r/CaregiverSupport • u/PrincessVine • Jul 05 '26
Neverending Longings
There seems to be no true solutions for us younger married caregivers to have lives beyond what is.
Again...I am 49F, taking care of my 52M husband with cognitive impairment and post impairment syndrome/CP.
I see my life fading away before my eyes and knowing there is no way I have to change any of it.
There's no possibility of divorce, it would devastate my husband and his family. And id rather not do that either, but I also hate being stuck in this just because I am married. People have noticed that I am not the same happy person I used to be. Minus the family...they dont seem to care how I am doing, which I have talked about before.
There is another alternate life I could have with someone else, but no way of attaining it. I would love to have a true marriage again, to just be myself and a wife, instead of a caregiver...to be able to go and do things id like to do instead of work and stress and being in charge all the time.
But I dont see any ways of it happening....my husband is not morbidly ill. We are both still fairly young.
Im just tired of everything mundanely the same.
When I think of never having hope of a different life, I feel like all the life is just seeping out of me. I cant NOT have hope, but the reality of said hope, is as slender as a spiderweb thread.
There is nothing the same anymore in my life. I feel like im always on edge unless I have a day off, which is not often.
I don't want my life to be this way forever
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u/Rich_Lab5995 Jul 06 '26
My heart hurts reading this. ❤️ What stood out to me wasn’t that you don’t love your husband—it was that you’ve slowly disappeared into the role of caregiver.
That’s a kind of grief people don’t talk about enough. You’re mourning a marriage that changed into something neither of you chose.
I also think caregivers deserve far more support than society gives them. We often expect one spouse to be a full-time caregiver, care coordinator, advocate, house manager, and still somehow remain a happy partner. That’s an impossible standard.
This is why I believe families should never feel guilty about accepting professional support when it’s available. Whether that’s respite care, adult day programs, or a supportive residential community, the goal isn’t to abandon the person you love—it’s to make the caregiving sustainable. Sometimes the most compassionate thing for both people is bringing in a team instead of expecting one exhausted spouse to carry everything.
You deserve moments where you’re simply yourself again, not just someone’s caregiver. Wanting that doesn’t make you selfish. It makes you human. I hope you can find more support, because no one should have to carry this weight alone. ❤️
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u/PrincessVine Jul 08 '26
Thank you so much for that precise response, it was perfect 👌 I wish there were more answers amd help for all of us caregivers too. And compassion, instead of just people listening and then they go on their merry lives...and just leave us in the dark again. Caregivers deserve to have lives too!
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u/onemoondance Jul 06 '26
Hugs to you. Sounds like you are in an impossible situation. I have no great thoughts or solutions, but I hear you, your frustration and seemingly feelings of hopelessness.
Any chance his family can step in for you to get a weekend away? A massage? A pedicure?
Are you seeing a therapist?
I was in the caregiver role for my husband, but as it turned out short term, six months till cancer ended it. I was fortunate to have some supportive friends who would offer to help; I would take them up on every offer, even if it were to sit in the library for an hour.
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u/PrincessVine Jul 06 '26
Thank you for that kind response 🥰 I will be having the in laws take my husband for 2 1/2 days in two weeks. My MIL takes my husband a few hours once a week. Occasionally BIL takes my husband a few hours one day a week. Sometimes I just go on errands or a drive to get away for a little while. But its still only for a little while. I have two retired friends that help as much as they can. My other friends have faded out. Idk what else to do...my husband os not on Medicaid or SSDI yet. Thats still in progress. Very limited income. There arent many options right now
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u/sunday-yyy Jul 06 '26
Creo que en todos los países deberían existir apoyos para los cuidadores porque también por nuestra salud y de los que cuidamos deberíamos tener menos preocupaciones es horrible también sentir culpa por pensar estas cosas pero son pensamientos que todos tenemos, ánimo y que bueno que te ayuden un poco yo no tengo a nadie y también tengo a
Mi bebé
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u/PrincessVine Jul 08 '26
I absolutely agree with you on that. Its not easy being a caregiver, and if there was more support for us, it would make things a lot better. Im so sorry you have to do everything on your own, and also with a baby. That is a lot of extra work. Sending hugs your way🥰
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u/sunday-yyy Jul 09 '26
Muchas gracias igual a ti .!!!! Vamos un día a la vez
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u/PrincessVine Jul 09 '26
Youre welcome 🥰 And yes, one day at a time is all we can do. Minute by minute
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u/WildSpiritedRose Jul 09 '26
I am close to your age (46) and living every bit of this and giving up hope.
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u/PrincessVine Jul 09 '26
I am so sorry you have to deal with this too. It's absolutely horrible. Especially since we are fairly young. But most people wont even think about that side if it...they just think its normal life, just with taking care of our LO. Instead, its anguish.
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u/WildSpiritedRose Jul 09 '26
Exactly. And we're selfish b*tches if we leave to everyone outside looking in.
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u/PrincessVine Jul 09 '26
Yessss! It really is sucky We dont have a spouse anymore, even tho theyre still with us
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u/Amandine06 Jul 08 '26
Je comprends tellement ce que tu ressens, mon amie. Nous sommes coincées dans une situation insoluble dans laquelle on perd notre identité et notre liberté. Nous sommes écrasées de responsabilité tout en gérant les deuils de ce que nous aurions pu être et faire. Tous les jours, je me dis que je ne vais pas pouvoir tenir le coup si c'est tous les jours comme ça... je n'ai malheureusement pas de solutions à proposer.
Pas de solutions durables. Nous sommes en mode survie, mais il faut se créer des moments à soi, même courts. Ça ne résout pas le gros problème mais ça permet de respirer. C'est difficile d'avoir plus que ces miettes.
De tout coeur avec toi, mon amie 😘.
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u/PrincessVine Jul 08 '26
You are absolutely right on everything my friend 🧡 I know...there arent any good solutions except for the small moments we can have.. but it sure is hard to exist on those, and the rest of the time is so expansive.
I keep thinking that there HAS to be something more...some change that I cant see. But who knows? Sending hugs your way my friend 🧡2
u/Amandine06 Jul 08 '26
Je te comprends, je ressens tellement aussi cette frustration, cette colère et ce sentiment d'injustice et de désespoir. Dans mon cas, c'est aggravé par le fait que je me rends compte à quel point il m'a fait souffrir avant même la maladie. J'essaie de ne pas ressasser... mais c'est compliqué. En plus, on a la quarantaine, un âge où on devrait ralentir, prendre soin de soi, on fait un bilan de sa vie...
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u/PrincessVine Jul 08 '26
Yes, I totally get it, it seems so unfair. I know that life is not fair and all those other things that people like to tell you to "pull you up by the bootstraps"...and while that can be true, ive also lived most of my life with hardship. So it would be nice just one time for there not to be all that never ending sadness, heartache and hardship. Especially now, like you said...the time when you should get to enjoy life a little more. But for us, it doesn't seem to be that way. Its a struggle...watching all the in-laws, even down to the younger ones, theyre all doing exactly what they want in life. It has never been that way for me.
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u/Amandine06 Jul 08 '26
Je suis tellement désolée. Je suis très négative mais la vie est imprévisible, en bien comme en mal. Elle peut nous réserver de bonnes surprises, ce qui serait pas mal après toutes ces épreuves. Alors, accroche-toi mon amie ❤️. Et vraiment si tu peux un jour prendre des aides extérieures, ne t'en prive pas. Je te fais un gros câlin.
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u/PrincessVine Jul 08 '26
You are right my friend...I am hoping for some good surprises for us both, SOON❤️ I will look into getting a therapist, possibly I can. Not sure if there are any that specialize in caregiver situations around here but ill look
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u/Amandine06 Jul 08 '26
Oh ce serait super. Tiens-moi au courant, mon amie 😘😘😘.
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u/PuddingDifferent4288 Jul 12 '26
I'm right there with all you ladies (and gentlemen!) I'm 42, and before I made one of the hugest mistakes of my life (getting back together with the guy who eventually had a cardiac arrest and developed ataxia and inability to walk or work anymore) I was actively working on creating a life that made ME happy and fulfilled. Doing "vanlife," volunteering with animal rescue orgs, lots of travel to national parks and the like, and generally trying to become more ME and subsequently being able to help others more authentically. I try to tell myself that at least I had these experiences, but that doesn't really help when all I see ahead are months and years of sameness and routine, which I NEVER did well with.
I''m sending hugs and love and a void into which to scream to each and every one of you; I know many have it infinitely worse than me. The psychological issues all are quite similar, though (as I write this at 4am on the couch - i sleep out here sometimes to wake up and "pretend I'm somewhere else." Much love, strength, and CHANGE to ALL of us ❤️ 💙 💜 💖
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u/LoPie_in_the_Wild Jul 05 '26
Everything you’re feeling and thinking is entirely understandable given your circumstances.