Rob is out of town this week, and my parents are here to help. They’re sleeping separately, my mom in the guest bedroom and my dad on the couch outside my bedroom, so he can hear me through my mask if I need help in the middle of the night. Which I always do. My body can’t stay in one position comfortably for hours on end, so somewhere around 2am I call out for an adjustment. Then again around 4. It makes me so unhappy to need this kind of help that I sort of act like a jerk about it. I’m not proud to admit that, but there you have it. Everyone around me is sleep deprived. All the time. But they seem to be handling it better than I am.
Let me tell you something that you probably didn’t know. You have not LIVED until you are an adult whose parents have to put you to bed. My parents have held this distinct honor for the past three nights. They stood over me, at the foot of my bed, wrapping Velcro braces around my feet to keep my ankles straight. I tried to close my eyes, wishing to be somewhere else, hating how this twisted disease is destroying all the normalcy in my relationships. I watched the two of them fussing over me, checking with each other on what to do next, consulting notes they’d made after a bedtime training session with Rob.
As this transpired, I felt my annoyance fade, replaced by a momentary flood of warmth for my mom and dad. As if maybe this is what it was like when I was a baby, their first, and they hovered over my crib, discussing what the doctor had advised, moving my little body to make it comfortable. I pictured my baby-self criticizing them for everything they were doing wrong. I saw how unpleasant (also precocious!) that would have been, and I tried to keep my adult-self silent as they wrangled sheets and smoothed a comforter over me. As my dad used a remote to raise my adjustable bed and fit the breathing mask over my face.
But it was still so hard, and my annoyance wasn’t gone for long. I’m not a baby, but in so many ways, I need to be handled like one. Yet I’m expected to conduct myself like a grown-up. I am straddling two worlds: an intellectual one where I’m still in control and a physical one where I’m almost completely helpless. It’s not compatible with being my kindest self, and usually the best I can hope for is to shut up and not make it worse by grumbling at the people who are trying to help me. I’m not good at this.
I don’t have the answers for how to make it easier to live like this. I just want Rob to come home, because I’m always more comfortable when he’s the one helping me. It feels somehow more appropriate, though it’s certainly messed up in its own way. I want my parents to enjoy their time—and their sleep—when they visit. To focus on grandparenting.
Being in control of my mind and my body is what would make me happy. Living only in one world, the one in which I can get up and walk away from situations that make me uncomfortable. In that place, I feel like I would be able to access kindness, that critical component to any relationship. That thing that I am sorely lacking at the moment. And the one thing that the people in my life really deserve.
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Oh honey, this post is so hard. My heart aches for your Mom and Dad…..and you!
They love you so much, and would gladly change places with you if only they could. You will always be their beloved baby. I wish it didn’t have to be this way.
I love you sweet woman!
Mary White Thomason
Thank you, Mary! ❤️❤️
You are beautiful. You are important. You are so, so courageous. You are so so loved. You are giving your parents the gift, the HONOR of truly being your parents…again. This is a great gift to them.
You always say what I am feeling. I can’t put into words but you always do.
Thank you
Thank you for having the courage to write your story. I had not read your blog in a while and didn’t realize what has been happening to you. My heart aches for you Sarah and your family. I know you may feel like this is not what they want to be doing but that is the true definition of what family is. You have such great parents, they are doing exactly what they want to do. Love you bunches, cousin Theresa
My husband has a spinal cord injury which has caused his independent functioning to decrease every year. He says a similiar thing to me “I feel like a baby” but that thought doesn’t occur to me as I help him pull on his underwear and pants while he lies in bed. I just feel that I’m helping him. It’s painfull to see him this disabled. I try to talk about something interesting so we are distracted from grim reality. My sister-in-law is Terry Thiese and she always “likes” your postings which is why I get to read them too. You are showing us how to live each day to the fullest extent possible – always a challenge for me. Also, to give me a break and have a backup in case I can’t help him, we have hired a Certified Nursing Assistant to help him with his showers and dressing twice a week – it has turned out to have a positive side effect of another person (man) for Joe to chat with about cars, work, sports, etc.
I hear you, Sarah. I remember my dad saying, “I can come up and take care of you” and me snapping, “I don’t want you to” when what I meant was, “I don’t want you to have to.”
I’ve tried to take something to heart that you said awhile ago — something along the lines of: no one is going to take care of you exactly how you would, but eventually you do yourself a favor and let it go. Easier said than done in the moment, but staying quiet is the best compromise…at least you aren’t adding something to feel guilty about later.
By writing it down, you’re helping them to understand where you’re coming from even if you can’t speak everything you’re thinking. By making it public, you’re helping everyone understand, appreciate their abilities, and for me, knowing I’m not alone in my frustration. You’re not alone either! Just hang in there…
Hugs,
Andrea
Having lost my Mom and two brothers to ALS, I can tell you from my heart that I was grateful for every moment I got to spend with them — the good days and the bad. I could appreciate their frustration and never took it personally. Expressing frustration is not exactly my most flattering character trait either, so with a smile I say, “Thanks Mom! I guess I got it from you. I just hope I’ve inherited even half your inner strength was well.” xo
You have such a strong spirit that it will never be easy to give in to the help that those who love you want to give. You are giving them a gift by letting them be close to you and do whatever they can to re-baby you. So hard to accept, but know that they would never want to be anywhere else but by your side and 2136 miles closer to you. Love you. Working on my donation stained glass for black Friday funraiser.
This post really is in line with what’s happening in our house this week. My husband has ALS and cannot do anything for himself. Our two month old granddaughter has been visiting this week. We have all remarked how similar it is to take care of both of them!
Hang in there – I love reading your posts and know that there are many of us “out here” who keep you and your family in our thoughts and prayers.
I’ve been reading your blog for some time and I know you are full of kindness. Your parents and other loved ones know it too. They are there for by choice, because they love you; ALS cannot take that way. Sending you a virtual hug from someone who has willingly helped a loved one with ALS. Hang in there.
Sarah,
You are an amazing writer and fighter! This particular article struck me as I am in the airport right now coming home from a business trip in California and live in New York. My husband has had ALS for 14 years, since he was 26. His parents did the same as yours and handled things while I was away. It pains me to be gone and to know that he has to endure what you just described. He’s so tolerant of the extra challenges (to say the least) that come when I have to be away. I’ve put my mini me in place (our almost 8 year old daughter) who keeps everyone in check
and is more aware of what her Daddy needs than even his own parents. We are so proud of her for that! We are both raising daughters that will turn into strong and amazing women because of it. As horrible as ALS is, it’s the reason my husband and I found each other.
Thank you for your impactful and inspiring messages of love, hope, perseverance, strength and humor. Keep writing, keep fighting!
Megan
I hate that I love this! My husband was 30 when he was diagnosed with ALS, on Christmas eve. A short 4 years later, he lost his battle. Your blog gives a rare insight into how this disease ravages the patient, friends, and families. I’ll lift you up in my prayers tonight and every night. Thank you!
I want to thank you for your thoughtful and insightful posts.
My brother was diagnosed 5 years ago and we’ve tried a few different ways to help with his communication while sleeping with the mask. You may have already tried this, but my brother used a wireless doorbell as a signal for a while (of course, this depends on current mobility) and now we use a Vtech monitor that has two receivers. These devices have allowed for better sleeping arrangements for my parents and decreased anxiety of not responding when needed.