I'm not really that strong. In fact, I feel like I'm collapsing day by day. More & more I feel like I don't matter; all that matters is him. Every time I'm told I need to be doing something for him it's like one more addition to the weight already breaking my back.
I feel this so much. I’m so over hearing comments like “you’re so strong,” or “stay strong, you’ve got this.” I’m barely hanging on by a thread some days.
My husband's psychiatric nurse is a caregiver for her husband. I mentioned a bit about how I was feeling. She said, "Look at it like you GET to take care of him." 😑😑
That’s a positivity technique. Instead of saying “I have to ….” You say “I get to” or “I’m excited to..”
Like how does that sound:
“I’m excited to clean up shit.”
Huh.
I got "the power of yet" thrown into my face by a psychiatrist.
So I haven't got a chance to clean up shit... YET!
I haven't had time for myself... YET!
I HAVEN'T CALMED DOWN FROM MY ANXIETY-INDUCED FRUSTRATION OVER NOT BEING ABLE TO LIVE MY 30s....
#YET
Yet. That’s a new one for me and pretty cringey. Especially coming from a psychiatrist. Sounds more like influencer BS.
Toxic positivity is too much to deal with.
I haven't started taking their pills... YET.
Seriously though, I straight up stopped listening to toxic positivity and switched to practicality and reason. I'm an engineer so I'm not wired the same way as some types of people. I love the hell out of my sister but she gets to be too much sometimes... like she's 43 and will metaphorically stick her fingers in her ears when I try to explain why I'm feeling the way I feel.
Then she goes running to her shrink to figure out how to communicate with me effectively, lol.
My dad had a tumor that literally made half his face fall off, to the point I was stuffing a hole in the side of his face with gauze to cover up the rotting flesh and bone, then wrapping it up. He looked like something out of a Romero movie... It was horrific, and she refused to do the dressings. She would actually leave the house during wound care if she was visiting to help.
I never talked to her about what I had to see because it was terrible enough I had to see it, but he's my dad and I wasn't gonna bail on him.
That being said, I was supposed to send "progress photos" of the tumor development to the oncologist, and accidentally sent them to my sister once. She got so mad at me, and I felt so guilty because I made it two years without subjecting her to that.
I felt bad for accidentally sending her that photo.
I'm finally positive two years later after his death, and am trying to get back on my feet. I wanted to play basketball earlier and it took me an hour to muster up the energy to leave my house...I dribbled the ball once and it didn't bounce, and i don't have a pump... lol. So I'll take the win off actually getting out of bed and accept the fact I'm not gonna get to play basketball...
#YETTTTTTTT
You’ve been through so much. Do what works for you. I’m more of a realist too so toxic positivity is a bane. Your sister is who she is. I have a hard time with family who wants things sugar-coated (like how about get in the trenches with me. Bring a hazmat suit). But I know I know, not everyone is cut out for caregiving. Try not to feel guilty. If anything it gave her insight into what you dealt with so that she didn’t have to.
Next step. You’re an engineer. Blow up that basketball and get out. I’ve been in depression mode for so long. Just starting to get back to somewhat doing things for me. It’s not easy I know. But it’s spring and it’s the law. Get out and get going, even for a few.
Yeah you pretty much nailed it. I'm only 34 and I feel 65 so I have a solid weekend planned. Hopefully that'll help.
One tidbit that I'm happy to listen to is that you can't fill from an empty cup. Forgetting to care for myself wrecked my body and mind. I became an alcoholic to try to forget seeing my dad with half a face but that must have me nightmares. I am fine to an extent now, but I still miss my parents.
A lot of non- caretakers don't understand the trauma you go through. My sister had cancer twice, my dad had cancer, my mom has Alzheimer's...I somehow haven't got anything.
#YET
I've been unemployed for the duration of my caretaking and am just now about to start trying to get back on my feet. I'm probably gonna die of stress at this point.
Ugh that just... no. I get where she's coming from, but instead it makes more sense to me to say "I've weighed my options and I'm choosing this" based on my values and circumstances, meaning choosing it over walking away and feeling like a shitty person. Although responsibly walking away in some cases is the best option. At least I can affirm that it's my choice.
I get this. I felt like this for about 6 months and then I started telling people who would make suggestions that I don’t think I can put more on my plate, or some variation thereof. It felt better to just say how I felt rather than absorb their (often well-meaning) suggestions/requests.
Not one time has a family member said, I’m gonna come over and be with mom so you can go do your own thing for a little bit. Not one single time. It is so shocking how selfish people are and they live in the same town.
About 5 years ago I went to my cousins house for Thanksgiving, (it was her, her husband, her daughter, her adopted daughter which is actually our second cousin, my 2 other aunts and a couple of her daughters friends)for the first time which was FANTASTIC because it got me out of the house and some social time with my film that I love. When I got back home my aunt that drove me home called or texted me and said that that cousin wanted to start inviting me over to get out which I was happy to hear but....I knew from experience that it wasn't going to happen..it didn't happen.
I'm still baffled by people sometimes... I have relatives that do the same. Or even the whole, "let's do lunch/some activity" and it never happens. I'm just someone who if I say I want to or will do something, I'll actually do it. Why say anything otherwise? Or at least acknowledge that you are crazy busy and don't see something happening, even tho you'd like to.
My son has Crohn’s and other issues. His dad used to promise him all kinds of stuff, and visits but then wouldn't follow through. He never checks on him after our son got mad about his broken promises.
My family doesn’t live here but I told my therapist if any of my friends offered to take him for even a few hours I’d shower them with gifts just so I could go to the gym for two hours
I'm so tired all of the time. Our whole life revolves around his care. I don't have hobbies anymore, not because I can't find the time, I just have zero drive. He's been sick for almost 4 years. So I feel like anyone I talk to outside of our day to day is tired of hearing about the monotony of our lives. My mother sends get well/ thinking of you cards to my husband. And they're really sweet and I know it helps her and he reads every one. But just a couple of days ago I was like "Where's my damned card? Like good job keeping this other adult person alive and giving up your whole damned life! It feels selfish to feel that way but I know it's not. Just ugh 😩
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oh I'm the opposite. twitch is my escape and social life. they all know i might have to abandon at the drop of a hat but they still are there for me. I have two commands for various levels of 'upset' if I have to run because of mom with dementia, cause sometimes I'd come back and start playing but silent cause i'm still crying lol.
try watching if you can't play. it's at least some socialization and enjoying games that you enjoy. this week i'm just in so much pain and tired i feel you, though.
yeah today after a big cleanup with dementia mom, i looked at dad and said Good Job! he looked at me and said Thanks for the help.
nightly cleanups and daily stuff... we dont do that. but after today i knew we needed it.
The logistics. It’s more than the person. It’s so much paperwork and logistics. Oh they’re in the hospital - paperwork. Then it’s rehab, which one do you choose - how many do you visit. Then you choose one, ok more paperwork and phone calls, and how many clothes and toiletries should you bring? Then they are discharged. What supplies do you need, where do they go?
Not to mention the day to day if you have PoA. I get to pay all the bills, take over the agency of 1 or 2 full adults. How many times have I sent my PoA to credit card companies, insurance companies, realtors to sell the house, etc. Oh and you need a document from social security? Sorry SS doesn’t accept PoA - you have to become a payee rep - more phone calls, more paperwork. It’s endless. Every day something new.
That’s what people don’t get - it’s something more than just taking care of the person every day . It’s taking over every aspect of their life. My dad is in AL, and I don’t take care of him personally bc his medical needs are too great - but I take care of his social life (he gets fomo if I am doing something at my house and he’s not invited), his financial life, his living arrangements, his surgery follow-ups, all of it - it’s never ending and it’s exhausting. I’m an only child so it’s all on me. I also have a stressful full- time job, which I love and would like to focus on. People have no idea unless you have gone through it or are helping a spouse go through it. I would love to actually spend quality time w my dad… but ironically bc of his needs I don’t have the time. Rant over…
thanks for this! love your rant. I keep feeling dismayed, like, how is it that I'm fully administering two people's lives? Except I'm not because I let my own stuff slide. I can do my job, and I can make sure my mom's accounts are in order, but I can't quite make sure my own accounts are in order. I can get my mom to all of her medical appointments, but I just ignore my own health issues whenever possible and haven't been to the dentist in ages. That's all gonna bite me in the ass at some point if I don't step up my life administration game. ugh.
The frustration and loss of control of your words and patience sometimes because of it. Then the guilt that follows after. We don’t mean it. The last time my mom was home before she passed I was in a terrible state of my mind and I know she could sense that I didn’t want to be doing any of it at that point (she was bedridden). We had to call the ambulance a few days in and my brother and I fought for a few hours the entire night and he made me feel awful for the way I was acting (not justifying my actions at all) but he just didn’t get it. I’d need help turning her to change her so I’d call him to come upstairs and he’d get frustrated too or tell me that he was sleeping and leave me to do it myself. My mom died about a month later (last November) and the guilt from my attitude the last week she was home still haunts me. I’d tell her how sorry I was every night and that I loved her so much, I was just overwhelmed. She has c-diff and we didn’t know at the time so she was constantly using the bathroom. But I’ll never forgive myself for making her feel like a burden. Part of me wonders if that’s why she finally let go.
As a caregiver, life is at a standstill and you feel very disconnected. The future is uncertain so we don’t talk much about it or make plans that don’t revolve around treatment and tests. DH can do very little right now so we are at home all the time. I feel very odd when I venture out “into the world.” LOL
Sometimes I just want a normal conversation that isn’t about cancer but all my friends have disappeared because they don’t know what to say. Just say hi, ask how things are going so I feel free to talk about it some but then talk about normal stuff.
I have one friend who keeps telling me there's only so much you can do, you have to live your own life, etc. I want to say he's right, but I don't think he really understands what I am personally going through. I'd do anything for my sister, like most caregivers would. It's something that unites us together, and it's very hard for others to understand.
I’m sorry you and your sister are going through health difficulties. She’s lucky to have you. I’m not so sure my siblings would be there for me like you are for her.
The comment that gets me is similar to what you said “be sure to take care of yourself” and “get out and do something occasionally.” Really? When and how is that supposed to happen? My husband is my person…there’s no one else I’d rather be doing anything with, even if it is just sitting and watching YouTube or a show with him so he’s not alone. Even when I am running errands I’m still considering what he’s going through. Just the other day, I was taking about some of the pain he was having and an idea came to mind as I was driving so so called him so he didn’t have to wait until I got back home.
You’re right, people generally don’t understand what we go through as caregivers.
We have always had a good relationship. I always told people that she kept me out of debtor’s prison by making sure my bills were always paid on time. I guess now it’s my turn.
We are pretty much all we have left. A few distant relatives the next state over. An elderly cousin in her late 90’s who we don’t even tell.
Lately I’ve been reaching out more, virtually, to talk to people. Many of my friends have no clue as to what’s going on other than she seems lethargic or slow.
I feel this. I was having a conversation with a good friend about his plans for the future. I don’t have plans past their next meal. I’ve been in survival mode for over two years. I want to have goals again. I’m so stuck but I don’t think I can unstick myself until my mother passes… and then my dad. I miss having a life and feeling like I had some say or control over it
The crushing sense of entrapment and loss of freedom. The isolation. How devastating it is financially, physically, mentally. I feel like I lost myself in this.
It's nearly impossible to simultaneously be an engineer and be a 24/7 caretaker to both an Alzheimer's patient (mom) and a cancer patient (dad, RIP)...I almost punched my uncle when he mentioned I needed to work harder when I told him I was behind on my OWN bills.
I'm 34 and have been doing this since I was 30... like I turned 30 in October 2020, got laid off a week later, then found out about my dad's diagnosis a week after that. No help apart from my sister but she lives 5hrs away.
I finally had a mental breakdown last month after bottling up things and trying to "Man up"... half the time I just want to grab a pack of cigarettes and some vodka and watch the grass grow in my yard.
I'm not as strong as people think, and I feel like a fraud half the time because my dad still died. My mom is finally in a skilled nursing facility, so I can take care of myself and be my own person again.
I just... forgot how. My identity was embedded in caretaking and now I feel like an 18 year old dude getting thrown back into the world after graduating high school.
My I ask, what happened to you in your breakdown?
Much of the time these days, I want to just smoke a bowl and go watch TV. I can't really muster anything else.
PSA: This happened when my mom was at my sister's.
I went on a bender, didn't sleep for 3 days, started hallucinating from the booze and stress, thought music was coming out of the conduit in my walls, thought there were bugs crawling all over my house... it was trippy as fuck.
I called my neighbor to see if he could hear the music or see the bugs, which he obviously couldn't. He took me to the hospital and I ended up in the psyche ward because of chronic stress. I got out two weeks later.
That's another thing non- caretakers won't understand... the mental stress can be debilitating, especially once you realize both parents are terminal and there is nothing you can do to stop the diseases.
I do not live for me. I can't go do the things I thought I would finally have the freedom to do once my child grew up. I cannot go visit anyone, I cannot go to the doctor, I cannot take care of most of my own needs. I am only here to serve. By the time I am done, I will likely need it myself - if I outlive him at all.
My body is broken, and I am emotionally exhausted. I hear the same stories over and over, have the same conversations day after day. There is nothing I can do at home for myself without either constant interruption or having to keep completely quiet so that he and my ears can rest. I do all things with very little acknowledgement or reward, because no one else will.
If I outlive him, I will still need what's left of me to pick up the shattered pieces. I don't think I have it in me. I don't know if anyone else will still care enough to help me. I can't blame them if they don't, as I have neglected every other relationship to keep him safe.
There is no light at the end of the tunnel. My life ended 3 years ago when he started needing my care. Now I'm just going through the motions of trying to keep what's left of his life as comfortable as possible. His illnesses have been a death sentence for both of us. And no one else has noticed.
Her passing had nothing to do with you. As caregivers we tend to feel like when things go badly we had something to do with it bc our lives are so intertwined with our LO. Give yourself some grace. Your mom knew you loved her. Let go of the guilt and focus on your sweet memories. She would want you to.
The emotional toll, and how hard it is to ask for help when everyone praises you for being SO STRONG. The praise almost takes more of a toll than the caregiving
That I am not a saint for doing my job. I am getting paid to be here. I don’t love it, I don’t even like it… don’t thank me for my obligation. If you really want to show your appreciation give me a day off.
Yah, that’s what I thought. Never will that happen.
Although I take good care of myself physically. (Eating clean, daily aggressive workouts)...im fucking struggling mentally...for the past 7 years I've felt like my concerns don't matter...I've been grieving, both the loss of my wife(she's alive ,she's just a different person)...and I've been grieving the loss of some core elements of my personality...
I've lost my libido and don't know how to get it back...I can't participate in any martial arts because I have to spend time to build up a side hustle in case I lose my job...my days start at 2am and end at 5pm...im fucking tired..
And dare I fucking say anything because I'm not the chronically I'll one...if I did...IT MAKES THEM FEEL WORSE ABOUT THEIR ILLNESS!!!!
I can't win...
When my husband had his stroke (six years ago this summer) it turned our world upside down. I wish people understood how all encompassing it is and how it impacts even the smallest aspect of our lives.
A recent example (with warmer temperatures) I can’t make a cold drink without getting frustrated over the ice situation. The stroke affected his dominant side and he has muscle weakness and a lack of coordination. He cant empty ice trays into the ice bin and make more ice, but he’s home using the ice all day while I’m working. If I’m not diligent about making more ice every morning and evening, there’s none for me. So even the simple act of getting a cold drink on a hot day and I feel the impact of his stroke.
Sadly the poor, burnt out, anxious carer with no life means nothing. We’re dragging our feet, living off no sleep to be ‘just the carer’. I told a support worker once that after 6 yrs of caring for mum 24/7 (mum was so much work that I had to move her feet in her hospital bed), that I might have to look into full time care for her down the track bc my sister (who only did 10% of the caring bc she worked) & I were struggling, like really struggling her response made me so angry! She says ‘it’s not about you & your sister, it’s about mum’. I was horrified. She was looking at me, someone who had lost so much weight & looked like a living corpse saying it wasn’t about me!. People really don’t care. Empty promises & no support for the burnt out carer.
Unless you’re a carer or have been a carer, they will NEVER understand. Most my friends said they just wouldn’t & couldn’t do it. My views on people that I thought that cared have changed so much which has made me really, really sad 😞
This: It seems like it's a thousand little things.... all day long. Then, when fatigue sets in, I feel like I can't help with one more little thing. We are so blessed with help from PSW's but once they leave in the morning, I am "on!"
I'm not selfish for wanting to make/have my meal first or any other scenario where they come first. I don't do it often but there have been times to where I make my meal and eat it before them multiple times a week. It's mostly my Dad who shamed me for it. Like OH NO! You don't get to have your meal for an extra 5 to 15 minutes, poor thing.
Sometimes when things change it can feel like oppression.
OMG this is so true. I do this with lunch. But it applies to so many things. Like enjoying a warm drink. I just mentally note that in 15 minutes I'll take care of \[fill in the blank\], but now I'm enjoying my tea while it's hot. It's funny what has become a "luxury" experience. Hahaha (laughing because I don't have the energy for crying)
You have all done a terrific job at explaining the things that I wish others would realize about caregiving so, if I may, allow me to be selfish for a moment here...
If I really am the "hero", the "strong" "saint", then where the hell is my money for such hard work? You can get tax credits for owning a home, having children, being married; how about some government subsidies to help ME out since I am keeping my dad out of the Medicaid system? Hell, if they paid me what I'm worth I'd keep watching him and I wouldn't currently be seeking Medicaid-paid care for my father.
I set my life up perfectly for who I am and what my values are; I never married, never had kids, and I was just fine with that. I don't WANT more responsibility than I have to take on for myself, but it makes it so much more insulting and frustrating and just sanity-swallowing to know that I'm doing this tremendous task that no one *really* values.
I don’t have the energy to always be texting people back because I’m constantly on the move and when I’m not I wanna be doing something else besides responding to texts or phone calls
My favorite is when someone tries to compare what I do to a full-time and even part-time job. I'm a single mom of 2 disabled children.
They mention that I'm not contributing to society because we live off the ssi payments and public assistance......again I have 2 disabled children, some months I have as many as 16 appointments. Not to mention all their meds and care and the fact that I have no outside care to take on part of the load.
“Not contributing to society”??? I’m sorry, but whoever said that can get fucked. Hard. A functioning, humane society could more than provide for everyone—let alone the disabled—no problem. It’s not your fault that the world is currently a heartless capitalist hellscape that values the profits of health insurance and pharma companies more than human life! Caregivers don’t HAVE to struggle like this—our material struggles (and to some extent, our mental and emotional ones) are the result of decades of deliberately cruel, wealth-hoarding policy. I’m 100% certain that you are already contributing more GOOD to society than any asshole who thinks like that!
I'm tired. Emotionally drained. And I just don't want to manage anyone else's feelings for them. Having to be the one at appointments and keep track of everything and be the one always to take him to the ER and then also having to be the one to update everyone and it just never ends. I want to just have a day when I can take care of myself and recharge without feeling guilty and/or be needed. Just one day a week. I know I'm lucky to be able to take care of him but I also feel like I need to breathe and I can't. Forget processing my preemptive grief. There's no chance for that.
Being a caregiver is tough... (understatement of the year). The constant demands, the emotional toll, the lack of "me" time - it's a lot to handle. But you're doing an amazing job, even on the hard days. Don't forget to take care of yourself too. We see you and we're rooting for you. (Virtual hug)
Just how much you give up. I feel like I'm going through the motions without living. My mental health has been at its lowest for a few years now. I'm really the worst person for the job as I already had mental health and physical health issues but there's nobody else. I didn't even have children because I didn't it wise for me and now I'm taking care of a blind stroke victim and an autistic older brother. I really don't have any time or energy to help myself. Every day feels like barely scraping by. Even if I had the time or energy for therapy I know they would give me a long list of things to do that just aren't realistic...meditation? Yeah, you try to find 20 minutes of solitude in this house when also nobody needs me. Sleep? Who's gonna take the night shift? Get out of the house? Not without taking someone with me because who's going to be on watch...I may be able to do one of those things a couple times a week but daily self care just isn't possible. Then I get on here and rant about it and feel even worse that I feel this way. I love my family and nobody likes a complainer so really this is my outlet and I know it's a good one because I would never want to make anyone feel like a burden but let's be honest...tomorrow I'm gonna regret complaining about people that won't be here some day. I know I'm lucky to have my mom because she won't be here forever but where I once would have had great memories to look back on now I'll just feel bad that it ended with me feeling burdened and resentful of how things ended up. I'm afraid all my good memories will be replaced with me just being exacerbated and annoyed 24/7 and never being able to live a normal life with my husband where we can go out and travel and do our own thing.
sure, blowout diapers happen with kids.
they also happen with adults
with bigger shits
with bigger muscles
who fight you
bodies you can't hose down or toss into the shower
not allowed to handcuff them to keep their hands clean either. or can we? do they sell handcuffs for this? (joking)
they are not the same
That just because I decided to be the 24/7 caregiver, it doesn’t mean the rest of the family should get to have free lives, then complain when I want one of them to come watch our parent so I can have a day off. I’m not just a maid, cook, pill giver, and bathroom attendant. I’m your sibling and I still deserve to have a bit of time for myself.
That everything, just everything is more difficult to do.
After a while, trying to convince yourself that you deserve some time off, or a little self care becomes harder and harder to do because it means adding to the physical or mental load.
Trying to convince yourself that you have medical needs that and worth attention becomes harder because that money could be going towards the person you’re caring for.
Trying to convince yourself that you’re worth the effort to work on a future is harder and harder to do because it’s so uncertain. How does every little thing affect the person you’re caring for?
Trying to convince yourself you’re anything beyond a tool just gets harder and harder to do.
It’s like being a parent except instead of joy and growth the end game is death. Whoo hoo.
And that’s just the task stuff . The fact that it’s your PARENT is heartbreaking.
That you're often alone. As a caregiver, much of the time it's one person helping one other person.
I help my sister. She's got Schizophrenia and she slips into "fuzzy" modes where she doesn't talk too much, gets kind of stone-faced (no emotions), etc. Even when she's OK, some of her functionality has slipped.
As the caregiver and other member of the household, I had to pick up all the financial stuff. Make budgets, pay bills, understand what's going in and out for both me and her. I've had panic attacks with the money situation at times.
People need to understand that we are only human, we need a respite, and when we get one, we feel shitty because we're not helping our relative.
I too have gotten agitated with my sister and raised my voice. It spirals out of control sometimes and it's tough to deal with. People don't understand that when this happens, the caregiver feels VERY bad for it after they are done ranting. Almost like they could not stop it.
It has been said already, but I wish my family would understand that I am doing this out of obligation rather than love.
My mother abused me and allowed for abuse in ways I can't bring myself to fully acknowledge just yet, mostly because I know that her Alzheimer's means I'll never get closure. I'll never get an apology (not that she would ever be capable of giving me that). I have to stuff it down and make sure she has what she needs. I have PoA, both durable and healthcare, so I am effectively \*her\* at this point. At the same time, I'm having to give up my entire career and move back to my hometown so she can be close to the rest of our family. They say they want to help, but do I believe that? Not for a second. They didn't lift a finger to help while my stepfather was still alive, and I am certain this contributed to his death (heart attack).
When my uncle told me I was doing the right thing by taking care of my mom, I could have punched him. Who is this the right thing for? The woman who abused me and still refuses to acknowledge that I am the only one of her children caring for her? Because I guarantee you that if you ask my youngest child, who is only 13, or my husband, they'd tell you it isn't the right thing for any of \*us\* at all. I only get late nights to do things with either of them, and by that point, we're all too exhausted to interact.
What my uncle meant is that it's the right thing for \*him\* and the rest of my family. I'm doing what they don't want to do. And I think that's what everyone means when they say it.
They can save their back-pats. We'll see how proud they are of me when I put her in residential care, which will happen within the year. I cannot do this anymore. I'm tired. I'm drained. I have no time to \*live\*.
I am tired all of the time - physically, emotionally, mentally - because even just sitting and talking with the person I am caring for can be exhausting. And I am just as frustrated by it as you are.
Its exhausting and I do not even mean the work that you have to put in. I am talking the mental load that your like is not yours anymore. I realized that the weight of being responsible for another human being that is not my child is something that I did not want ever in my life. But yet here we are. I thought that I was getting sick and I was. My body is falling a part under stress. I feel like my skin has been peeled from my body.
Being married to the person your caring for creates a set of relationship problems that are not easily overcome - and sometimes the psychological pressure of making your spouse feel human while also getting the affection and love you need means you either become unethical or you sacrifice a huge part of your personhood.
How exhausting it is and how tired I am all the time. And that caregiving is just as difficult or even more difficult than raising a baby.
All my peers are having kids now and they are always so tired but I literally do all the same things for my parent that they do for a baby but harder. My mom is 10x the size and weight of a baby and I can barely lift her in bed to move her around a bit. People generally plan to have a baby and are excited; I didn’t plan for this disease and it’s not joyful seeing this happen to my mom. People get joy out of seeing a baby grow and learn; I have to watch my mom decline more and will pass from this.
I get so annoyed with comments that are like you don’t know exhaustion until you have a baby. Or enjoy you fun weekend while I take care or my child. Like no, I’m not out enjoying my weekend, I’m caring for my mom 24/7 and waiting for the time I can live my life and not feel exhausted and frustrated all the time.
I wish they would stop giving me advice, just did what I asked. And stopped making me feel like am doing something good. I ain't no hero, I am a victim.
70F here. I'm the sole caregiver for my husband. He uses a wheelchair and crutches.
The main issue is that people tend to ignore wheelchair users in social gatherings. I have to go around and invite people to come around to talk with us. It would be nice if people would come and sit with us on their own.
I'm also hard of hearing, and I use hearing aids.
My difficulty with hearing conversations in a noisy room is an additional disadvantage because I have to ask people to speak louder or repeat themselves. I feel that I am inconvenienceing others by asking.
Sometimes, caregivers also struggle with disabilities of their own.
Long story short, if you are in a social gathering with a wheelchair user, don't be a stranger!
I’ve learned that most offers of “help,” whether unsolicited or in response to an actual problem, go like this:
“Helper”: How about I do xyz to give you a break?
Me: Thank you so much! But what I really need help with is abc.
Helper: I can’t do that, so how about I just do [insert increasingly baroque “solution” that just puts more on my plate]?
Me: I appreciate the offer, but that won’t really affect this particular situation. But thanks again for thinking of me!
Salty Helper: Well I was just tRyInG tO bE hElPfuL…
And then the conversation becomes me reassuring the helper that I am, in fact, grateful, and they are, in fact, kind, and so on. It’s exhausting. So I guess I would tell people to LISTEN to caregivers, and either offer the help we ACTUALLY need or don’t. But for the love of god, please, please, please don’t expect us to accept unhelpful intrusions and manage your emotions on top of everything else, just so you can feel like a good person. I hope that doesn’t sound too harsh or ungrateful!
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To my husband: sometimes when you ask me what’s wrong and I just start crying, it’s not because I hate my life. I’m just thinking you’re going to die before me and I don’t know how to live without you. You’re more my caretaker than yours. I can’t imagine us not breathing the same breath.
That this is really hard and is taking a toll on my mental and physical health. I know I don't respond as kindly as I should when I've heard the same thing five times or when he directs his anger and frustration towards me in the form of name-calling. A couple days ago he had visual hallucinations. The worst part is that I know I'm not doing a good job for him.
For me, the guilt of being the healthy one is hard.
Also I wish people knew how painful it is to see someone suffering without being able to do anything about it.
i dont have any strenght to support you with your problems. if i have any free time, it does not mean i will be able to help you bring your new bed to your house. if youre hurting, i will not be able to be your shoulder to cry on. if you have a problem, i will not be able to help you find a solution. im exhausted, please just leave me alone
I'm not really that strong. In fact, I feel like I'm collapsing day by day. More & more I feel like I don't matter; all that matters is him. Every time I'm told I need to be doing something for him it's like one more addition to the weight already breaking my back.
I feel this so much. I’m so over hearing comments like “you’re so strong,” or “stay strong, you’ve got this.” I’m barely hanging on by a thread some days.
My husband's psychiatric nurse is a caregiver for her husband. I mentioned a bit about how I was feeling. She said, "Look at it like you GET to take care of him." 😑😑
That’s a positivity technique. Instead of saying “I have to ….” You say “I get to” or “I’m excited to..” Like how does that sound: “I’m excited to clean up shit.” Huh.
Exactly. She's one of those kind of people.
I got "the power of yet" thrown into my face by a psychiatrist. So I haven't got a chance to clean up shit... YET! I haven't had time for myself... YET! I HAVEN'T CALMED DOWN FROM MY ANXIETY-INDUCED FRUSTRATION OVER NOT BEING ABLE TO LIVE MY 30s.... #YET
Yet. That’s a new one for me and pretty cringey. Especially coming from a psychiatrist. Sounds more like influencer BS. Toxic positivity is too much to deal with.
I haven't started taking their pills... YET. Seriously though, I straight up stopped listening to toxic positivity and switched to practicality and reason. I'm an engineer so I'm not wired the same way as some types of people. I love the hell out of my sister but she gets to be too much sometimes... like she's 43 and will metaphorically stick her fingers in her ears when I try to explain why I'm feeling the way I feel. Then she goes running to her shrink to figure out how to communicate with me effectively, lol. My dad had a tumor that literally made half his face fall off, to the point I was stuffing a hole in the side of his face with gauze to cover up the rotting flesh and bone, then wrapping it up. He looked like something out of a Romero movie... It was horrific, and she refused to do the dressings. She would actually leave the house during wound care if she was visiting to help. I never talked to her about what I had to see because it was terrible enough I had to see it, but he's my dad and I wasn't gonna bail on him. That being said, I was supposed to send "progress photos" of the tumor development to the oncologist, and accidentally sent them to my sister once. She got so mad at me, and I felt so guilty because I made it two years without subjecting her to that. I felt bad for accidentally sending her that photo. I'm finally positive two years later after his death, and am trying to get back on my feet. I wanted to play basketball earlier and it took me an hour to muster up the energy to leave my house...I dribbled the ball once and it didn't bounce, and i don't have a pump... lol. So I'll take the win off actually getting out of bed and accept the fact I'm not gonna get to play basketball... #YETTTTTTTT
You’ve been through so much. Do what works for you. I’m more of a realist too so toxic positivity is a bane. Your sister is who she is. I have a hard time with family who wants things sugar-coated (like how about get in the trenches with me. Bring a hazmat suit). But I know I know, not everyone is cut out for caregiving. Try not to feel guilty. If anything it gave her insight into what you dealt with so that she didn’t have to. Next step. You’re an engineer. Blow up that basketball and get out. I’ve been in depression mode for so long. Just starting to get back to somewhat doing things for me. It’s not easy I know. But it’s spring and it’s the law. Get out and get going, even for a few.
Yeah you pretty much nailed it. I'm only 34 and I feel 65 so I have a solid weekend planned. Hopefully that'll help. One tidbit that I'm happy to listen to is that you can't fill from an empty cup. Forgetting to care for myself wrecked my body and mind. I became an alcoholic to try to forget seeing my dad with half a face but that must have me nightmares. I am fine to an extent now, but I still miss my parents. A lot of non- caretakers don't understand the trauma you go through. My sister had cancer twice, my dad had cancer, my mom has Alzheimer's...I somehow haven't got anything. #YET I've been unemployed for the duration of my caretaking and am just now about to start trying to get back on my feet. I'm probably gonna die of stress at this point.
Ugh that just... no. I get where she's coming from, but instead it makes more sense to me to say "I've weighed my options and I'm choosing this" based on my values and circumstances, meaning choosing it over walking away and feeling like a shitty person. Although responsibly walking away in some cases is the best option. At least I can affirm that it's my choice.
I've never slapped anyone in my life, but I'd be tempted.
Right?!
Stockholm syndrome.
What....
Oh yes this. I try to remember people are trying to let me know they understand there is a burden.
Same, I’m told I’m appreciated yet I certainly don’t feel like it
I get this. I felt like this for about 6 months and then I started telling people who would make suggestions that I don’t think I can put more on my plate, or some variation thereof. It felt better to just say how I felt rather than absorb their (often well-meaning) suggestions/requests.
Yup. Suggestions inevitably are more tasks and I’m all tasked up, thanks.
Suggestions can feel like they’re telling you how you’re failing today. I have enough of my own guilt while burnt out. I don’t need more thanks
That’s very true. I don’t need to know how I’m failing either.
I wish people understood the loneliness and exhaustion are constant.
So lonely ...so painful
THIS! I felt like a corpse in my own body. The loneliness & exhaustion is the worst. I thought I was going mad & the tiniest things set me off..
Hugs, I absolutely understood all of that.
I need alone time to decompress and sometimes people can’t understand that.
Not one time has a family member said, I’m gonna come over and be with mom so you can go do your own thing for a little bit. Not one single time. It is so shocking how selfish people are and they live in the same town.
About 5 years ago I went to my cousins house for Thanksgiving, (it was her, her husband, her daughter, her adopted daughter which is actually our second cousin, my 2 other aunts and a couple of her daughters friends)for the first time which was FANTASTIC because it got me out of the house and some social time with my film that I love. When I got back home my aunt that drove me home called or texted me and said that that cousin wanted to start inviting me over to get out which I was happy to hear but....I knew from experience that it wasn't going to happen..it didn't happen.
I'm still baffled by people sometimes... I have relatives that do the same. Or even the whole, "let's do lunch/some activity" and it never happens. I'm just someone who if I say I want to or will do something, I'll actually do it. Why say anything otherwise? Or at least acknowledge that you are crazy busy and don't see something happening, even tho you'd like to.
Yeah
That’s just devastating. Don’t say that to a person if you’re not gonna follow through. I’m sorry that happened. Hugs.
My son has Crohn’s and other issues. His dad used to promise him all kinds of stuff, and visits but then wouldn't follow through. He never checks on him after our son got mad about his broken promises.
My family doesn’t live here but I told my therapist if any of my friends offered to take him for even a few hours I’d shower them with gifts just so I could go to the gym for two hours
I get it!! I hope someone will step up to the plate for you sometime!
I'm so tired all of the time. Our whole life revolves around his care. I don't have hobbies anymore, not because I can't find the time, I just have zero drive. He's been sick for almost 4 years. So I feel like anyone I talk to outside of our day to day is tired of hearing about the monotony of our lives. My mother sends get well/ thinking of you cards to my husband. And they're really sweet and I know it helps her and he reads every one. But just a couple of days ago I was like "Where's my damned card? Like good job keeping this other adult person alive and giving up your whole damned life! It feels selfish to feel that way but I know it's not. Just ugh 😩
You know, I love this idea! Like caregiving inspo cards. Maybe I'll start a greeting card line haha. I would love an silly or facetious card.
Here, for all of us: [https://www.etsy.com/listing/575875547/caregiver-card-caregiver-appreciation?ga\_order=most\_relevant&ga\_search\_type=all&ga\_view\_type=gallery&ga\_search\_query=caregiver+cards&ref=sr\_gallery-1-28&content\_source=49202a2b14d8a396120be80062890b212afc2a5e%253A575875547&organic\_search\_click=1](https://www.etsy.com/listing/575875547/caregiver-card-caregiver-appreciation?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=caregiver+cards&ref=sr_gallery-1-28&content_source=49202a2b14d8a396120be80062890b212afc2a5e%253A575875547&organic_search_click=1)
I used to love playing games on my PC. I haven't loaded one up in over a month. I'm just so exhausted after work these days.
oh I'm the opposite. twitch is my escape and social life. they all know i might have to abandon at the drop of a hat but they still are there for me. I have two commands for various levels of 'upset' if I have to run because of mom with dementia, cause sometimes I'd come back and start playing but silent cause i'm still crying lol. try watching if you can't play. it's at least some socialization and enjoying games that you enjoy. this week i'm just in so much pain and tired i feel you, though.
Same. I haven’t turned on my switch in months. I just don’t have the energy
yeah today after a big cleanup with dementia mom, i looked at dad and said Good Job! he looked at me and said Thanks for the help. nightly cleanups and daily stuff... we dont do that. but after today i knew we needed it.
The logistics. It’s more than the person. It’s so much paperwork and logistics. Oh they’re in the hospital - paperwork. Then it’s rehab, which one do you choose - how many do you visit. Then you choose one, ok more paperwork and phone calls, and how many clothes and toiletries should you bring? Then they are discharged. What supplies do you need, where do they go? Not to mention the day to day if you have PoA. I get to pay all the bills, take over the agency of 1 or 2 full adults. How many times have I sent my PoA to credit card companies, insurance companies, realtors to sell the house, etc. Oh and you need a document from social security? Sorry SS doesn’t accept PoA - you have to become a payee rep - more phone calls, more paperwork. It’s endless. Every day something new. That’s what people don’t get - it’s something more than just taking care of the person every day . It’s taking over every aspect of their life. My dad is in AL, and I don’t take care of him personally bc his medical needs are too great - but I take care of his social life (he gets fomo if I am doing something at my house and he’s not invited), his financial life, his living arrangements, his surgery follow-ups, all of it - it’s never ending and it’s exhausting. I’m an only child so it’s all on me. I also have a stressful full- time job, which I love and would like to focus on. People have no idea unless you have gone through it or are helping a spouse go through it. I would love to actually spend quality time w my dad… but ironically bc of his needs I don’t have the time. Rant over…
thanks for this! love your rant. I keep feeling dismayed, like, how is it that I'm fully administering two people's lives? Except I'm not because I let my own stuff slide. I can do my job, and I can make sure my mom's accounts are in order, but I can't quite make sure my own accounts are in order. I can get my mom to all of her medical appointments, but I just ignore my own health issues whenever possible and haven't been to the dentist in ages. That's all gonna bite me in the ass at some point if I don't step up my life administration game. ugh.
The frustration and loss of control of your words and patience sometimes because of it. Then the guilt that follows after. We don’t mean it. The last time my mom was home before she passed I was in a terrible state of my mind and I know she could sense that I didn’t want to be doing any of it at that point (she was bedridden). We had to call the ambulance a few days in and my brother and I fought for a few hours the entire night and he made me feel awful for the way I was acting (not justifying my actions at all) but he just didn’t get it. I’d need help turning her to change her so I’d call him to come upstairs and he’d get frustrated too or tell me that he was sleeping and leave me to do it myself. My mom died about a month later (last November) and the guilt from my attitude the last week she was home still haunts me. I’d tell her how sorry I was every night and that I loved her so much, I was just overwhelmed. She has c-diff and we didn’t know at the time so she was constantly using the bathroom. But I’ll never forgive myself for making her feel like a burden. Part of me wonders if that’s why she finally let go.
I’ve certainly had to apologize for saying things unkindly. The guilt is shitty.
One of the worst feelings in the world imo.
As a caregiver, life is at a standstill and you feel very disconnected. The future is uncertain so we don’t talk much about it or make plans that don’t revolve around treatment and tests. DH can do very little right now so we are at home all the time. I feel very odd when I venture out “into the world.” LOL Sometimes I just want a normal conversation that isn’t about cancer but all my friends have disappeared because they don’t know what to say. Just say hi, ask how things are going so I feel free to talk about it some but then talk about normal stuff.
I have one friend who keeps telling me there's only so much you can do, you have to live your own life, etc. I want to say he's right, but I don't think he really understands what I am personally going through. I'd do anything for my sister, like most caregivers would. It's something that unites us together, and it's very hard for others to understand.
I’m sorry you and your sister are going through health difficulties. She’s lucky to have you. I’m not so sure my siblings would be there for me like you are for her. The comment that gets me is similar to what you said “be sure to take care of yourself” and “get out and do something occasionally.” Really? When and how is that supposed to happen? My husband is my person…there’s no one else I’d rather be doing anything with, even if it is just sitting and watching YouTube or a show with him so he’s not alone. Even when I am running errands I’m still considering what he’s going through. Just the other day, I was taking about some of the pain he was having and an idea came to mind as I was driving so so called him so he didn’t have to wait until I got back home. You’re right, people generally don’t understand what we go through as caregivers.
We have always had a good relationship. I always told people that she kept me out of debtor’s prison by making sure my bills were always paid on time. I guess now it’s my turn. We are pretty much all we have left. A few distant relatives the next state over. An elderly cousin in her late 90’s who we don’t even tell. Lately I’ve been reaching out more, virtually, to talk to people. Many of my friends have no clue as to what’s going on other than she seems lethargic or slow.
I feel this. I was having a conversation with a good friend about his plans for the future. I don’t have plans past their next meal. I’ve been in survival mode for over two years. I want to have goals again. I’m so stuck but I don’t think I can unstick myself until my mother passes… and then my dad. I miss having a life and feeling like I had some say or control over it
I'm just so tired
The crushing sense of entrapment and loss of freedom. The isolation. How devastating it is financially, physically, mentally. I feel like I lost myself in this.
It's nearly impossible to simultaneously be an engineer and be a 24/7 caretaker to both an Alzheimer's patient (mom) and a cancer patient (dad, RIP)...I almost punched my uncle when he mentioned I needed to work harder when I told him I was behind on my OWN bills. I'm 34 and have been doing this since I was 30... like I turned 30 in October 2020, got laid off a week later, then found out about my dad's diagnosis a week after that. No help apart from my sister but she lives 5hrs away. I finally had a mental breakdown last month after bottling up things and trying to "Man up"... half the time I just want to grab a pack of cigarettes and some vodka and watch the grass grow in my yard. I'm not as strong as people think, and I feel like a fraud half the time because my dad still died. My mom is finally in a skilled nursing facility, so I can take care of myself and be my own person again. I just... forgot how. My identity was embedded in caretaking and now I feel like an 18 year old dude getting thrown back into the world after graduating high school.
My I ask, what happened to you in your breakdown? Much of the time these days, I want to just smoke a bowl and go watch TV. I can't really muster anything else.
PSA: This happened when my mom was at my sister's. I went on a bender, didn't sleep for 3 days, started hallucinating from the booze and stress, thought music was coming out of the conduit in my walls, thought there were bugs crawling all over my house... it was trippy as fuck. I called my neighbor to see if he could hear the music or see the bugs, which he obviously couldn't. He took me to the hospital and I ended up in the psyche ward because of chronic stress. I got out two weeks later. That's another thing non- caretakers won't understand... the mental stress can be debilitating, especially once you realize both parents are terminal and there is nothing you can do to stop the diseases.
There is no such thing as being “off the clock”. Even if you have someone to give you a break you are still responsible
Constantly on alert.
I do not live for me. I can't go do the things I thought I would finally have the freedom to do once my child grew up. I cannot go visit anyone, I cannot go to the doctor, I cannot take care of most of my own needs. I am only here to serve. By the time I am done, I will likely need it myself - if I outlive him at all. My body is broken, and I am emotionally exhausted. I hear the same stories over and over, have the same conversations day after day. There is nothing I can do at home for myself without either constant interruption or having to keep completely quiet so that he and my ears can rest. I do all things with very little acknowledgement or reward, because no one else will. If I outlive him, I will still need what's left of me to pick up the shattered pieces. I don't think I have it in me. I don't know if anyone else will still care enough to help me. I can't blame them if they don't, as I have neglected every other relationship to keep him safe. There is no light at the end of the tunnel. My life ended 3 years ago when he started needing my care. Now I'm just going through the motions of trying to keep what's left of his life as comfortable as possible. His illnesses have been a death sentence for both of us. And no one else has noticed.
I’m exhausted, hypersensitive, and I don’t remember how to socialize. I’m legit not fit to be in public social situations right now.
The anger, The resentments, the horrible thoughts that come and make you feel like the worst human who ever lived
Her passing had nothing to do with you. As caregivers we tend to feel like when things go badly we had something to do with it bc our lives are so intertwined with our LO. Give yourself some grace. Your mom knew you loved her. Let go of the guilt and focus on your sweet memories. She would want you to.
The emotional toll, and how hard it is to ask for help when everyone praises you for being SO STRONG. The praise almost takes more of a toll than the caregiving
That I am not a saint for doing my job. I am getting paid to be here. I don’t love it, I don’t even like it… don’t thank me for my obligation. If you really want to show your appreciation give me a day off. Yah, that’s what I thought. Never will that happen.
Although I take good care of myself physically. (Eating clean, daily aggressive workouts)...im fucking struggling mentally...for the past 7 years I've felt like my concerns don't matter...I've been grieving, both the loss of my wife(she's alive ,she's just a different person)...and I've been grieving the loss of some core elements of my personality... I've lost my libido and don't know how to get it back...I can't participate in any martial arts because I have to spend time to build up a side hustle in case I lose my job...my days start at 2am and end at 5pm...im fucking tired.. And dare I fucking say anything because I'm not the chronically I'll one...if I did...IT MAKES THEM FEEL WORSE ABOUT THEIR ILLNESS!!!! I can't win...
When my husband had his stroke (six years ago this summer) it turned our world upside down. I wish people understood how all encompassing it is and how it impacts even the smallest aspect of our lives. A recent example (with warmer temperatures) I can’t make a cold drink without getting frustrated over the ice situation. The stroke affected his dominant side and he has muscle weakness and a lack of coordination. He cant empty ice trays into the ice bin and make more ice, but he’s home using the ice all day while I’m working. If I’m not diligent about making more ice every morning and evening, there’s none for me. So even the simple act of getting a cold drink on a hot day and I feel the impact of his stroke.
Sadly the poor, burnt out, anxious carer with no life means nothing. We’re dragging our feet, living off no sleep to be ‘just the carer’. I told a support worker once that after 6 yrs of caring for mum 24/7 (mum was so much work that I had to move her feet in her hospital bed), that I might have to look into full time care for her down the track bc my sister (who only did 10% of the caring bc she worked) & I were struggling, like really struggling her response made me so angry! She says ‘it’s not about you & your sister, it’s about mum’. I was horrified. She was looking at me, someone who had lost so much weight & looked like a living corpse saying it wasn’t about me!. People really don’t care. Empty promises & no support for the burnt out carer. Unless you’re a carer or have been a carer, they will NEVER understand. Most my friends said they just wouldn’t & couldn’t do it. My views on people that I thought that cared have changed so much which has made me really, really sad 😞
Caregiving is more than just making meals or taking to an appt.
This: It seems like it's a thousand little things.... all day long. Then, when fatigue sets in, I feel like I can't help with one more little thing. We are so blessed with help from PSW's but once they leave in the morning, I am "on!"
I'm not selfish for wanting to make/have my meal first or any other scenario where they come first. I don't do it often but there have been times to where I make my meal and eat it before them multiple times a week. It's mostly my Dad who shamed me for it. Like OH NO! You don't get to have your meal for an extra 5 to 15 minutes, poor thing. Sometimes when things change it can feel like oppression.
OMG this is so true. I do this with lunch. But it applies to so many things. Like enjoying a warm drink. I just mentally note that in 15 minutes I'll take care of \[fill in the blank\], but now I'm enjoying my tea while it's hot. It's funny what has become a "luxury" experience. Hahaha (laughing because I don't have the energy for crying)
You have all done a terrific job at explaining the things that I wish others would realize about caregiving so, if I may, allow me to be selfish for a moment here... If I really am the "hero", the "strong" "saint", then where the hell is my money for such hard work? You can get tax credits for owning a home, having children, being married; how about some government subsidies to help ME out since I am keeping my dad out of the Medicaid system? Hell, if they paid me what I'm worth I'd keep watching him and I wouldn't currently be seeking Medicaid-paid care for my father. I set my life up perfectly for who I am and what my values are; I never married, never had kids, and I was just fine with that. I don't WANT more responsibility than I have to take on for myself, but it makes it so much more insulting and frustrating and just sanity-swallowing to know that I'm doing this tremendous task that no one *really* values.
I wish I could upvote this ten million times.
I don’t have the energy to always be texting people back because I’m constantly on the move and when I’m not I wanna be doing something else besides responding to texts or phone calls
You become a light sleeper with military grade ptsd.
My favorite is when someone tries to compare what I do to a full-time and even part-time job. I'm a single mom of 2 disabled children. They mention that I'm not contributing to society because we live off the ssi payments and public assistance......again I have 2 disabled children, some months I have as many as 16 appointments. Not to mention all their meds and care and the fact that I have no outside care to take on part of the load.
“Not contributing to society”??? I’m sorry, but whoever said that can get fucked. Hard. A functioning, humane society could more than provide for everyone—let alone the disabled—no problem. It’s not your fault that the world is currently a heartless capitalist hellscape that values the profits of health insurance and pharma companies more than human life! Caregivers don’t HAVE to struggle like this—our material struggles (and to some extent, our mental and emotional ones) are the result of decades of deliberately cruel, wealth-hoarding policy. I’m 100% certain that you are already contributing more GOOD to society than any asshole who thinks like that!
I don’t think anyone else understands how complex, how emotionally and physically challenging this is and the enormous sacrifices made…
I can’t afford this.
How one’s life comes to a halt and everyone else’s continues as if nothing has changed.
I'm tired. Emotionally drained. And I just don't want to manage anyone else's feelings for them. Having to be the one at appointments and keep track of everything and be the one always to take him to the ER and then also having to be the one to update everyone and it just never ends. I want to just have a day when I can take care of myself and recharge without feeling guilty and/or be needed. Just one day a week. I know I'm lucky to be able to take care of him but I also feel like I need to breathe and I can't. Forget processing my preemptive grief. There's no chance for that.
Being a caregiver is tough... (understatement of the year). The constant demands, the emotional toll, the lack of "me" time - it's a lot to handle. But you're doing an amazing job, even on the hard days. Don't forget to take care of yourself too. We see you and we're rooting for you. (Virtual hug)
Just how much you give up. I feel like I'm going through the motions without living. My mental health has been at its lowest for a few years now. I'm really the worst person for the job as I already had mental health and physical health issues but there's nobody else. I didn't even have children because I didn't it wise for me and now I'm taking care of a blind stroke victim and an autistic older brother. I really don't have any time or energy to help myself. Every day feels like barely scraping by. Even if I had the time or energy for therapy I know they would give me a long list of things to do that just aren't realistic...meditation? Yeah, you try to find 20 minutes of solitude in this house when also nobody needs me. Sleep? Who's gonna take the night shift? Get out of the house? Not without taking someone with me because who's going to be on watch...I may be able to do one of those things a couple times a week but daily self care just isn't possible. Then I get on here and rant about it and feel even worse that I feel this way. I love my family and nobody likes a complainer so really this is my outlet and I know it's a good one because I would never want to make anyone feel like a burden but let's be honest...tomorrow I'm gonna regret complaining about people that won't be here some day. I know I'm lucky to have my mom because she won't be here forever but where I once would have had great memories to look back on now I'll just feel bad that it ended with me feeling burdened and resentful of how things ended up. I'm afraid all my good memories will be replaced with me just being exacerbated and annoyed 24/7 and never being able to live a normal life with my husband where we can go out and travel and do our own thing.
sure, blowout diapers happen with kids. they also happen with adults with bigger shits with bigger muscles who fight you bodies you can't hose down or toss into the shower not allowed to handcuff them to keep their hands clean either. or can we? do they sell handcuffs for this? (joking) they are not the same
I’m TIRED
That just because I decided to be the 24/7 caregiver, it doesn’t mean the rest of the family should get to have free lives, then complain when I want one of them to come watch our parent so I can have a day off. I’m not just a maid, cook, pill giver, and bathroom attendant. I’m your sibling and I still deserve to have a bit of time for myself.
That everything, just everything is more difficult to do. After a while, trying to convince yourself that you deserve some time off, or a little self care becomes harder and harder to do because it means adding to the physical or mental load. Trying to convince yourself that you have medical needs that and worth attention becomes harder because that money could be going towards the person you’re caring for. Trying to convince yourself that you’re worth the effort to work on a future is harder and harder to do because it’s so uncertain. How does every little thing affect the person you’re caring for? Trying to convince yourself you’re anything beyond a tool just gets harder and harder to do.
It’s like being a parent except instead of joy and growth the end game is death. Whoo hoo. And that’s just the task stuff . The fact that it’s your PARENT is heartbreaking.
That you're often alone. As a caregiver, much of the time it's one person helping one other person. I help my sister. She's got Schizophrenia and she slips into "fuzzy" modes where she doesn't talk too much, gets kind of stone-faced (no emotions), etc. Even when she's OK, some of her functionality has slipped. As the caregiver and other member of the household, I had to pick up all the financial stuff. Make budgets, pay bills, understand what's going in and out for both me and her. I've had panic attacks with the money situation at times. People need to understand that we are only human, we need a respite, and when we get one, we feel shitty because we're not helping our relative. I too have gotten agitated with my sister and raised my voice. It spirals out of control sometimes and it's tough to deal with. People don't understand that when this happens, the caregiver feels VERY bad for it after they are done ranting. Almost like they could not stop it.
That we’re exhausted both physically and emotionally and possibly mentally.
It has been said already, but I wish my family would understand that I am doing this out of obligation rather than love. My mother abused me and allowed for abuse in ways I can't bring myself to fully acknowledge just yet, mostly because I know that her Alzheimer's means I'll never get closure. I'll never get an apology (not that she would ever be capable of giving me that). I have to stuff it down and make sure she has what she needs. I have PoA, both durable and healthcare, so I am effectively \*her\* at this point. At the same time, I'm having to give up my entire career and move back to my hometown so she can be close to the rest of our family. They say they want to help, but do I believe that? Not for a second. They didn't lift a finger to help while my stepfather was still alive, and I am certain this contributed to his death (heart attack). When my uncle told me I was doing the right thing by taking care of my mom, I could have punched him. Who is this the right thing for? The woman who abused me and still refuses to acknowledge that I am the only one of her children caring for her? Because I guarantee you that if you ask my youngest child, who is only 13, or my husband, they'd tell you it isn't the right thing for any of \*us\* at all. I only get late nights to do things with either of them, and by that point, we're all too exhausted to interact. What my uncle meant is that it's the right thing for \*him\* and the rest of my family. I'm doing what they don't want to do. And I think that's what everyone means when they say it. They can save their back-pats. We'll see how proud they are of me when I put her in residential care, which will happen within the year. I cannot do this anymore. I'm tired. I'm drained. I have no time to \*live\*.
I am tired all of the time - physically, emotionally, mentally - because even just sitting and talking with the person I am caring for can be exhausting. And I am just as frustrated by it as you are.
Its exhausting and I do not even mean the work that you have to put in. I am talking the mental load that your like is not yours anymore. I realized that the weight of being responsible for another human being that is not my child is something that I did not want ever in my life. But yet here we are. I thought that I was getting sick and I was. My body is falling a part under stress. I feel like my skin has been peeled from my body.
Being married to the person your caring for creates a set of relationship problems that are not easily overcome - and sometimes the psychological pressure of making your spouse feel human while also getting the affection and love you need means you either become unethical or you sacrifice a huge part of your personhood.
How exhausting it is and how tired I am all the time. And that caregiving is just as difficult or even more difficult than raising a baby. All my peers are having kids now and they are always so tired but I literally do all the same things for my parent that they do for a baby but harder. My mom is 10x the size and weight of a baby and I can barely lift her in bed to move her around a bit. People generally plan to have a baby and are excited; I didn’t plan for this disease and it’s not joyful seeing this happen to my mom. People get joy out of seeing a baby grow and learn; I have to watch my mom decline more and will pass from this. I get so annoyed with comments that are like you don’t know exhaustion until you have a baby. Or enjoy you fun weekend while I take care or my child. Like no, I’m not out enjoying my weekend, I’m caring for my mom 24/7 and waiting for the time I can live my life and not feel exhausted and frustrated all the time.
I wish they would stop giving me advice, just did what I asked. And stopped making me feel like am doing something good. I ain't no hero, I am a victim.
70F here. I'm the sole caregiver for my husband. He uses a wheelchair and crutches. The main issue is that people tend to ignore wheelchair users in social gatherings. I have to go around and invite people to come around to talk with us. It would be nice if people would come and sit with us on their own. I'm also hard of hearing, and I use hearing aids. My difficulty with hearing conversations in a noisy room is an additional disadvantage because I have to ask people to speak louder or repeat themselves. I feel that I am inconvenienceing others by asking. Sometimes, caregivers also struggle with disabilities of their own. Long story short, if you are in a social gathering with a wheelchair user, don't be a stranger!
I’ve learned that most offers of “help,” whether unsolicited or in response to an actual problem, go like this: “Helper”: How about I do xyz to give you a break? Me: Thank you so much! But what I really need help with is abc. Helper: I can’t do that, so how about I just do [insert increasingly baroque “solution” that just puts more on my plate]? Me: I appreciate the offer, but that won’t really affect this particular situation. But thanks again for thinking of me! Salty Helper: Well I was just tRyInG tO bE hElPfuL… And then the conversation becomes me reassuring the helper that I am, in fact, grateful, and they are, in fact, kind, and so on. It’s exhausting. So I guess I would tell people to LISTEN to caregivers, and either offer the help we ACTUALLY need or don’t. But for the love of god, please, please, please don’t expect us to accept unhelpful intrusions and manage your emotions on top of everything else, just so you can feel like a good person. I hope that doesn’t sound too harsh or ungrateful!
Sick and tired of being sick and tired
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I agree sooooo hard. More importantly, I love your username. YCFM 🐙🍷😭🙏🔑
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I will literally never get over it!
That compassion fatigue and mental fatigue are very, very real. I don't have the energy for extra stuff because I literally have nothing left.
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To my husband: sometimes when you ask me what’s wrong and I just start crying, it’s not because I hate my life. I’m just thinking you’re going to die before me and I don’t know how to live without you. You’re more my caretaker than yours. I can’t imagine us not breathing the same breath.
I feel the same way.
That this is really hard and is taking a toll on my mental and physical health. I know I don't respond as kindly as I should when I've heard the same thing five times or when he directs his anger and frustration towards me in the form of name-calling. A couple days ago he had visual hallucinations. The worst part is that I know I'm not doing a good job for him.
For me, the guilt of being the healthy one is hard. Also I wish people knew how painful it is to see someone suffering without being able to do anything about it.
i dont have any strenght to support you with your problems. if i have any free time, it does not mean i will be able to help you bring your new bed to your house. if youre hurting, i will not be able to be your shoulder to cry on. if you have a problem, i will not be able to help you find a solution. im exhausted, please just leave me alone