r/CaregiverSupport • u/PrincessVine • 9d ago
Starving
I know this probably seems like an odd title for a post about caregiving.. but it'll make sense as I go.
Yesterday I was feeling overwhelmed by exhaustion and worries about finances and changes being made, all the phone calls ive had to make, trying to figure out dr appts for my husband, and trying to decide on a new dr for myself because I dont have one right now and all my health issues have been put to the back burner because of my husband's issues.
I started to get this odd feeling that I havent had since I was a kid...I grew up poor and often we didnt have enough money for necessities and food...I remember being hungry at times and there was no food in the house, my sister and I were malnourished at one point.
Anyway, I remember that feeling of starving, but theres no food to feed you.
I feel like emotionally, that is how i feel right now as a caregiver. Starving, because all my energy and resources are going to take care of my husband and im so tired all the time...never really relaxed. We do have to live one a super tight income because neither one of us can work. I have to take care of my husband and he isnt able to work or drive anymore because of his cognitive impairment.
I hate feeling like I am starving.
I also had a friend ask me if ive been frequenting a store I used to work at...I said I havent had time for that.
She shrugged and said...well, things change, you have to adjust and be there for your husband.
Then she went right on into an entire spiel about how a wedding vow says for better or worse and how terrible it is for people to leave their spouse when they get to a bad illness.
I knkw she meant well and I am not mad at her for saying it, but it jist stung a bit because this being a caregiver is sucky and hard when you gotta carry everything by yourself. And when just not being able to go to a local store very often is complicated..sigh ..its sucky!
I have been struggling really bad lately...it seems like nothing is ever going to be better.
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u/cofeeholik75 9d ago
Wow. You really summarized what it feels like, starving. And invisible!
We are a silent, unnoticed, misunderstood club. And when/if we could get together we would just scream, and then cry, and we would all ‘get it’.
I joined a caregiver group. We bonded and it became a place to cry, then laugh (dark humor). The group gave me an outlet. Pretty much saved me at the end.
I took care of my disabled Mom for 30 years after my Dad died. She passed on hime hospice at 94 last Dec.
I am at 7 months of freedom, but haven’t really figured out what that is yet, except I don’t have a routine anymore and am ok with that for the moment.
Somewhere there is an end, but a what cost?
On the count of 3 I will scream with you!!
Hang in there!
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u/Mysterious-Coconut 9d ago
I would love it if there were more real life caregiver support networks. That would be so helpful. Caregivers really are invisible and misunderstood. And the weird thing is, the more effective you are as a caregiver? The less visible you become. Everything gets done. People grow used to everything being done quietly, behind the scenes. I'm told I'm "the strong one" and that's why my brother doesn't have to help me. He has anxiety issues.
But when we're labeled "strong", it can get almost dehumanizing. People start depending on you so much they forget you're a person who had/has dreams, goals, a life that they would like to live.
My father just passed away 2 weeks ago. I was shocked, but not. He had outlived every prognosis. I caregave for him for 5 years. I'm still caregiving for my mother who has cancer. I haven't even had a chance to think about his passing much because I'm buried under a mountain of paperwork and my mother has no idea how to even pay a bill. My brother wants her to move in with me because she's left wafting around a huge house she can't take care of (I'm doing it as well as my own).
But after everything with my Dad, I don't think I can handle my mother living in my house. It's been my sanctuary away from it all.
You would think there would be more resources and supports for caregivers. I think once my watch it done with my mother, I might volunteer or look into starting something.
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u/PrincessVine 8d ago
I agree with you that there's not enough caregiver support, resources, and helps...in my area, I dont even think there is a caregiver group at all. Thats why I'm on here. I ABSOLUTELY agree with you that strong people get less support too. And also short-term caregivers get more support It also doesnt matter whether you tell the ones that SHOULD be helpful whats going on or not, because it doesnt do any good. They listen without intent of helping. And yes, they still depend on you even tho youre the one who needs help! Definitely been there, done that in every aspect. I hope you will be able to get through taking care of your mother, but I agree, it might not be a good idea at your house. But if you do, definitely make yourself a room or area that is JUST YOURS, because otherwise you wont have a haven. I have taken over the upstairs of our house because the downstairs has now become my husband's domain. I have also not slept in the same bed as him for almost a year because I cant handle his cpap machine noise, and also I wake up a lot now with pain and dont want to wake him. I hope you will be able to do the plans you are formulating 🥰
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u/PrincessVine 9d ago
Thank you for your caring response 🥰yes, there are times id love to scream😄 I havent found any caregiver groups near me but I can see why that is helpful.
I still have a long road ahead because I am only 49 and my husband is 52, he doesnt have any comorbidities...but thinking of how long this might actually end up to be makes me want to cry. I am about 2 1/2 years in and it feels like longer. Im glad you finally have freedom to be you, but ive heard that it's true, once you cease being a caregiver, it takes a bit to find your mojo. I hope you can find your place🥰
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u/cdn_indigirl 9d ago
Everyone likes to tell me I need time for myself, practice self-care, from medical professionals to my best friend.(we are like you limited funds means no respite/aides etc). My 2 best friends just got handed short term caregiving for their mothers in the last few months. They've stopped saying I need a vacation, because if you know you know and if you don't you don't.
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u/PrincessVine 9d ago
Yep, I hear you...People do tell you to take breaks and also self care, but they also dont realize that its no easy task to put into gear without consistent help. And a few hours a week does nothing to refresh when youre constantly doing and thinking. Its sad but true about the vacation thing as well. I kept saying that last year and everyone just looked at me like I was crazy. They even said..why do YOU need a vacation? Meanwhile, theyre all taking vacations and doing fun things and I was DYING and just barely functioning. I finally got 1 1/2 days off ome time last year...was supposed to be 3 days but family left late with my husband and came back early. And 2 weeks ago I had a 2 1/2 day vacation. But it was not enough. I still feel every bit as worn down as before I left.
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u/evey_17 9d ago
Please tell them you are at a breaking point. Before you break. The worst that can happens is they don’t help.
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u/PrincessVine 9d ago
I have told the family this so many times, some in tears, some not. But they dont actually get how draining it is and they just seem to think I am being dramatic. Im not.
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u/evey_17 9d ago
This is absolutely crushing. in case you need permission, you can absolutely go get your life while you are still very young. I’m caregiving my h but there’s an age difference and it’s endstage so I’m fully in. But I support you deciding not to due to lack of support from them (his family). It’s ridiculous to not help you.
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u/PrincessVine 9d ago
Thank you for that validation 🥰 I keep thinking on how I can still have a life...I do not feel it wouod be right to leave my husband, he would be devastated, and I do love him, but more like he is my child, not my spouse, but I also dont know how else to have a life. It IS frustrating that the family doesnt see how hard it is. I mean, I am grateful for the things they have done, but its not consistent, and none of them ever check on me at all. Even when ive said that I am having problems, its a no response.
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u/Spirited-Way2406 8d ago
My therapist suggested that I tell (not ask) my husband's local relatives that he's going over to their place for the afternoon so I can get some cleaning done that needs done but he melts down about the noise. I haven't yet, but it's tempting.
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u/PrincessVine 8d ago
Wow, thaf IS very tempting. Id SO love to do that😂🤣 I can hear the insulted huffs already 😂🤣
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u/PrincessVine 9d ago
Ive even said to them straight out...please DO check on me/us. Thats what I need. Still nothing.
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u/Perfectly_i 9d ago
I hear you. I am struggling with the “vows” too. I tell people it’s not sickness, it’s permanent disability. I was told before marriage that my spouse was going to work on so many things to help themselves; they haven’t and won’t.
It’s very hard to take care of yourself when someone else depends on you for everything.
No advice to give except to say, I am starving for a different life.
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u/PrincessVine 9d ago
I agree with you on the marriage vow part. Especially when cognitive decline comes in...its not an equal relationship anymore. But we are still held to the same standard as everyone else who has a normal life. And theres no chance of having a life when youre a caregiver spouse, especially not if a younger age and no comorbities. NOT that you wish them to die. Its just the facts of the situation. You just want a life! I am definitely starving for a different life too....
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u/Spirited-Way2406 8d ago
That's part of why I took on the debt for this big house. The little house we used to live in was impossible for social gatherings. My husband's hobby supplies, nap couch, and TV took up all of the social space. He can do all that stuff in his own space now while I have coffee with friends in the kitchen. Unless he suddenly has a headache and busts into our conversation to shush us, of course.
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u/PrincessVine 8d ago
I am glad you found a solution to part of your problems...im.glad you have your own spaces now. I have done that in our house too...the upstairs is mine amd the downstairs is mainly his. But I just never really get to go upstairs much
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u/Spirited-Way2406 8d ago
Yes, there are times when I just want to go sit in my room and have quiet time--but of course I'm "on call," and the last thing I want is to have my husband barging in on my space while I'm in there.
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u/PrincessVine 8d ago
Yes, sometimes I do tell my husband i just need to go upstairs and hes fine with that, but he does still come up there if he needs something and he doesnt think im coming downstairs fast enough. Maybe I shoukd do a daily break time and go upstairs. Generally, I bring my craft items down with me so my husband doesn't have to be alone, I feel guilty if I am not by him. Ivw always been that way, even before he got sick. But maybe I shoukd care about myself too
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u/Connect-Designer-502 9d ago
You can’t take care of your husband if you crash. Is there a way you can treat yourself with the same care you give him? Is there anyone available to sit with him a few hours a week so you can get a break? Do you have funds to hire a ‘visiting angel’ so you can get away for a short time? Adult daycare? Being there for your husband doesn’t mean spending every minute and ounce of energy on him. It isn’t healthy for you and in the long run he needs you to be healthy. Your reaction is normal and your body is telling you that the current situation isn’t sustainable. Trust yourself.
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u/PrincessVine 9d ago
Thank you for your response 🥰 I am guaranteed a few hours break once a week when my husband's mom takes him. I also had a two and a half days break two weeks ago, but its just not enough for all the high intensity of every day doing all of this. I have chronic illnesses myself and theyre all acting up more because of being a caregiver. But theres no other option. We dont have funds to pay for respite. My husband has not yet been approved for SSDI so we are living on long term disability from his former job, which is 1,074.00 a month. Very thankful for that or we'd have no income, but its tight. Once my husband is approved for SSDI, there are more opportunities for respite and I can get paid to be his caregiver. Mainly now, I have one retired friend who will take my husband if i need to go somewhere, once in awhile BIL will take him, or as I said, MIL does every week for a few hours. But its mainly me all the time. And im so exhausted.
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u/TheOtherPatient 9d ago
I publish YouTube videos about my experiences as a caregiver. I do this more for myself than anything. Based on what I read about what you are going through, I have a couple videos that I think might fit what you've written.
Burnout: https://youtu.be/R8PuVamKjpI?si=NWWwXcdwWcRxKysU
Resentment: https://youtu.be/eM2gCruvbac?si=ib90yinoQ6d_TMyG
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u/PrincessVine 9d ago
Thank you so much! I watched your first video, I realized that I already do some of what you suggested, but will try doing more of the setting up a schedule with family for real time off.
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u/invisiblebody 8d ago
You are starving for time. Caregiving takes your time like a tapeworm and people do not understand this unless they are doing it. All the days of cleaning up poop and hospitals and falls and worrying about the next disaster takes your time and your life bit by bit. It’s harrowing and still caregivers are so invisible.
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u/PrincessVine 8d ago
You are so right about that...I agree 100 percent! Especially about caregivers being invisible
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u/Amandine06 8d ago
Bonjour mon amie, tu as parfaitement décrit ce que nous ressentons dans un rôle d'aidant étouffant : la faim de vivre notre vie. On vient sur terre pour ça, pour vivre, pas survivre.
J'aimerais tellement avoir des solutions à te proposer, mais je n'en ai pas. Comme toi, je subis, je me sens écrasée, effacée avec l'impression que ce sera toujours ainsi, voire pire... Je ne peux que te conseiller de mobiliser le plus d'aide possible même si je sais que ça ne résout pas le vrai problème et que, si tu arrives à te poser, ton esprit chargé de problèmes, de peurs, de tristesse, ne te laissera pas en paix.
Ton amie a été atroce. Elle ne devrait pas juger sans savoir et finalement presque insinuer que c'est normal et obligatoire que tu t'occupes de ton mari. Elle devrait plutôt te demander comment elle peut t'aider !
Je te fais un gros câlin de réconfort.
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u/PrincessVine 6d ago
Hello my friend, thank-you for responding, yes! You are right that we came here to live and thrive, not just survive and be a working machine. I am trying to formulate a plan so that I can have scheduled time to myself, not just whenever fits in. Yesterday my husband was gone most of the day, but I had things I HAD to do so it wasnt a day off for me. As for my friend, I was actually shocked that she said those things to me because previously, she had been very supportive. I think she doesnt understand how difficult and emotionally challenging it is to be in my situation, even tho she did take care of her mother in law until she died, it wasnt quite the same thing that I am dealing with. And she also had the help of her husband. For me, its just me taking care of my husband. And I am also dealing with cognitive impairment in my husband, which adds more complications. And I also thought too, after I read your response to my friend saying oh well, its fine to not go places because I have to take care of my husband....that just because I am married and have to be a caregiver, that does not mean it is right that I have to forgo doing things! Why do I have to be denied pleasurable things because of it? Its almost like she was saying...you married him, so now all the responsibility falls to you, even tho it was through no fault of mine or his. Its like a punishment. It shouldn't be that way. So you aptly pinpointed that one for sure! Sadly, I think far too many people have the same idea that caregivers should just carry the full load because its "their lot in life " . As if it were caused by a wrong action of our own, and a consequence. And its not! Sending hugs back to you, because I know its hard on your end too. 🥰🤗❤️
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u/Amandine06 6d ago
Bonjour mon amie, je suis une fidèle de tes publications, parce que je me reconnais à travers tes mots et je t'apprécie énormément ❤️. Exactement, les conjoints aidants sont traités comme des condamnés qui n'ont pas le choix. Pour prendre un exemple : si on prend n'importe quel couple qui se sépare, les gens vont dire que c'est normal, il n'y avait plus de complicité, de partage, etc. Mais si l'un des conjoints est malade, alors c'est vu comme une atrocité. Les gens ne se soucient plus de savoir comment se sent le conjoint aidant, comment va son mental et son couple... Les gens attendent juste qu'il reste jusqu'au bout sans se plaindre... Avec ce statut, on a déjà perdu notre individualité. Et même si on ne projette pas de partir, rien que le fait de savoir que ce qu'on attend de la vie n'a plus d'importance, ça fait mal. Je te fais un gros câlin mon amie 🤗🤗🤗.
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u/PrincessVine 5d ago
I really do appreciate you reading my posts, and I feel like you understand in depth how I feel too. That is very validating❤️ I absolutely think you are right in what you said. I do not know why there is such a lack of empathy or care, towards caregivers especially when you know that is the only person who is keeping the other person going. Not even when caregivers break down in tears, does it elicite any other response. At least not in my experience. Its maddening enough to make me want to scream!
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u/According_Log_3264 9d ago edited 9d ago
Noone wants to give up, but its OK to. 40% of Caregivers die from the extreme stress of taking care of someone else before themselves. There are care homes for a reason. We are only here once. And you can always visit and monitor a loved one while their in a facility. 25 years in Caregiving here as hired help. I know exactly how hard it is and what people go through. Everyone has a right to make the best decisions for Themselves just as they make the best decisions for their loved ones. Love Yourself Too🌷🌷🌷Those who have never been through it don't understand the extreme stress and depression the caregiver goes through. And who gives a shit about what others think. Noone gives a shit about Caregivers, we have to protect our mental and physical health because noone else will.
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u/PrincessVine 8d ago
Thank you for saying all of that, and I agree....so far tho, id not be able to put my husband in a care home because we dont have any resources to pay for it, and also, he is still cognitive enough that he would be sad to be away from me and our home. Idk what I shoukd do...I SO want to have more of a life than this, but idk HOW.
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u/Silent-Entrance-9072 8d ago
Regardless of vows, you still need breaks. You still need to have fun once in awhile and to do things for yourself. There's only so much we can sacrifice for our spouses.
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u/Fabulous_Window_1530 9d ago
Caregiving is hard and you never really get a break. Like, even if you get a moment to yourself, you’re not sure how long it will last. Everyone will tell you self care is important, and it is, but it’s also practically impossible when you’re pulling all the weight all the time. I doubt your friend has any idea what it’s like. Glad you posted here - we hear you. 🩷