Oh dear, I just read my own headline and thought about how I would have responded to it two years ago, before I was the only healthy spouse in the house. “Whiner!” I would have thought, and perhaps would have added something along the lines of, “that woman needs to get hit with the get-over-herself stick.”
So, that’s out of the way. I know it sounds every flavor of selfish and crybaby and I’m not expecting sympathy. But I do want to say: sometimes it really is hard. Of all the emotions I expected to feel when Steve was diagnosed, I did not expect guilt. I think guilt is one of the most counterproductive and costly emotions out there. I hate it. And yet, I feel it nearly every day, when…
- I race out the door to work and I know how much Steve misses his job and how difficult it can be for him to find things to do during the day.
- The waiter at a restaurant has trouble understanding Steve (restaurants are noisy and Steve’s voice is much softer than it used to be) and so I jump in to explain and from that moment on, he directs every question and comment to me and then brings me the bill when the meal is done.
- I complain about being busy when I know how much Steve would love to be busy.
- I leave to work out or walk the River Trail.
- I ask him to pick up milk at the store before remembering that he wouldn’t be able to lift it up to the counter.
- I forget that I’m in charge of his laundry now. He’s always done his own laundry happily and he hates to ask me to do it, so sometimes it has totally piled up in his closet before I remember that…hey, that’s your job, sister! I absolutely don’t mind doing that job – or anything that he needs – but I just sometimes (often) forget that this is how we roll now.
And sometimes, it isn’t guilt that I feel. It’s weariness or sadness or even frustration that life can’t be what it used to be. Sometimes, because it’s hard for Steve to ask for help, I fear that it’s because he doesn’t think I can do it well enough. Honestly, there’s a veritable boatload of different scenarios that create a myriad of weird actions and reactions that are…hard. Not bad, really. Just hard. But I know that we can grow from hard in ways we can’t grow from easy. And In talking with a growing group of wives who are supporting their husbands through chronic illness, I’m discovering that just about 100% of them deal with the very same sorts of hard.
So, yes, I am incredibly, amazingly, outrageously thankful for my health. I have a front row seat to what life looks like without it. But I also have come to admit (which I think is also healthy in its own way) that both Steve and I have difficult roles in this new world order. The trick, I suppose, is to carry out our assignments with grace and gratitude. Some days I think we do and some days I know we don’t…but we’re trying.
Thankfully,
Bo
P.S. We are getting great advice and counsel from professionals and from people who have walked this road ahead of us as we make decisions for the future in terms of sharing the caregiving load. For now, though, we feel good about the makeshift system we’ve built in spite of the challenges.
Each time you post, the love grows deeper for you and Steve.
yup. well said – again, Bo. By the grace of God, I am healthy and good at grocery shopping : ) Please let me know when I may help, ok? love you guys! (and gals :)!
Hi Bo — I am an ‘old’ friend of Jeannie Hignell’s. She has shared her love and admiration for you many times. Wanted you to know that there is someone in Chico praying for you. Your words are a blessing.
Grace should be your middle name now……not guilt.
Bo G. Stern sounds good. Thanks again for sharing. So good to get into your heart this morning.
I love your candid writing Bo. Sounds like you are human, with an amazing ability to be honest.
I am not walking the same path, but my husband has his own health issues. And you’re very right. The guilt can be compounded when you genuinely get exhausted by the extra emotional toll it takes on you and you think you shouldn’t be tired.
You spoke at a women’s retreat years ago and I’ve never forgotten your message. I’ve been in church my whole life and heard a bizillion messages. I forget most of them. But, you spoke with such candor and honesty and I have never forgotten you. Transperancy is such a beautiful thing.
This is so beautiful and leaves me with tears. God bless you dear Bo. What a blessing you are to so many. I will be praying for your family.
Well said…….
Love you 🙂
Amen Bo !
Hi Bo,
My Father was diagnosed with ALS in March of 2011. A good friend of mine sent me a link to your blog as he knew it would be worthy of my following. I must say that my whole Family can relate to exactly what your saying regarding the guilt feeling. My father has worked very hard his whole life and has worked for the same company for about 20 years now. It has been awful to watch him slow down because he enjoyed his work soo much. He is only able to work for a couple hours a day now as he gets very tired and has to rest for the better part of the day. This has been especially hard on my mother as she is an avid runner and excercisor and she hates to see him stuck inside, even though he is getting much needed rest. It’s a horrible battle.
I basically wanted to write you to say thank you for speaking your mind clearly and accurately when it come to the pain and heartache that we face everyday.
I hope that my mom will take the time to follow your blog as this will be very beneficial for her to here from another caregiver dealing with the same awful disease.
God Bless,
Thanks so much for the comment, Ryan. I’m so sorry about your dad. It’s a difficult journey, for sure, but I’m happy for him that he has a wonderful family for support and strength. Please tell your mom to email me any time if she would like to – there’s strength in numbers I think! bolovesjoe@gmail.com.
Blessings,
Bo
Hugs, Ryan. 🙂 Always here for you and the family.
I wanted to drop a note of thanks. Thanks for sharing the other battle front-that of the spouse of the one with ALS. I sometimes lose sight of how much my beautiful wife endures. Thanks again, Doug.
Thank you for the note, Doug – please tell your wife I’d love to hear from her if she wants to drop an email my way at bolovesjoe@gmail.com.
Hi Bo,
I can empathize with how you feel. I remember my dad being bitter over watching shows like the biggest loser because they would “complain” about how they “can’t move, can’t do it, etc”…my dad would have loved to have been in their shoes he would say. I also understand the feeling of guilt. I hated telling my dad how busy I was or what I was up to – it was just very difficult for him to hear.
My dad had a very different, and unique perspective on life – it really was negative unfortunately with moments of positive thinking . Very different than how I imagine Steve looks at life (thank goodness!) Regardless, I admire you putting words to your feelings and I appreciate you exposing the bitter side of being a caregiver, and the healthy one.
Many hugs to you and the fam!
Bless you, Danielle. I miss you, sister, and I love your new name! Congratulations on your marriage!