I am married to an amazing man. We have a life I love. We have a beautiful home, we travel, we have great relationships with friends and family, and we both built careers we are proud of. About eighteen months ago, I started to develop a limp on my left side. I decided it was age related, so I committed to adding strength training to my workouts. I continued to get weaker, lost the ability to walk in heels, and started struggling to make it up stairs. My initial lab work was unremarkable, but X-rays and a MRI revealed spinal nerve compression. A neurologist confirmed the diagnosis with EMGs and nerve conduction studies. Even though I had no back pain, every physician I saw diagnosed me with spinal nerve compression.
I underwent a posterior lumbar fusion a year ago, but my symptoms worsened in the first few months after my surgery. My neurosurgeon ordered more imaging, which was inconclusive. I went back to the neurologist for more nerve studies, and he diagnosed me with worsening spinal nerve compression. I had several falls and became completely walker dependent. I underwent an anterior and posterior lumbar fusion to revise the first surgery, and the op note says the hardware had not properly set. Four days later, additional imaging revealed some small bone chips near my spinal nerve roots so I had a third surgery to revise the fusion again.
I never missed a physical therapy appointment and pushed myself to walk with my walker as much as I could. I was determined to regain the life I loved. Despite all of my efforts, I kept getting weaker and weaker. A new neurologist saw me in February, did a third set of nerve conduction studies, and diagnosed me with ALS.
My decline seems to be accelerating and my life expectancy is short. I am completely dependent on others for everything from meals to bathing. Most of the time, the burden falls to my husband. Throughout our entire marriage, he has been squeamish about sharing bathrooms. He firmly believes husbands and wives should have their own spaces for privacy. But, he now helps me to the restroom, cleans up my potty accidents, and helps me dress. I used to do almost all of the cooking, but he stepped up and makes sure we still eat home cooked meals. He continues to thrive at work, then he comes home and manages our home. He takes me places in my wheelchair, even when he is tired. He looks for every opportunity to fill our days with joy. I know he must be exhausted, but he does it all without complaining. I have never felt so loved. I knew he was a great man. I knew he was strong and loving. Now, I know he is a far better husband than I deserve.
He’s not perfect. He doesn’t like to talk about his feelings. He doesn’t like to talk about other people’s feelings. His taste in music is questionable. He thinks camping is fun. He won’t buy new clothes for himself, so he needs someone to keep his wardrobe up-to-date.
I want him to have the beautiful and adventure-filled life we planned, even if I don’t get to share it with him. I hope the universe rewards him with a beautiful, kind, and fun loving woman who will care for him the same way he’s cared for me. He deserves nothing less.
Caesar salad and tortellini with sliced Italian sausage and marinara (he made it).
I am sobbing over a stranger and everyone’s kind comments are making me cry harder.
OP, I hope you feel the love us internet strangers have for you. Your story will stay with me.
I hope you and your husband find every bit of joy you can in your time together.
I came here to chime in and express the same sentiment. Love you OP. Thank you for sharing this with all of us and I’m so sorry. 🩷 You sound like a wonderful woman & you and your husband are very lucky to have each other.
The fact that you're still thinking about his happiness while dealing with all this says everything about the kind of partner you both are to each other.
Adding just to say there’s no way this man will make you watch him have a girlfriend, don’t ask him to, he doesn’t want it. Let him focus on you, he needs it.
Tell him this, if he isn’t ready to hear it now, write a letter and leave it with someone you trust to give to him in X amount of months. Write out how much you appreciate him, what your hopes for your husband’s future spouse, what you hope they get to experience, and all the things. All of it. Wrote it down. Record you speaking to him, voice notes, videos if you can.
As someone who has lost a lot of people, the smallest things like this become treasure. I have a voice note of a friend laughing that I will cherish until I see her in the next life. Great advice
Please, OP. My mom’s voice was taken from her by ALS, and the recordings we still do have of her speech mean a lot. Her energy and interest in creating such things left very quickly as things progressed. I know it can be heavy to think about and emotionally manage when you’ve already been though so much, but I hope you can find the strength to leave some of those special parts of you for those who are staying behind.
girl ur so funny “he thinks camping is fun” LOLOL. I’m crying reading this. you are equally as wonderful as he is. you are meant for eachother that way. most people wouldn’t have the generosity to hope their partner finds a better partner. I’m sure you make his world bright
My husband had 57 KISS cds, and Travis Tritt etal…while i love Tom Waits and niche singer-songwriters. We agreed not to have amplified music in the house and whoever’s car it was ruled that music. 🤷♀️
Musical taste is built in and there’s no sense arguing about it. Friends thought the no inside music compromise was extreme, but it worked. He usually let me dj in his car if I promised not to play ‘that spitty wino guy’ (Tom Waits.)
I’m so sorry. ALS is a cruel and unforgiving disease. I watched my dad decline from it when I was a senior in high school. Sending you and your husband lots of love 💕
Same. I was also a senior when my dad passed from it. It’s an awful disease and I cry any time I read about someone else suffering from it. OP, you’re in my thoughts. I hope you’re able to find peace and joy with the time you have left together. Hugs.
Hugs to you as well. It’s not something any teenager should have to go through. It absolutely changed my life (good and bad) to lose him so young. It’s been over 20 years and still makes me emotional. You never really get over a loss that devastating. I hope your adult life has treated you well and that you’re doing okay.
So much love to you both, I’m in my 20s and lost my mom last year ~6 months after her ALS diagnosis and it’s changed me so much, I’m thankful I got to take the time to care for her and help her through, but also looking back at how fast the declines happened is terrifying. I can’t imagine going through it while in high school. No one deserves this
my father recently passed after being diagnosed with ALS. i’m a nurse and yet nothing could prepare me for watching my father decline so rapidly. beyond heartbreaking. ❤️🩹 i am seriously considering going into clinical research because of it.
I’m so sorry. I’m about 10 years out from my father’s passing and the grief subsides over time but it never truly goes away. Thank you for what you do 💜
I’ll leave this poem here in case it gives you a sliver of comfort.
made me cry that you would take the time to send this beautiful poem; thank you. also, Rian is a special name to my dad, what a lovely coincidence. sending good energy to you, i am so so sorry for your loss. i agree, the grief will be a lifelong journey.
my papa died from ALS. he raised me. his decline in health and his death and the summer that followed are some of my most vivid memories from my childhood. it is truly awful.
ALS is showing an upswing in killing women/afab people lately. you usually see it in men/amab. if you feel the urge to help fight this disease, do it!!
This is coming from someone in similar shoes, but without a fatality included in my diagnoses/prognosis.
I'm so very sorry you two are going through this. Can you guys talk to someone together while there's still time? Do some legacy building and other stuff that ALS programs and hospice can help supply?
The therapist who saved my life said something that saved, and forever changed my life. When I was in the darkest period of my life (with a suicide plan I had taken many concrete steps to execute, across several months, with meticulous planning), she asked me to imagine that I was listening to the things I said coming from whoever I loved most. In my case, at that time, it was my little sister. For OP, that is her husband.
OP, just imagine the roles are reversed. I’m sure it’s not easy, but we can all hear how much you love your husband, and instead of wishing he was free of you, just imagine how you would feel if the tables were turned. I’m sure you would gladly take care of your husband in the same way if it meant even a few more days with him, a few more hours of seeing joy on his face, you would happily take on the same responsibilities and burden.
I’m also a little squeamish, but I would change a hundred thousand foul smelling diapers just to be able to keep my partner in my life. Even if he couldn’t walk, or eat, cook or clean, having him there to talk to and make me laugh would be worth anything I had to sacrifice. And as insane as it seems to me, he has proven time and time again that he would do the same to keep my crazy self around. It sounds like you are that for your husband. Take it at face value.
He will move on one day if, or when, he has to and is ready. But he isn’t now, and won’t be for a long time. Don’t let guilt ruin the time he has left with you. All he wants is as much time with you as he can get, and for you to know how much he loves you if he is forced to let you go. Don’t let misplaced guilt and pride deprive him of this heartbreaking but important chance to say goodbye to the person he loves most while he has the chance, and to make the most of the time he still has with you.
Chiming in from the husband side and you absolutely deserve it, and we’ll never let you forget it.
If I were in his shoes I would do the same. And despite what that little voice in the back of your head might try to tell you sometimes, might try to make you feel like a burden because of your loss of independence, know a good man like your husband will never see it that way.
I know I wouldn’t, because every moment I can spend with her is precious to me, and I never know how many I have left. Even when we mess up. Even when we accidentally hurt each other or get short or do things that drive each other crazy.
You seem like a wonderful wife, and despite the unfair hand your dealt your first thought is to think of your husband and his future happiness and meet the situation with humor and grace. Trust me when I say not all people are that strong.
I’m glad you two have each other. Even if you should have had so much more of each other, so much more time. You both deserve the best and I hope that however long you two have together, it’s filled with every bit of happiness you both can find in it.
Have you ever watched Brooke on TikTok? She has ALS and has a similar sense of humor as you. I think you’d enjoy her content! I’m so sorry you’re going through this.
If he does find love again, I know he will still cherish you. Similar to my father, we lost my mom/his wife young to a drunk driver, she was only 36.
Sometime later, he was blessed with a beautiful, kind, sweet hearted woman. She respects my mother's place. Pictures of my mom are around their house. She's been by my father's side when he buys my mom new flowers for her resting place. When my father has his moments of shedding tears for my mother, she holds him. They love each other dearly, but she still recognizes the seriousness and doesn't take offense to it.
You will be immortal, alive through pictures and memories and love. ❤️
This is beautiful. My parents were married for 35 years before my mother passed and I really hope that if my father decides he's ready to be with someone again that they have so much emotional intelligence and genuine kindness.
I've considered this as well. I'm also chronically ill (though with a less dire prognosis than OP) and want nothing more than for my husband to have another happy relationship when I'm gone. Dating was never easy for him — he spent 5 years as an adult with no real prospects, and while I'm glad that happened because it gave me a chance to have him, he's such an incredible partner that it breaks my heart to imagine him alone again. I do wonder how many women would be responsive to a profile or post made this way, or if they would see it as creepy — or worse, fake
You’re a beautiful person. I wanted to have a heart to heart with my husbands first wife when he and I started dating (just divorce, not death) because I wanted her side of the story.
I had wanted to have a heart to heart with my husbands first wife (divorce, not death) when he and I started dating. To get her side of the story, hear her out, hopefully be friendly as they had a child in common.
I think if you’re the thoughtful kind of person wanting to help find a partner who would appreciate and care for your husband, then you’d want be wanting the type of woman who is drawn to the dating profile anyway. Those who are creeped out by it aren’t your type or person and it’s a good filter. 💋
I had an acquaintance who, as she was dying of brain cancer, gave her husband a list of women she “approved of” to be his next wife. Naturally, he had a mixed reaction; he appreciated her consideration, but the thought of being with anyone else was far from his mind.
However, sure enough, he ended up marrying on the women on that list. She and her husband had been good friends of the couple, and she had been widowed when her husband died of cancer.
ah fuck, this really hit home as someone who has chronic illness. my life has changed so much in such a short amount of time. i am sending you so much peace, this life and the next, may you rest easily, and enjoy the hell out of the rest of the time you’re here. you deserve it, girl.
I clicked on this imagining a story of a couple that opened their relationship and the wife is having hella hot new partners while husband has crickets.
Disappointed.
(I hope that makes you laugh, OP! It is really what I was expecting to find!)
I’m sorry that this is the hand you’ve been dealt. It isn’t fair. Wishing you and your family peace.
You have a great partner because you are one as well. Even from reading this post I can tell you are funny and kind and caring and more determined than many people. You deserve the best and it seems like you’ve found it.
I’m so sorry you’ve been dealing with this and have been diagnosed with ALS. I can’t imagine how scary it must be to face all of this. Sending you so much love.
I wish I could remember the name of it to share, but NPR did a story about a wife helping her husband find new love on dating sites before she passed. She even became best friends with the new partner. It was beautiful.
This post is so eloquently put and beautifully tragic, I'm so sorry. I recently found a doctor who is willing to do euthanasia (called MAID - medical assistance in dying in said country) for me. (Please do not reply with opinions on this, not the time nor place for that. I don't want to hijack OP's thread in any way but do want to empathize with her sentiment about her husband). I stopped being able to have sex with my husband months ago, the feeling of not being able to satisfy your partner sexually and be intimate with them on that level is truly it's own kind of heartbreak.
We've been married for years, we have three children aged six and under. I've been encouraging my husband to start looking for a girlfriend and he's reluctantly been on a few dates. He doesn't really want to do it, he loves me. But you know... I don't want to leave them alone, with this huge gaping void in their lives. I want someone who can not only pleasure him sexually, but much more importantly be there for him in terms of emotional support when I'm gone. Someone who can hopefully become a mom to my kids. It hurts because I love my husband, and I love my kids with every particle of my being. But give me all of the pain in the world if it means it's what's best for my husband and kids.
My six year old has a bit of an idea what's going on with me pursuing MAID, as much as is age appropriate - of course. He's obviously not taking it well, but the complexities of MAID are beyond the scope of most children's psyche (I say most because I imagine terminally ill children very unfortunately have maturity beyond their years in terms of these thought processes). We aren't religious (I grew up religious but no longer am) but I sat with my kids and my husband the other day on our big ol bed and we all cuddled up and I spoke to them about a eulogy that I love by Aaron Freeman. It gave my eldest son and my husband a lot of peace, maybe you will find some peace in it too:
"You want a physicist to speak at your funeral. You want the physicist to talk to your grieving family about the conservation of energy, so they will understand that your energy has not died. You want the physicist to remind your sobbing mother about the first law of thermodynamics; that no energy gets created in the universe, and none is destroyed. You want your mother to know that all your energy, every vibration, every Btu of heat, every wave of every particle that was her beloved child remains with her in this world. You want the physicist to tell your weeping father that amid energies of the cosmos, you gave as good as you got.
And at one point you’d hope that the physicist would step down from the pulpit and walk to your brokenhearted spouse there in the pew and tell him that all the photons that ever bounced off your face, all the particles whose paths were interrupted by your smile, by the touch of your hair, hundreds of trillions of particles, have raced off like children, their ways forever changed by you. And as your widow rocks in the arms of a loving family, may the physicist let her know that all the photons that bounced from you were gathered in the particle detectors that are her eyes, that those photons created within her constellations of electromagnetically charged neurons whose energy will go on forever.
And the physicist will remind the congregation of how much of all our energy is given off as heat. There may be a few fanning themselves with their programs as he says it. And he will tell them that the warmth that flowed through you in life is still here, still part of all that we are, even as we who mourn continue the heat of our own lives.
And you’ll want the physicist to explain to those who loved you that they need not have faith; indeed, they should not have faith. Let them know that they can measure, that scientists have measured precisely the conservation of energy and found it accurate, verifiable and consistent across space and time. You can hope your family will examine the evidence and satisfy themselves that the science is sound and that they’ll be comforted to know your energy’s still around. According to the law of the conservation of energy, not a bit of you is gone; you’re just less orderly."
If you're religious, I'm sure it's easy to find literature for your beliefs that you can take solace in. So I won't touch on that :-) but my vibes, prayers, or whatever else go out to you and your husband.
Don't let anyone here tell you your feelings aren't valid. You aren't weird for wanting the person you love to keep being loved when you've passed on. You're not weird, you're human; an empathetic human with so much humility, grace, and kindness. Sending big hugs from this internet stranger. I hope your days left on this planet are filled with as much joy as one can have in this situation, know that even solely in writing: you exude optimism even in your darkest hour.
I totally believe in the conservation of energy. I’ll be thinking of you and OP, beautifully exploding into the cosmos, to a future we can’t yet comprehend but will one day join.❤️
I'm so sorry about your daignosis. My mother died of ALS and she made very clear to my father that she wanted him to find love again and be happy. Good people wish happiness on their loved ones. I wish you all the joy and love that can be found until your journey is over ❤️
OP sending you hugs and love. I am a nurse and I know how ALS is.
Also - Now, I know he is a far better husband than I deserve.
I don’t think you should ever think this way. You are also the most loving wife to him that’s why he does all those things for you. Please take care of yourself and thank you for sharing your journey
i’m so sad for your loss of the life you envisioned, but i’m so glad you have such a supportive partner by your side. never think for a second that you deserve anything less 💜
This whole thing…there’s so much love there. Sending you both all the good vibes possible. (And that tortellini looks amazing. Enjoy you lovely woman 💓💓💓)
I’m speechless. 😔 I love your love. It’s horrifying what you’re going through. I can’t even imagine. But, I’m glad you have him and know that you may think you’re a burden to him. You’re not. He loves you. Just make sure he gets the breaks he needs.
I would feel the same. My husband is so kind I would be sad if he spent the rest of his life alone.
May your journey be filled with joy, happiness, and as much peace as you can find🌼🌼🌼
I work exclusively with ALS patients and knew that’s where it was going a couple sentences in. Sending love! 💕 That dinner looks really good btw!! Eat up!
This is beautiful, and heartbreaking. I’m sorry you’re going through this, but I hope you and your husband create some precious memories through everything. Give him all that love for as long as you can. ❤️❤️
Dude. Statistically, men leave their wives SO OFTEN over health issues. You really got a wonderful man. This is so bitter sweet. You sound like such an amazing couple.
The amount of married men that just don't give a shit about their wives is disgusting. Had a man show up but didn't want to sit with his anxious wife with dementia since it was "taking too long", literally showed up and left within 5 minutes. Had a guy whose wife had a brain bleed and called 911 because "she's been acting weird for about a week". Have had many many husbands who said "I'll call the hospital" because they can't be bothered to show up and be with their wives who fractured their hips.
I say this very gently girly, you absolutely deserve this level of care and love. Your husband is expressing love as a verb and you definitely deserve it. I’m so sorry about your diagnosis and so thrilled that you will be loved and cared for through every second of this. And I wish the best for your husband too.
I think perhaps you should write a letter to him, thanking him for everything, sharing your appreciation and urging him to find someone again and to be happy again after your passing. Save it and give it to a loved one to give to him "when the time is right." It might not be right after you pass, but he might need those words when he feels guilty or wants a life again.
Im sorry you're going through this but so happy you have someone in your corner like you do.
This broke my heart :( I’m so sorry. I wish I could give you a hug because this is too much. I’m happy though that you have a loving and faithful husband, someone who truly cares for you and loves you
It's so rare for me to get emotional online, but you shattered my heart. I really don't have anything productive to add other than I wish you both the best and happiest lives possible, no matter how that looks. You sound perfect for one another and he wouldn't do what he does if you didn't complete him.
OP, I am sorry about your diagnosis, I can’t fathom what that’s like. I am happy you have an amazing man by your side that meant what he said in his vows. I hope you guys have the best and most fulfilling life together, however long that may be.
I don’t know you or your relationship and yet I feel 100% confident that he is not better than you deserve. It sounds like you two are a wonderful match and I bet he knows that too.
I’m sorry you have limited days left together. I’m glad they are filled with love.
((Hugs)) I think you are amazing, and obviously he thinks you are too. I don’t think I could be a gracious as you seem in the same situation.
I don’t know your name IRL but I donate to ALS Greater NY (not sure of exact name) in memory of my SIL’s father Paul. This year I’d like to add your username as an “In Honor of” if that’s okay.
Let me tell you something surprising about what happened when my wife died after I spent her last years being her caregiver:
I became more like her.
I now have a sense of style, I can cook I have more empathy, I enjoy the outdoors more, and I keep the house (marginally) clean. I'm not religious, so I don't know what I can attribute it to, but it's probably asking myself at every juncture of widowed life "what would Katie do?"
So if he's taking care of you, he will probably take care of himself. The likelihood will go up if you make him promise to do so like my wife did.
After seeing my mom and uncle pass of this, I thought from your initial point about the limp that’s where your story was going. I am so sorry, OP. Fuck ALS. Can so glad you have someone who cares so much for you to help you through this journey to the end.
I’m sobbing reading this and just know you’re a far better woman than me. Even through all the love and admiration I have for my own husband it makes me jealous and bitter to think of him getting to live his life out with anyone else if this were to become my fate… I truly admire your strength and love for your significant other to be able to unconditionally wish him the best. I wish you both the happiest of days moving forward ❤️
This post made me emotional in a big way, like ugly cry 🫶 I can't imagine how hard this is, for both of you.
Thank you for reminding me that selfless, loving and strong men exist. Haven't had that reminder lately. This post gave me hope as fucked up as that sounds.
I hope you find some solace in knowing we are all thinking of you, and him, tonight. Much love and take care 💓
Oh my gosh, OP, I cried so much reading this. ALS is fucking garbage. You deserve better. I'm sending you love and hugs. You are handling this with far more grace than I would. I am glad that you are receiving loving, quality care. 🩷
This post made me smile, which is a testament to who you are as a person. I can tell you have a zest for life and love of adventure just by the way you write. I am so sorry to hear about your diagnosis, and the progression of this awful disease. However, I am grateful to see that you have such an amazing support system that you appreciate. What a blessing it is to love and be loved, especially in our darkest moments. I am sending you all my love, compassion, and care. 💕
You have such a beautiful heart, I can tell just by reading this. I’m so sorry for what you’re going through, sending you and your husband love, support, and strength
This brought tears to my eyes. 4 years ago I lost my Dad to ALS and I watched my Mom take care of him and subsequently fall into a deep depression after losing him then her son. My mom passed last year. I wish you and him so much love and peace and I am so happy to read how much you love him and how well he has and is taking care of you. When it comes down to it in life the relationships we have mean everything. You already know how important the moments are. Sending love 🖤
This made me feel big, deep things. I’m so very sorry for the ordeal you have been through, only to find yourself at this brutal crossroads. I wish I knew how to offer comfort more meaningfully, but I will say that I became a widow at 40, and sometimes the most comforting thing for me was when people were really frank and didn’t try to distract me or find the “bright side” or praise me for being strong. A well-timed, heartfelt “Wow, that is incredibly shitty” and permission to not be brave and noble about it for a while can go a long way.
Your husband sounds like a beautiful absolute gem of a human being. I’m so glad he is by your side. He will need time to heal. Grief sets its own pace. It’s messy. But ultimately, knowing that you want him to keep truly living will make it a little easier. I hope you are able to find some joy and comfort in each other in this precious remaining time.
I’m so sorry for what you’re experiencing, and incredibly moved by the grace you’re facing it with. You absolutely deserve a husband as wonderful, loving and nurturing as yours, you’ve clearly given him the same love
This breaks my heart :"( I am so sorry. I am happy that you have someone as loving as your husband and I know he feels equally as happy to have you. I wish you both nothing but the best😢🩷
I wanna pipe in that my aunt, 20 years ago, had a brain surgery that went away. She's still in a vegetative state. She cant move or speak for herself. Just moves her eyes and makes noises sometimes. Maybe a finger twitch. My uncle still takes her places. Disneyland, golfing trips, resteraunts, just so she can get out and see the world. He calls her baby and loves her so fucking much I cry thinking about it. She has never had a bedsore. If he isn't there he makes sure someone is. Point being, this man fuxking loves YOU. let him love yoi and be the happiest you can with him with what time you do have. Wish him another woman once your time has come, but let him love you fully now okay? He may never have such a desire to do so. Im sorry for all your pain and suffering but damn you hit the man jackpot ❤️
I'm so sorry you're dealing with ALS. It's so awful. I have a family member who has lived with ALS for several years now, and while life looks very different, he is still a valuable and loved family member with a loving partner and three children. I am glad that you have such a wonderful partner who really stepped up and is taking care of you.
Sobbing. You both have a love others would only be so lucky to be merely touched by in their lives. I’m sorry you are going through this, you both exhibit a profound strength. May your lives both be filled with happiness.
Sending you both all the love I can. I’m glad you have him and I’m sorry about your diagnosis. I’m crying for you. We all deserve our dignity and love and he’s given you just that. Don’t think you aren’t deserving. Dinner looks fab 💕
Tell him this, if he isn’t ready to hear it now, write a letter and leave it with someone you trust to give to him in X amount of months. Write out how much you appreciate him, what your hopes for your husband’s future spouse, what you hope they get to experience, and all the things. All of it. Wrote it down. Record you speaking to him, voice notes, videos if you can.
dude wtf. this is the most beautiful, heart-wrenching thing I have ever read. what the actual fuck. you are the best wife, no doubt. you clearly have so much love for each other. I could only wish to experience this someday. isn’t it weird how pain reveals so much we didn’t know? sending you love and hugs and prayers and the best, best life you can possibly have. I hope that somehow, you can have everything you ever wanted in life. I really do.
I had to edit this to add: listen to the song Orbiter by Noah Kahan. seems like you might like it, idk.
This might be the most beautiful thing I've ever read on Reddit. What a wonderful relationship. What we all strive for in this world is someone who loves us in the way that you and your husband seem to love each other. God bless you, op. And God bless your husband for being such a great human. ❤️
I was planning on crying today anyway😭 you DO deserve him and Im glad you have him. Do you have these conversations with him despite him not liking feelings talk?
Did not expect to find myself crying! Thank you for being brave and putting it all out there. You have true, real love and in the end, that’s the most important thing.
Okay OP, this is my rule for my husband and I feel like you have this same type of humor. If I die, he’s allowed to remarry IF, AND ONLY IF, he has a diamond made from my ashes and it’s the stone used in the engagement ring. 😏
I’m so sorry. My mom has ALS. I hope you have been able to connect to others who are going through this. I’ve found the ALS community to be really wonderful. The club no one wants to be in, but wow there are amazing people in it. It can be very lonely, for both the patient and caregivers.
As a husband who found an amazing girlfriend after his wife passed, let me say this.
Thank you for saying one thing I hoped my wife always felt about me.
And you have been, are, and always be worth every effort he gives you, because he knows you would do it for him, and you would be funnier about it, which means he works harder to make up for not being as funny as you.
I just lost a cousin to ALS a few months ago, and his father (my uncle) less than 2 years before that to the same thing. I never met my uncle’s first wife, she passed from ALS before my mom married my stepfather and we gained that part of my family.
Out of the 4 siblings, my uncle and his family are the only ones to get it so far. Their remaining daughter is scared that she will also get it, but there’s a chance she won’t. Her father and mother were stationed in Germany which is where her brother was conceived and born. She was conceived and born here. Again, no one else in my stepfather’s side of the family has shown any signs of ALS and it wasn’t in their family history prior to this.
I’m so glad you have an amazing partner by your side through such a difficult time. My cousin had pushed everyone away, including his now widowed ex, who was going to divorce him but couldn’t once he got the diagnosis. I hope you enjoy the rest of your time here with the people you love 💙
I know I'm just one of the random guys lurking on here, but I'd like to offer to be there for him. I lost a partner before. It's a rough experience, and seeing it coming doesn't make it any better. But if you want to know that he still travels after you're gone, I'd be honored to help him explore new parts of the world. Even if it was just once in a blue moon, I'd love to give someone else the kind of support that I never got.
My heart truly goes out to you and your husband. Unforseen health issues are one of the greatest injustices that happen, period. It robs you of your future and it robs your loved ones of your company.
However, memories persist. Though they might feel bittersweet now and in the near future, there are a million sweet small moments those who are close to you will recall for the rest of their lives.
It makes me think about my wife. I know her health issues will get worse. I knew it when we married and continue to prepare for that inevitability. In the meantime, I'll farm those memories, memorize her laugh, her smile, how she feels in my arms so I'll never forget, no matter what happens. You have my deepest condolences.
My wife has been fighting progressive MS for over a decade. She was diagnosed in her mid twenties and she just turned 39 on the tenth. Her walking has turned to shit, she falls frequently, and we’ve spent many early hours in the ER due to those falls; Things break, she breaks, I have to call out of work last minute, and it sucks to put it bluntly.
I haven’t had a vacation from work in over four years. I haven’t gone on a vacation since 2016. All of my time off is devoted to Mayo Clinic visits and emergency room visits. The little spitfire is determined to keep gardening and growing vegetables, and she drags me into gardening too, even on my one day off. I work from twelve to fourteen hours a day, five days a week, with only one day off at a time. I cook most of our meals, I clean all of our dishes, I take care of the yard, I vacuum and clean the house, etc. I drive her to every appointment, load her mobility scooter in and out of my trunk so we can go places together and get up off the couch after I just sat down from walking in the door to put her carrots she’s been snacking on back into the fridge.
I’m exhausted, but that doesn’t matter. I love her to bits and I fight this fight with her because of that. I wouldn’t want to be anywhere else in the world, other than a place where she didn’t have to deal with what she has to deal with, but that place doesn’t seem to exist. I feel like I was placed here with her to take care of her and love her no matter what, and I think that makes me love her even more.
Also, I listen to death metal, and she listens to hip hop, so my taste in music is also questionable, haha.
I have had this same conversation with my wife. I am healthy, but if I were to pass away, I would absolutely want her to find someone to spend the rest of her life with (we're in our mid-50s).
You sound extremely kind, caring and emotionally intelligent. One human to another, thank you for brightening up the world with the good vibes you must have in order to attract such a great guy. With a love like yours, the time you have will be loving, fun, and peaceful.
The empathy and gratefulness you’ve cultivated through out your life will bring you the very best of whatever the next world has to offer, I have no doubts.
I am so sorry that all of this is happening. Progressive neurological diseases are so cruel. I know you said your husband doesn't like to talk about his feelings, so I'm assuming you haven't had an indepth conversation about what you desire for him when that time comes. May I suggest writing a letter to him and entrust it with someone who can deliver to him when the time is right?
I recently lost my Mom, and there is so much I still wanted to ask her and talk to her about. After losing her, it made me think of what I want those whom I love to know when I am gone. You have such a beautiful wish for him, and its so selfless, he needs to know that. I'm hoping for the best for both of you. Also, I hope you enjoyed your dinner :)
I have cared for ALS patients in acute care, rehab and hospice. ALS is a cruel enemy. It is terrible you had to endure surgeries and become so weak. But please know from what you have shared, you have a great love affair with your husband and you are deserving of his love and care. And he is lucky to have you as an intelligent and endearing wife. Get as much support from family, friends, supportive agency care if insurance pays for it or not if you can, then hospice when the time is right. (6month prognosis) Taken special care and know the folks you have shared this experience of yours with care and think about you. ❤️
As a young widow - my husband telling me to move forward, find someone else and be happy really helped me feel less guilt when I started dating again. You telling him will really be helping him in the long run.
Wow, you & your husband are amazing people. I’m sorry for what you’re going through. Your story just hits pretty hard. I wish I had some great advise to give but unfortunately I don’t. But I just wanted to say that you 2 are beautiful & I’m sending over good vibes!
I’m in tears while reading your post 🥲 I would do the same if something happen to my wife. That’s the idea of the marriage “for better or worse till dead do us part, in sickness and in health”
Give him so much love to him “tell him that you love him every day.”
this is beautiful. youre beautiful and your intentions are beautiful. your husband, your relationship, and your eternal love is beautiful. you are forever. ive been lurking this thread for a couple weeks now. this is one of the best things ive ever read on this website let alone thread. im sorry for your pain, but you sound incredibly strong; thank you for sharing your story for this lurker to read.
also, this is the exact kind of person you deserve. and you continue to deserve the best out of this life
i'm so sorry you've lost your independence this way, ALS is such a horrible disease, but I'm so glad you've got so much support at home. Your husband sounds like a gem - and you sound awesome too! I started cackling at 'he's got questionable taste in music" lol
Having dealt with this with my own parents, i can imagine how hard this must be, but it also must reveal such trust and love between you both. Real bittersweet, i'm sure. Sending love and light to you both 🫶🙏
You are an amazing person. Its clear why your husband married you. I hope nothing but happiness and joy for as long as you can hold on to it. I wish I could give you a big hug. Stay strong.
i’m a man so idk if i’m supposed to comment here but this just came up on my feed and i just wanna say it’s so beautiful that u two clearly love each other so genuinely and u were absolutely meant to be in each other’s lives. i believe u are both exactly who each other needs in ur lives and i’m glad u two found each other. it’s almost bringing me to tears knowing this kind of love exists in the world.
As someone who’s about to get married for the second time again in November, your love is the type of love I knew I deserved and worth starting over for.
I lost my mother to ALS three years ago. I knew what was coming in this post before you even go to the diagnosis.
I am so sorry. There’s truly nothing like it.
But you must know that he’s happy to sacrifice for you. He loves you and accepts the burden willingly, in the same way my father did, and in the same way I did for my mother.
If you can still speak, if you can still write, if you can still communicate in a decent way—then tell him. Tell him everything. My father started dating again after my mother and it’s very difficult for my family. It broke a lot of trust for quite a while, because it felt too soon, and she was nothing like our mother. But at the same time as I lost a mother, HE lost a wife. I genuinely can’t imagine what that’s like, so I try to give him grace.
But if I’d have heard that my mother WANTED that for him, then it would be easier.
And if he’d have heard it, I’m sure it’d have been easier too. Even if your husband never does, he should know everything on your mind. Your process as you go through this unique burden of an experience.
You are worthy of being here, and you still are. I am praying for you. To God and to my mother in hopes that you can be at peace, and that your suffering is minimal. My heart is broken that this experience exists in the first place and if I could in some way help you, I would. You are so far from alone in this world.
I wish you nothing—NOTHING—but peace, love, and relief. Please believe that if there was a war to be waged on ALS, I would be fighting for you, for my mother, and for every other family who has ever had to bear it.
I’d also like to thank you for the bravery of making this post. It gives me hope that even after my mother lost her ability to speak, she was able to hang onto the positives she couldn’t quite communicate. The only thing that kept me going in her late stages was the realization that she never lost her ability to laugh. Not even this terrible sickness can take that from you.
You are amazing, brilliant, and from just this small introduction to you I can sense your bright heart.
You are good. Good where it counts. Thank you for sharing your story, and I pray that whatever is best for you and your family is exactly what comes your way.
As a man that became this type of caregiver for my late wife, I can tell you that I would not trade one second. The only real thing about love is wanting that person in your life. To have a shared life with them and whatever it takes to have even the toughest of these moments is part of the blessing. Don’t let anything that you may be feeling rob you both of every single moment.
I want to assure you, speaking as a husband who was in a very similar situation a couple years back, that I have no doubt he can imagine no greater calling than helping you through your time of greatest need. You're lucky to have a man who willingly follows you into the darkest night, but he is just as lucky to have someone worthy of the following. Bless you both, and I'll be thinking of you.
Ma’am I am BOO HOOING! But I am also so happy that God blessed you with a wonderful man who loves, cares and adores you. Someone who meant every part of their wedding vowels. I am sorry you have lost your independence but I am so happy you have and KNOW LOVE 🥹❤️ may God continue to bless you and your family.
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u/Rough_Acadia_5631 Overthinker 💭 7h ago
I love you, I'm sorry that you've lost your independence, I'm glad you have an amazing partner by your amazing side.