharing it. I hope you can find more competent, caring hands to help you carry your burden. It helps. And I hope you can find regular time away from the house like you just did. It really helps, as I’m sure you know. Thank you – Pete Quortrup

October 27, 2014 - 1:43 pm

Jo - Bo, Giving thanks for you and your honesty! You, Steve and your family are always in my prayers. I recently discovered your blog. I have been on the front lines with ALS as well- my precious Daddy. Your posts are a blessing!

October 27, 2014 - 1:44 pm

Bob B - Bo,
So very few of us can even imagine what it is like for you, Steve and the rest of the family. I read your post and could, in detail, “see” you at the table writing this post.
I could “feel” the quiet desperation you must have felt as you wrestled with you own needs and those of Steve and your family.
I am confident that those that read the post could “hear” how you are feeling, how challenging things must be, and how much you love Steve and want to be strong for him, physically, emotionally and spiritually. In order to do so, you have to “sharpen your saw”, and I am glad you did.
When you need another break, please let me know and I will be happy to fly out and take care of Steve…for you, for him and for me.
I can’t think of a better way for me to “Thank You” and Steve for your friendship, the example you set everyday of what it is to be intimate partners in life together, and the anointed example GOD has made of you both. In the lives you lead together, as individuals-husband & wife-parents-grandparents, and as friends to the hundreds, perhaps thousands, you have touched with your lives.
Stay strong Mrs. Stern and give your husband a hug for me.
Love you guys,
Bob

October 27, 2014 - 2:28 pm

Kathryn V. - Jeepers Bo, all I can say is hugs and prayers and more of both coming your way. I am so sorry that you have to go through ANY of this, and heck yeah, breakdowns are NOT a sign of weakness. Please don’t beat up on yourself.

October 27, 2014 - 2:46 pm

Phil Camden - Thanks Bo. I needed to hear this because one day my wife will need help and a break. That won’t mean she doesn’t love me, as it doesn’t mean you don’t love Steve.

October 27, 2014 - 3:10 pm

Lisa Ham - Bo, thank you for an eloquent and honest post. I lived with my grandmother during the early stages of her dementia. Caregiving can be so overwhelming. I’m glad you were able to get some trustworthy help. I’m glad you had the insight to see that you needed to get away. Thank you for writing to encourage all the other caregivers out there. You are lovely! We’re praying for you and Steve.

October 27, 2014 - 3:11 pm

JoanHKnateder - Thank you so much for sharing those feelings of burnout with me.
My husband got his diagnosis in April of 2014. Things are moving
faster downhill than I would have believed. Our feelings run the whole range of human emotions. We are all only doing our best.
And yes, we need a break now and then for balance. And we definitely need sleep. We are not at the stage your husband is at yet. But, I can see it coming. My heart goes out to you. You must
take care of yourself so you can be there for yourself and your girls. God keep you in his love. Joni

October 27, 2014 - 3:53 pm

yvonne clanton - We have 3 special needs children, one who is VERY SN, trach and gtube. This past month my husband & I went off once for our 25th anniversary for the night and then for a conference for 3 days! It was the first time I’ve been away with kids for over 16 years. It was overwhelming wonderful. I really did not want to leave the conference (my husband’s conference- I was not involved) I totally understand!

BTW, could you get nursing? My daughter has 24/7 nursing and one of her nurses used to work for a man with ALS. He had a trach and yet could speak and taught college classes. She worked for him for 10 years and enjoyed it. Maybe if he had a nurse to take care of his daily needs, it would make him more independent of you? I could not function without a nurse. But even with them, i have two other SN children. Best of luck to you

October 27, 2014 - 5:15 pm

Rachael Juarez - Bo, I don’t know you, but the spirit within me sure loves you! My heart weeps with your circumstances, Steve’s and your children’s. I know Steve as my husband, Matt Juarez, worked with him at Navis. I am so glad Sherry Neimeyer shared your page on FB. You and your family will be in my prayers more often!

October 27, 2014 - 6:00 pm

bo - Rachael – Steve loves Matt Juarez – talked about him often! Thank you for your prayers…they are sustaining us.

October 27, 2014 - 6:58 pm

Janice Smith - Dear Bo,
So very well said and nakedly true. I have walked through that valley where I didn’t know where my next ounce of strength would come from. To this day I am still very grateful for the angels that came and spent night after night with our son, and the friend who would come and sit so we could go to church. I will never forget the kindness and how it strengthened us to continue in our battle. We are not expected to be super human and yet we try to portray that to everyone around us for fear of letting our loved one down and those watching our battle down as well. Thank you for releasing every person reading this blog to understand that together we can make it and standing alone will do no one any good in the end. I pray for God’s richest blessings to be over you and your precious family.

October 27, 2014 - 7:51 pm

Pamela - Thank you for your honesty. Even Jesus and His disciples needed time to rest by themselves and regroup.

Mark 6:30-31 “Then the apostles gathered to Jesus and told Him all things, both what they had done and what they had taught. And He said to them, ‘Come aside BY YOURSELVES to a deserted place AND REST a while.'”

May He bless your time BY YOURSELF and give you REST. <3

October 27, 2014 - 9:52 pm

jacquelyn strayer - Bo, I am on page 40 of your newest book… I don’t want to tell you that you are amazing and such a great gift to others…because that’s not what you need to know. In 40 pages I was in tears…deep cleansing tears of joy. I knew that my pain was important to God. I matter to Him. My pain matters.
“He is a man of sorrows and acquainted with grief”.
You know. I had forgotten though,and you reminded me.
I won’t tell you that you are a gift, because you will find it difficult to believe. I ache deeply for you, and for what you are living right now. I am so happy that you have a perceptive compassionate family, and that you were able to get away to take a breath. There is no need for apology or even admission of weakness. There is no one who would not be in need of rest after so many sleepless nights. I am glad to see that God made a way for you to sleep …and think…and regroup. Thank you for sharing. I am so thankful to have met both you and Steve and have been able to read your books while actually knowing you and seeing you on the butte…at Safeway…Trader Joe’s,… Macy’s. You are a human, who lives in my town. You write books and speak sermons of unmeasurable inspiration. I am humbled to be living in Bend along with you and your family and our church. Tonight, I read your blog, …and your book to page 40… and Praised God for you. I pray for strength for you and your entire family. God be with you Bo. I am a believer in your God.

October 28, 2014 - 5:10 am

Dawn Pieper - Beautiful! A heart full of truth. I will be keeping this very special blog for all the mommy’s and daddy’s that take care of children with disabilities. As a Pediatric Occupational Therapist, I watch helplessly as parents sometimes crumble under the weight of care-giving. Your raw and beautiful words will surely bring comfort and hope. Your words bring comfort and give them permission to take care of themselves.

Bo Stern, You are a gift! Thank you for taking time to renew. I praise God for you and remember you in my prayers.

October 28, 2014 - 7:00 am

Jeanne Esmann - Thank you Bo for being so real, and courageous for sharing your true, honest heart. I am so happy you found time to be by yourself. I know you love your husband, but reality is reality!

October 28, 2014 - 7:53 am

Janell - Hi Bo – I am not someone you know and I had no idea about you or your husband – I just happened upon your blog, saw the title and felt compelled to read it. You are brave in sharing your vulnerability and your journey. I lost an uncle and a cousin to ALS but only really knew a glimpse of the world you describe. My guess is your life is a mirror to my aunt’s and my cousin’s wife’s while they were caring for their spouses. I’m currently dealing with aging parents and a mom who has chronic “something” all the time. I do not live with them but I am the only daughter and often the caregiving role is mine. My role doesn’t come within a hundred miles of what you are going through, but I can see bits and pieces that I can relate to and I am grateful that you are willing to be so open and transparent. This age of social media and sharing provides such a wonderful resource for support – but, unfortunately, it also opens up the opportunity for judgment. I suppose this will happen whenever someone lays their heart and soul on the line but I think that you are certainly a light that needs to shine and those who try to douse it, will only serve themselves and their flames will quickly blow out. Carry on – the world needs you.

October 28, 2014 - 7:56 am

kathy Gilbert - Thank you…Bo! thank you for your honesty so rich to help us all. Thank you for saying what some of us can’t find the words for. You are good. I send you my love! <3

October 28, 2014 - 8:04 am

Valerie Carleton - Dear Bo,
I so appreciated your post. Many years ago my dad was struck with ALS, a fast version, and my mom was his care giver. I was in high school and was as much as possible a support to my mom.
Today I am my mom’s care giver, with some family and professional help. I am also in treatment for some effects of disease myself.
Your sweet transparency is a blessing and encouragement. You and your family are in my prayers for all of the Lords richest blessings in these days.
To everything there is a season and a purpose under heaven
Valerie

October 28, 2014 - 12:06 pm

John Gregoire - Another beautifully written piece as we close out Caregivers Month, Bo. I love how you are fearlessly “real” with your readers. I wrote this blog post earlier This month. I’ve been trying to get Linda to take an overnight for months but she won’t do it until someone stands up and says “Just go.”, as you experienced. Caregivers àre special people cast in unimanagably difficult roles. Thanks for writing this. No one knows until someone speaks up.

http://hope-JG.blogspot.com/2014/10/caregivers-month-affirmation-and-reality.html

October 28, 2014 - 8:13 pm

Meg - Thank you. I have been caregiver for my teen daughter who has Trigeminal Neuralgia, and this… Thank you.

October 30, 2014 - 7:22 am

Sarah - Bo, so many times your blog has taken me back to the days of my sister’s battle with ALS with the simple mention of something like cough assist, but this may be the easiest to relate to yet. I am so glad you allowed yourself to open up and admit these true struggles for the benefit of others. I hope you also allow others to continue to join forces with you. It is a rough road, as you know, and I am reminded of days sleeping by my sister’s side or watching her husband bear so much of the responsibilities. The burden is not the person but the disease. You are doing a great job remembering that. Will keep praying for your family.

October 30, 2014 - 10:30 pm

Traci Wright - Thanks for the privilege to be one of your readers. Saw you and Steve in Oregon pastors conference. Hope to get to really meet you some day cause you’re funny and real… and we both are 40 something pastors wives (with daughters named Whitney). But I am encouraged by the pieces of your story you share and pray for your family when I read them. Love hearing that you took time for yourself to refresh. Healthy!