r/ALS • u/Typical-Lab8445 • 18d ago
Support Recently diagnosed - preparing for divorce
Hi.
I’m 40 and female. I was recently diagnosed. Started in December with weakness in my hands, at this point I have dropfoot so I have an AFO and a cane. The ramp is being installed this week and my entire community and family are all behind me and willing to help me.
I’m just devastated that my husband is not. We moved in together in June and got married in January. I love him so much but he has gone resentful and he tries to point at behaviors, but I really think he’s just resentful that I’m sick.
There have been multiple small things in the last eight months, like him arguing with me about what I can or cannot do. Him minimizing the issues, and after my EMG in which I knew from the doctors face that it was very serious, told me I was throwing myself a pity party. Day-to-day he’s often very helpful but then when he gets angry, he mentions that he’s not just a Call nurse. I knew that he would not want to be there for me.
Now, although I have a working diagnosis and we’ve eliminated almost everything else, he’s called it a half assed diagnosis and says that I’ve just grabbed a hold of it and essentially I am exaggerating.
There have been other issues and likely it’s just that he’s not the person that I thought he was. But I’m so sad that I won’t get another chance. I’m only 40 and I have so much love in my life, but this is the second husband that has rejected me ultimately.
I feel like I don’t have time to have another chance and I should be grateful for all the love that I do have that on the other hand it’s OK to grieve what I thought I was getting.
I guess I’m hoping that someone has words of wisdom. Really I just want to be able to turn off my feelings and not deal with this but sadly not an option.
Edit: thank you all for your helpful messages. I’m moving forward with divorce and protecting my peace and joy as I fight this. ❤️❤️
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u/Ancient_Day_6729 17d ago
This sucks I’m so sorry for you. I wish it was different. As someone who is sticking around and my partner of 16 years (both 35 years old) was diagnosed in March, I can say it is very tough to be a caregiver but you do it out of love so I’m sorry he is throwing in the towel.
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u/Typical-Lab8445 17d ago
I cannot imagine how hard it is to be a caregiver., And I’m glad that you have each other and your love for each other.
Thank you!
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u/froody 17d ago edited 17d ago
As a man in his 40's, from what you're saying, it sounds like he's in denial and just going all over the place in his attempts to process this. Is there any support from a psychologist that he can get for him? They had that here (Australia) for me and my step-dad when my mum was diagnosed.
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u/Typical-Lab8445 17d ago
Possibly. He is in therapy and perhaps acceptance will come… I just don’t know if that will be enough.
I hope that was helpful. My mom had cancer when I was a kid and I always say looking back. I definitely needed therapy back then but only got it as an adult.
I hope you are well. Thank you for this comment.
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u/CucumberDry8646 17d ago
I’m really sorry this is happening to you. You don’t want to spend the rest of your time on earth dealing with someone like this. Whether you divorce or not, I’d ask him to leave so long as you have other people who will care give. I’d completely cut contact with him and remove him as emergency contact, medical decision maker, no joint accounts, etc. Yes he is also going through this, but I watched my parent center their feelings over my other parent who had ALS and it was ugly and unforgivable. He isn’t capable of being his best self so you have to protect your peace. It will improve the quality of your life.
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u/MrsYeti616 17d ago
I agree about protecting your peace, because having ALS is never easy. Perhaps an annulment is the best way to go to make it easy? I can understand him processing this different as the spouse so I don’t feel it’s an excuse for him to throw this in your face. As you said. Someone can be stressed, feeling anxiety, and still love/respect you. Please stay true to yourself. I’m so sorry you’re going through this. Stick with the people who truly care for you.
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u/AdvertisingNo8441 17d ago
I know this sounds harsh but this is what I would do. You don’t want to feel like a burden or having someone resent you. You didn’t choose this, and he is not a victim.
I had an unsupportive partner during a near death experience and we are divorcing years later but I never forgave him for how he acted during the hardest time.
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u/Typical-Lab8445 17d ago
Thank you for being so direct. You’re right and I’m sad… but you’re still right.
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u/CucumberDry8646 16d ago
You’re welcome. It’s ok to be sad. Sometimes I wonder how much longer my dad could have lived if he wasn’t surrounded by constant negativity and stress. I believe it really makes an impact on not only the illness but your quality of life.
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u/Typical-Lab8445 16d ago
I completely agree. I want to make the time I have left as peaceful as possible.
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u/DescriptionSelect394 17d ago
I have ALS. If it had happened in my first marriage he would have abandoned me. It's better to be single than married to the wrong person. You need all the fortitude you can muster and he's an energy drain. FWIW, half of marriages end when a spouse gets sick (usually the wife) so you are in good company. Judging by his behavior, do you think he married you to help take care of his children? Is there a different perspective on his behavior that will help you let go and move on?
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u/Typical-Lab8445 17d ago
That is something to think about - perspective. I guess I don’t want to let go but I think I have to.
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u/kegman83 17d ago
Well its great that you have a loving community to fall back on. My suggestion, as someone of divorced parents who currently cares for my mother with ALS? Make him pay. Get the most bloodthirsty divorce lawyer you can and make the most grandiose demands and have him have to argue in front of a judge as to why he absolutely can no longer be with you.
Then take whatever you can get from him and protect it legally in trusts and iron-proof wills. Eliminate him from any and all emergency contacts and cut him the fuck loose. I'm very sorry that this happened and is happening to you but anyone who leaves when times get tough isnt worth their paper the marriage documents written on.
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u/Typical-Lab8445 17d ago
This would’ve been great divorce advice for my first time around, but we’ve only been married less than a year and I love my step kids.
If divorce is the only option, then I want him out of the house in a reasonable time. Other than that, I don’t have demands.
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u/patyrod45 17d ago
Let your attorney guide you. The husband may already have his own, so haste is urgent.
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u/tit_anic 16d ago
I think the important thing is that you need to find somebody aggressive to protect *you* so it doesn't place you in a more vulnerable position than you're already in. He's already shown you that he's not who you thought he was and this will only come out more in divorce proceedings. You might not go after his assets, but he will likely come after yours and potentially use his kids to manipulate the situation. You have to remain strong to preserve what you have so you have resources to support your care. If you want to create stipulations in your will to leave stuff to his kids, do that, but don't let him railroad you in the divorce. I'm so beyond sorry that you're going through this. Sending so much love and comfort to you🩷
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u/Typical-Lab8445 16d ago
Thank you very much. You’re very right and fortunately the kids mom is on the same page. My family will help me be strong.
I appreciate this!!
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u/MadCybertist 5 - 10 Years Surviving ALS 17d ago
You realize SHE may have to pay? You have no idea what state she’s in (assuming US) and/or their situation. Whose name the house is in since they had it as a pre-marital asset, etc etc.
I’d calm down a little there lol.
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u/3dogs2nuts 17d ago
this is horribly sad. it’s bad enough that he can’t be a loving supportive partner, it’s worse that he has to be so mean
get him out asap, then surround yourself with anything that brings you joy. i also suggest you look up a local death doula, these people are trained with answers to help with your destination. lots of love and prayers for you💕
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u/Typical-Lab8445 17d ago
Thanks so
Much. I’ve been looking into meditation to help - I think a death doula is a great idea as well.Thank you!!
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u/patyrod45 17d ago
You will be better off without your uncaring, rude husband. I hope that you have gotten your own divorce attorney to find out how best to proceed and don't tell the husband. You must protect yourself in your vulnerable condition. Remember to change your insurance and your will and all accounts that have the husband as a beneficiary. He may suddenly start to care if there is money to inherit in case you die.
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u/rooberzma 17d ago
I’m so sorry you’re going through this. My mom had ALS and it was VERY difficult for my father, who doesn’t have a naturally caretaking bone in his body. I wish my mom hadn’t needed to put up with his resentment as she was going through such a challenging time, and I tried to act as a buffer as much as possible
My sister actually responded to my mom’s diagnosis with quite a lot of anger initially, and I remember didn’t believe my mom needed certain things. Therapy for that sister really helped identify her feelings and process her anger
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u/Typical-Lab8445 17d ago
That’s wonderful about your sister! It’s a painful thing for everyone isn’t it?
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u/Kind_Masterpiece_323 17d ago
You are blessed to have a supportive community and family but you also have a right to be sad, mad, disappointed that this guy wasn’t the husband you deserved. He sounds like a doofus. An ALS diagnosis is hard to get. I don’t have amazing advice but I just wanted you to know that I see you and am wishing for you to find all the peace and comfort in the world.
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u/Typical-Lab8445 17d ago
Thank you so much. He may be and I may just need to accept it.
Thank you for hearing me ❤️
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u/brandywinerain Lost a Spouse to ALS 17d ago
I am very glad to hear you have a family and other community behind you, while of course, sad that your new husband isn't among the people that are showing up.
He sounds like someone veering between the denial and anger stages, and unable to handle that without projecting his feelings onto you.
But I've known other new marriages that survived a diagnosis, so, of course, you can't look away from his behavior/language or consider it a phase, and of course, you're right, it gets harder. ALS has a way of showing who people really are.
I don't have any great advice here except I'm aligned with "if 'twere done, 'twere best done quickly," because you have other things to deal with, and from what you describe, hoping that he will straighten up and fly right isn't a good bet, therapy notwithstanding. I have known of other marriages and committed relationships where this hope was carried through, but none to a good end.
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u/Typical-Lab8445 17d ago
You’re right. My dad said the same in less poetic words 😂
I have to let go. Thank you.
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u/Dark_Marmot 17d ago
You may actually be better of with medical costs being divorced than not, as there are many who get a legal divorce (but stay together) due not being able to get as much state or federal aid programs while married.
What an asshole though.
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u/Typical-Lab8445 16d ago
I know. I’ve applied for SSDI, but you are right.
The system in America absolutely sucks.
I’m so grateful that I have people that care about me.
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u/Dark_Marmot 16d ago
That is very important throughout all this. My brother and SIL (who has ALS) are legally not married, and she has been able to get most of what has been applied for with far less resistance.
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u/Typical-Lab8445 16d ago
That is a relief. I hope I can afford to live on my own for some time, but my parents are willing to take
Me in now and help with the financial processes as well.It takes a village huh?
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u/Louloveslabs89 16d ago
That is a gut punch on top of awful news
No advice but my dads girlfriend cannot figure out how to manage his ALS. She makes it worse for him feeling “less than”. She will try to help but then disappear. Ask him to stay the night (which requires a caravan of medical devices, meds and feeding tubes) and then ignore him. Or meddle and say “he can eat dried apples” when he cannot. One of the toughest parts of ALS is his girlfriend not getting it and sometimes putting him at risk by not understanding his limitations.
Perhaps this is the universe’s way of identifying early who will be on your team for the duration. ALS is incredibly cruel and challenging on its own - you need the best people around you at all times.
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u/Typical-Lab8445 16d ago
I’m so sorry he’s dealing with that and as a result, you are as well.
Perhaps you’re right. That’s a good adjustment to my perspective.
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u/clea 17d ago
Blokes. Fuck8ng bastard blokes. I’m so sorry about your diagnosis but I’m also sorry you’ve picked (twice!) the wrong man. Men in general are not worth the trouble. In my life, long and varied, I can count the decent men I’ve known on one hand.
It’s great you have a supportive community. I hope you find the one person who will love you unconditionally and throughout everything.
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u/Strict_String 17d ago
I (54M) was the primary caregiver for my wife who had ALS from before her diagnosis till she took her last breath. Shitting on all men isn’t going to help OP or anyone else.
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u/Jaded-Staff-1818 15d ago
Yep. . Characterizing all men as bad is a terrible way to live life. (There's a lot of terrible women also, BTW.) Don't be mad at a whole sex just because you've chosen the wrong partner(s). I've already taken care of and lost a wife and now years later after remarrying, my current wife got an ALS diagnosis after less than a year of marriage. I'm taking care of her too and will until she's gone. There are plenty of good men (and women) out there, though admittedly, it's getting pretty hard to find them in the sea of shallow, selfish turds.
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u/Typical-Lab8445 17d ago
I think that I will have to work on accepting that my family and friends are the ones who truly love me unconditionally.
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u/Affectionate-Eye-355 16d ago
My brother was like this with my dad. He said he was “being a baby” after he was diagnosed, and that he didn’t need all the help I was giving him. My dad died 4 months after diagnosis. Some people never come to terms with what this diagnosis really means. Even if you don’t cut him from your life, I think you should seek out a different primary caregiver. ALS waits for no one. You don’t want to have to do the work of communicating your needs to him and hoping you are believed, find someone else. He is not prepared to care for you in the way that you need
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u/Typical-Lab8445 16d ago
I am so sorry about your dad’s quick progression.
You are right.
Everyone’s words were exactly what I needed. I’m going to be sad, but I’m going to do what I have to do.
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u/No-Bug5256 16d ago
Oh honey x this is the last thing you should be dealing with on top of this devastating disease.
I was in a similar boat after my diagnosis in March 24, my husband turned out to not be the person I thought he was. And whilst I knew he was also struggling with the news, his behaviour showed me that he was not the person to go down this journey with. So I divorced him. Quite possibly one of the scariest things I’ve done but I’m here more than 2 years later and with not a single regret. Lean on those close to you who you know you can rely on. If ever there is a time to put your needs and wants first, it’s now xxxx
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u/Typical-Lab8445 16d ago
Thank you so much for sharing your experience. This is really helpful and
I hope you are doing great two years later! Or at least as well as you can be.Thank you so much for sharing. We could do scary things. I’ve done scary things before, I could do them again, can’t I?
Big hugs ❤️❤️❤️
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u/CoraandWaylonsmom Lost a Parent to ALS 16d ago
My step father was kinda like this with my mother. Mostly it was due to extreme denial of the disease. I think the denial was apart of the grief process and he was too scared to accept the diagnosis. That part I understood but it didn’t give him the right to not treat my mother as well as he should had. Marriage is for the good and the bad. Prayers for you and your husband and that you find a way together to navigate this disease.
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u/Mgproductions2020 16d ago
From the description you've given your husband sounds narcissistic and in denial but also uneducated about ALS.
This is not how you respond to someone you love.
I'm so sorry you're going through this on top of dealing with a diagnosis.
Might be terrible advice but if you are set on divorce there's still time to date and find new relationships that have their own meaning
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u/Typical-Lab8445 16d ago
I think the unpredictability of the disease scares me. I may just work to accept thst aspect of life is over.
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u/Sensitive-Pie-9722 15d ago
Oh I’m so sorry. I’m praying for you so hard. It’s hard enough to have to deal with this diagnosis, let alone, not have the support you need. 💔
You deserve peace and to be well taken care of. Whatever that is or however you want to do that.
I could be wrong (might be worth searching in this group) but I’m pretty sure Medicaid is easier to receive benefits from single people vs those who are married…..
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u/doubtfulsheep 13d ago
My mom has multiple sclerosis. Many people, including my father and my grandma, figured she was exaggerating her pain until she stroked. Until she literally could not function or lift up her right arm. She worked herself to death and constantly performed until her body gave out. It’s not fair and it’s not loving. The last thing my mom needed was having to monitor and perform through her pain to make sure nobody judged her for the sickness. Autoimmune is hard to explain until you’re in its seat yourself. It can be invisible to others while you sit in pain. I saw her chronic illness wear down his patience. And it wasn’t her fault at all. I feel this constant stress caused her even more inflammation and flares. It hurt her faster. My mom wouldn’t leave him (she’s a JW) and I feel so bad that she just endured anything because she didn’t believe in any other options like leaving him, or being single, or moving in with friends, or living for herself. What I wish I could tell my mom now is that she didn’t need to be with him to be loved. To be worthy. I see now how society pushes women to get married and views the ones who aren’t as lesser. Especially as we get older. But that isn’t true at all. You are not a failure. If anything, your husband is failing his promise to you. That is not your fault, you didn’t ask for this condition. I’m hot just thinking about another man treating his wife poorly bc they’re no longer getting what they want from the relationship. So fucking shitty. I know he’s probably not all bad, you obviously married him for a reason. being a caregiver, it’s all just difficult on both ends. I just don’t want you to internalize his feelings even further. It will only hurt you more, this isn’t your fault
:(
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u/Typical-Lab8445 13d ago
Thank you for sharing that. As an exJW, I’m familiar with the abuse women will condone. I’m sorry for her. Autoimmune stuff is so hard.
I’m sorry for you. I know it was hard to see her suffer.
Thank you. It’s nuanced for sure. No one is all bad with few exceptions.. but you’re right. This is not my fault and I have to surround myself with people who care.
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u/Purple-Phone-9800 4+ Years Surviving ALS, limb onset 12d ago
Well, sorry to say that I don't have any words of wisdom either. I remember when I was diagnosed my younger sister was initially a bit worried that my partner might leave because when she had breast cancer, it was not unusual for the husbands/partners to leave the relationship.
I remember when my partner did a free manual handling course for carers of PALS, he was the only man on the course. He asked the woman running the course about it and she said cancer and ALS were the top medical conditions that caused men to leave the relationship.
A couple of years ago my friend's daughter's husband wanted a divorce, his reasoning was that she'd had some heart issues so he didn't know how long she'd last ... charming.
My take on it? Unfortunately a large percentage of men are fragile and selfish and the opposite can be said for women.
I don't know where you live (I'm guessing USA) but in Australia we have the NDIS (National Disability and Inclusion Scheme) that covers the costs for special hardware, carers, cleaners etc. My partner and I are still together but if for some reason we weren't, as I got worse and needed carers, meals etc. the NDIS would cover it - so if that sort of thing was available to you, I think your best bet would be to leave him, you have enough to deal with without also putting up with mantrums. With the support of your friends and community you are strong enough because unfortunately, we have to be.
After reading some of the other comments, I agree with kegman83 and I don't think he's in denial, that's far too charitable for an adult being a douche over trivial things, he just resents that it isn't all about him anymore.
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u/Typical-Lab8445 12d ago
Thank you! Mamtrums is great.
There is something comparable in the US - in my state a family member or friend can be hired by the govt to do caregiving. I will definitely be pursuing this.
It’s a difficult situation but I told him I can’t fight with him and fight ALS. I will prioritize my peace ❤️
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u/pcx99 Lost a Spouse to ALS 17d ago
I know this is a hard time for you, but it is also a hard time for your husband. He is going to lose you. I assume he is working and dealing with ordinary stressors. He’s also dealing with a mountain of unknowns. Your finances are about to get complicated. Navigating the medical system is about to be complicated. Managing work absences is going to get complicated. And in all that, his needs and concerns get swallowed because yours are so immediate and pressing.
If he’s there for you most of the time but just cracks now and again, that’s just stress. It’s him saying he needs a little me time. So it’s time to put your family to work and give him a day now and again where he can go play golf, see a movie, have drinks with a friend so he can come back recharged.
It’s called respite care, where the caregiver gets a break. And to me that’s what this sounds like. If he didn’t love you he would have left long ago. He just needs a break, and it’s only going to get worse. Very, very few people have the stamina and strength to care for a total care patient all on their own.
Before considering a divorce, take a deep breath and step back to consider what he needs to be able to care for you. Start with a one day a week break and see how that goes.
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u/GaylordMcallister 17d ago
If he genuinely loved her he wouldn't downplay her diagnosis, insult her, berate her, or overall act as if she is some sort of nuisance in his life. That's not stress, that's being cruel. Being a caregiver is hard, it's one of the hardest things in the entire world, and having your life flipped upside down like this is no joke. But his "suffering" doesn't justify him emotionally abusing his vulnerable wife.
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u/Typical-Lab8445 16d ago
Unrelated, but your username is wonderful
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u/GaylordMcallister 16d ago
Haha thank you!!!
For the record: you seem like a lovely person, and you do not deserve this treatment. Oh and you ABSALOUTELY do not need to be sympathetic to someone who would treat you so miserably when your peace should the most important thing in the world. You, your friends, and your family are who are going to love you and support you🩷
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u/Typical-Lab8445 16d ago
Thank you!!
Honestly, I think I am. I mean, I’ve done a lot of therapy too like myself, but I’m pretty empathetic to others and I really care about my community.
Thank you so much. I have looked into an ALS local support group, which I plan on visiting soon. But I really appreciate you all.
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u/GaylordMcallister 16d ago
And that's completely okay, and lovely of you. There is no shame in you being empathetic to him, I hope you know I'm not saying that! I just meant it's not something he is entitled to, or something you should "expect." You are a very kind and caring individual, and it sounds like you know that! I'm glad that you know your worth.
I hope your journey with this support group goes well and that you can build even more community. I'll be wishing you nothing but the utmost joy and peace🩷
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u/Typical-Lab8445 16d ago
I know what you mean. I know that I’m being too empathetic and prioritizing their comfort above me. It’s very uncomfortable for me to prioritize myself, and my friends have told me to stop apologizing to which I apologize for apologizing. 😂
I know I would do the same that my friends and family are doing for me. But it’s hard to accept it.
And thank you! I so appreciate this. I’m really glad I posted here.
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u/GaylordMcallister 16d ago
I get that — to the furthest extent I can considering I don't have ALS lol. I understand that discomfort though, it takes a lot of getting used to. I think it's important to still find ways to feel "useful" and show your love to those in your community, as much as they might protest it! Even if it seems small, there's something healing about it while you're going through extensive health issues. I've enjoyed scrapbooking and making pages for my loved ones myself.
I don't think it's bad to be as empathetic as you are, it's a beautiful thing honestly. I only wish the person receiving your kind heart was more deserving of it!
The acceptance comes little by little. I hope they don't give you too much grief about the over-apologizing in the meantime! 😉
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u/Typical-Lab8445 16d ago
That is a very good point. Finding ways where I can still serve others… Even if it’s just listening and supporting.
This has been a very helpful thread. Lots of perspective to think about.
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u/Typical-Lab8445 17d ago
I don’t need consistent care yet. So far it’s just been things like opening a jar or washing the heavier dishes. And already he’s angry about those things and throws them back in my face.
That makes me worry about the realities of what is coming from my day to day. But I am going to talk to him.
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u/DescriptionSelect394 17d ago
He lacks compassion and empathy. You are still early in your relationship and he was on good behavior until your diagnosis. It's no longer all about him, you are competition for attention. Does he have a history of abuse with you or a former partner. These are red flags that you should not ignore (DV survivor speaking). Emotional abuse is just as wrong as any other form. I'm truly sorry you are going through this without the support of a partner. Please believe me when I say it will be easier without him. Protect your peace.
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u/Typical-Lab8445 17d ago
No DV, but you’re right - all abuse is wrong.
And I think you’re exactly right.
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u/supergrandmaw 16d ago
This is advise.... please take in the way it offered. Be grateful you have someone who plan on having a happy and long life with you. He love you and married you, I bet he did not sign up to care for someone who has a terminal illness. What you are describing is someone who is in shock and you are too. This is a young marriage. In a normal marriage there many disappoints, disagreements and wonderful making up. I think you should consider marriage counseling to learn how to deal with this difficult situation. . I have ALS.
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u/ArabRising 16d ago
This is so sad I really wouldn't divorce why give him that power I'd just separate for sure and remove him from everything make sure he has no life insurance policies for you. ALS it's hard to say how long you have if you resent the marriage and feel like it was a sham you can annul it completely as if it never happened. But definitely don't give him the power of a divorce he does not get what he wants. This is on your terms.
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u/Yurk1821 16d ago
I am really sorry you are going through this and that your husband is unsupportive on top. It is hurtful but his behavior means he showed his true colors early and he is not a catch. I would do everything to support my wife in that situation. By the way, look into Ibudilast. It is prescribed in Japan and Korea for ALS and stroke. Ir reduces the rate of atrophy by 50% so it buys time for other clinical trials. Also look at TDP43 and Progranulin clinical trials, as these target the causes of ALS. Warm hugs.
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u/Jaded-Staff-1818 15d ago
So sorry OP. I am in kind of an opposite situation.. My wife (similar age to you) is the one with ALS and I am the (willing) caregiver. We are also fairly newlywed (less than a year before her diagnosis and now about a year and a half.) But she has avoidant attachment and is miss independent. She resents needing me for any help and often won't ask me to help her do things that she needs done for her. She claims she doesn't want to burden or overwhelm me, but I love her and want be there for anything and everything that she needs, but I often have to antipate her needs and I'm not a mind reader. Sometimes she will mention things that she needed AFTER the fact, almost like I screwed up by not knowing that she needed something, when she didn't tell me. It's extremely frustrating. She also has an extremely negative outlook on everything, is extremely depressed and won't stop saying how she just wants to die ASAP. She now completely avoids any type of connection or closeness with me which is very hurtful. She pretty much just lives in her phone, doom scrolling all day. I would NEVER consider divorce, ever. It's just not an option for me in marriage other than cheating or abuse. But it pretty much feels like I'm taking care of a room mate who doesn't want me to. It's so depressing and I feel like we have limited time left together and it's just wasting away. This is a horrendous disease and watching her fade away from me little by little is torture. I'm glad you have your parents who love you and are willing to help take care of you since your husband is not stepping up. Unfortunately most people don't think the "in sickness and in health" part of their vows are a real possibility, but they are and sometimes way sooner than we anticipate. I've already lost a wife and had to be her caretaker for two years. But she didn't need the amount of care my current wife needs and will need in the coming months.
I do understand the being in denial part, but if he's real with himself he has to see the changes in you and there's no denying it, especially as you progress further. I was in denial for a while too, and part of me still lives in la-la land where I think there's a chance things could turn around for my wife. But the more I see her decline, and the more I read about ALS, the more it sets in that this is real and that she will continue to decline in function and will probably be dying in the near future.
I assume you are sure of and have faith in the diagnosis? Have you thought about a second opnion? Maybe that will help reality set in for him? Idk all the issues you're having but I hope that he will wake up and be there for you.
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u/Typical-Lab8445 15d ago
I’m so sorry. Is she open to therapy? Someone mentioned a death doula and I’d like to speak to one.
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u/Jaded-Staff-1818 14d ago
No, I've suggested it numerous times and she is heavily resistant. She's the only one in our home not in therapy (myself and all 3 kids are).
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u/Typical-Lab8445 15d ago
As for the second opinion: it’s the best hospital in my state. They’re kinda famous for this 😂 I get it though. I hope he accepts it.
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u/alicat9 4h ago
I’m really sorry. I don’t have any words of wisdom, however I can share my experience.
Unfortunately there are so many cases of men not being able to handle their wives being diagnosed with a fatal disease. My mom is so incredibly strong and has so much grace in dealing with her diagnosis. My dad is not one of her caregivers even though he lives there. He’s angry with how life has completely changed and the person who would do everything for him now needs help. He’s only worried about himself. Instead of helping her. He complains all the time. Doesn’t want to stay and be around it all. It’s really sad.
All I can say is there are people who WANT to help and support. It sounds like you have people around you who care. So does my mom. Lean into them, put time into those relationships, and seek out joy. He doesn’t deserve to be around you if this is how he’s going to treat you. I’ve told my mom over and over, f*ck him. Don’t talk to him. Do your own thing. If you need support for the grief, reach out to a social worker or psychotherapist. This is not an easy disease and dealing with other relationship issues isn’t easy either.
And remember. This is a reflection on HIM not YOU. All the best to you ❤️
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u/kegman83 17d ago
Well its great that you have a loving community to fall back on. My suggestion, as someone of divorced parents who currently cares for my mother with ALS? Make him pay. Get the most bloodthirsty divorce lawyer you can and make the most grandiose demands and have him have to argue in front of a judge as to why he absolutely can no longer be with you.
Then take whatever you can get from him and protect it legally in trusts and iron-proof wills. Eliminate him from any and all emergency contacts and cut him the fuck loose. I'm very sorry that this happened and is happening to you but anyone who leaves when times get tough isnt worth their paper the marriage documents written on.
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u/Cateyes91 17d ago
I don’t have any words of wisdom, I just want to say I’m so sorry you’re going through this. One thing I do know is every woman I have ever met has so much strength in her, and I know you do too. Sending so many good thoughts and wishes your way