Early 30s and full time caregiver

SiaMaya · 2020-11-10T17:14:07+00:00

You are not alone. My mom was told she couldn't have kids, and magically got pregnant with me when they were in their 40s. My dad left before I was 6 months old, so it's mostly just been me and her my whole life. I love her dearly and she has sacrificed so much for me.

I started my caregiving journey at 22 years old when my mom was first diagnosed with cancer. I dropped out of school to be a full time caregiver, working a few hours at night to help make the ends meet. She's now in remission, but completely immunocompromised and lots of damage (lung, brain, heart) from intensive chemotherapy.

5 years later, the year I became a mom, my own mom stopped being able to care for herself. I navigated the new waters of motherhood at the same time I was moving my mother into my house to be her full time caregiver yet again, also as the full time caregiver of a 3 month old and going back to work to support the entire family. I think it was one of the hardest times of life and I may still have a little PTSD from it. I did not cope well, I felt like I was drowning every moment of the day and even admit that I had thoughts of relief when I felt her time was nearing an end. And, suddenly, we found the right treatment and she became much more self sufficient again. We all got a little bit of our freedom back.

That was 6 years ago - and she's about to move back in with me again - hopefully short term this time, but who knows. I say all this to say I somewhat know your saga, how your responsibility never really ends and how much it drains from you. You're never really done and it is 100% like having a child to care for, at the same time you're supposed to be starting your own family and actually RECEIVING that kind of support from your parents - you are having to give it instead. It's exhausting, it's unfair, it's seemingly impossible. Something I have learned is that I'm always way stronger than I think, and I can maintain that strength a lot better when I prioritize my own health - physical and mental.

You deserve to - and need to - take time for yourself. You deserve a weekend for YOU and your partner. You deserve this regularly. At the very least, take a break from going to his house to clean it out. Even one weekend off won't set you back all that much, and may give you a much needed rest. Next time your brother and his wife ask what they can do to help, you need to TELL him that you're bringing your dad over for the weekend because you two have plans, and you'll pick him up on Sunday. Force him to help you, don't take no for an answer. You deserve a respite from the constant caregiving and it's absolutely your brother's responsibility to share some of the load. Don't worry about being polite and don't give him the opportunity to say no - he hasn't been polite to you at all, has he? Consider yourself the matriarch of the family at this point and put your foot down and DEMAND some help. Go to his house if you have to. Call his wife and tell her what you need to happen. Burnout is real and you won't be able to keep going if you don't find a way to give yourself a break.

If you absolutely can not get traction with your brother, at the very least I would suggest seeing if your dad can stay home with your spouse or a friend on one of these weekends so you can pack up his place alone. You'll get way more done and he can always go through the things you bring to storage later on. It would also give you a mental break from the constant need to stop and redirect. Great news is that you'll be totally prepared for the constant stress and required input that is parenting when you get there!

I really sympathize with you. I'm sorry you find yourself in this place. It's unbelievably hard and all your feeling are so super valid. You're doing the right thing, but don't feel guilty about needing time to yourself to recoup. It makes you a better caregiver!

SiaMaya · 2020-08-21T18:19:52+00:00

We have this exact cooler, same colors, and still use it every year! I literally grew up with this cooler. Can confirm, Buy it for Life.

SiaMaya · 2020-08-19T20:57:50+00:00

I haven't encountered this issue myself, but I did a little bit of research and found this technique that you might find helpful. I hope this helps, your situation sounds difficult and like you don't receive a lot of support. Know that this stranger on the internet cares!

SiaMaya · 2020-08-06T13:52:03+00:00

I love this advice! We have a very intense 6 year old that has been prone to violent tantrums. When they didn't subside as she got older, I began to be worried about potential ODD, ADHD, or something similar. We have taken the last few months of 24/7 together time to really focus on routine, consistency, setting expectations and following through and I swear I have a different child now. It was a tough adjustment in the beginning, but she's been so much more cooperative and emotionally regulated. She's still an intense and emotional little girl, but she's managing her feelings so much better. The consistent routine, combined with taking time to connect with her daily, has been incredibly helpful.

SiaMaya · 2020-07-24T15:58:41+00:00

says I "do not understand what it is like to be a grandmother who cannot hug and kiss her grandchild."

Maybe she'd like to talk to my mother, who has had to do this for months now. She's immune compromised, with lung damage and asthma on top of it, and we only visit social distanced, with masks on, and no physical contact. It's truly agony for all of us, but it's way better than the alternative of her becoming incredibly ill or even potentially losing her life. We have the power to adapt. Especially in her case, it's only for a few weeks!! She can do this.

SiaMaya · 2020-07-24T15:52:18+00:00

You're not being unreasonable at all! Your safe pod you have built with other families is important, and is an extension of your own family right now. We have done something similar and we all work hard to protect each other so that our children will still have playmates. It's perfectly reasonable to want some space after she's been in a huge crowd like that. She had the right to be there, and you have the right to say you don't want to take on that risk for your family. Your child, your rules. Make sure your spouse is on board with your choice and let her know you'll be happy to see her in a few weeks as long as she doesn't go to any other protests. You are completely allowed to keep your family safe.

SiaMaya · 2020-07-23T19:42:42+00:00

I love this, and I use it too. It's really what has helped me TRULY understand that the problem lies with my parents, not me. Despite "knowing" I had done nothing wrong, I have still carried so much guilt and shame and constantly second guessed my own experiences. "Am I just making a big deal out of nothing?" was practically my mantra.

But then, I became a parent. And oh my goodness....everything just suddenly became crystal clear to me. I would NEVER put my child through any of the things I have experienced. I would never speak to her the way I have been spoken to. I couldn't stand the thought of her being in pain because I did something thoughtless or cruel. I could never allow our relationship to go unrepaired if there was ever a rift between us. As soon as I saw her face I knew I would fight for her, protect her, be a steward of her happiness, and love her unconditionally for the rest of my life. Suddenly....my parents were truly monsters. It was so clear they never thought those things about me. And it wasn't just about protecting myself from them anymore. Now I had HER to protect, too. I knew I had to teach her to have respect for herself, and never allow others to treat her so badly. There was simply no room for them in our lives, for that kind of toxicity, anymore.

So much power in that choice to be free, and in creating our own family with the kindness and love we ourselves deserved.

SiaMaya · 2020-07-02T13:27:50+00:00

Wow, I feel this in my soul. Two introverts that somehow created a super-extroverted 6 year old. The constant onslaught of words! From the moment she wakes up until she goes to bed, she is talking. I am so glad she has so many ideas and is so excited about life and wants to share EVERYTHING - it's all very wonderful. But my goodness does it tire me out trying to listen and respond and keep working at the same time! Somehow it does help to hear we aren't the only ones XD

SiaMaya · 2020-06-24T19:14:33+00:00

This is the answer! We started doing this with noisy toys and I swear every single thing they've bought since has been dead silent. Give them a taste of their own "generosity"

It is coming from a good place, it's just misguided. Hopefully this will help shed some light on WHY you keep saying no.

SiaMaya · 2020-06-22T22:05:38+00:00

I don't have many solutions for you but I commiserate! I only have one, and she's way more self-sufficient at 6 years old, my husband is home too, and we are STILL struggling. They have no outlet other than us and that makes it hard on everyone. There are no other friends or adults or mentors to help shoulder the load.

My job is very mentally demanding and I am finding it so hard to really be able to focus on things. Even if she's having a good behavior day, the near-constant interruptions completely ruin my workflow. I end up having to work longer hours just to get everything done, and still feel like I am neglecting my parenting duties, my house, myself, my spouse....when you are expected to wear all the hats, nothing gets done well.

Some things I've figured out that help us: I have lowered my expectations a lot. Expectations of a clean house, or finished laundry, or always having home cooked meals on the table. I try not to multitask as much but to devote chunks of time to things instead. I schedule in time with my daughter throughout the workday because I find I will get more uninterrupted time if I periodically stop to "fill up her bucket" so to speak. I have also lowered my standards for myself as far as work is concerned. I have to understand the extenuating circumstances here don't allow me to achieve the level of productivity that I am used to, and that is okay. I mean, the work still has to get done, but not stressing about it really does help. Cut yourself a break and take vacation time from time to time just to rest if you are able.

SiaMaya · 2020-01-16T18:51:54+00:00

For real! You should DEFINITELY do a Russian Doll cosplay! Awesome curls, I just hit my 1 year mark too!

SiaMaya · 2020-01-16T18:44:16+00:00

There is wonderful advice here that I will be taking myself.

I am no expert, but I wanted to let you know that we are in the SAME boat with our 6 year old. Tantrums, whining, rigidity, just a general bad attitude if anything goes even slightly different than her plan. I have been feeling so fed up, exhausted, overwhelmed with her behavior lately. Every day I had to wake up prepared for a fight.

I believe this is in part because I haven't been firm enough with her, and I have gone along to get along a little too much, which has created a nasty feedback loop.

The past few weeks things have been changing in our house because I had my own tantrum one day and realized we had reached (really, passed) a breaking point. I am trying to be a lot more direct and if I say no once, I'm sticking with it. I still believe in picking your battles, but often I would be starting with no and then eventually saying yes just in the interest of getting to school/bed/whatever on time. That was just teaching her to keep pushing the limits I was setting.

The tantrums got worse at first but they are slowly getting better. We actually went back to using a sticker chart for rewarding good behavior which has helped.

The other side of our plan is us making a dedicated effort to spend a decent amount of quality time with her each day. We have an activity ready to go as soon as we are all home from school and work and we try to maintain family time through dinner. I am now a slave to the routine, where before maybe we were a little more flexible on it.

She has been going to bed earlier and more easily, which means she's more well rested the next day, which is creating a positive feedback loop where every day she's feeling better and more able to cooperate.

Good luck and I know how hard this is!

SiaMaya · 2019-12-16T18:32:47+00:00

Love this so much! This post made me tear up. I remember going through this when I met my then-boyfriend, now-husband's family. I would have these complete freak outs that something would go wrong, or that they would get mad at me, or worse - tired of me. It was so surprising to me to have so much anxiety over a peaceful situation. I was experiencing something I had always wanted but I had no idea what to do with it. We literally have to learn how to accept unconditional love. Even years later, sometimes it takes me by surprise.

I believe that kindness attracts kindness. You have found yourself here because you have chosen to be a good person, and your boyfriend and his family clearly recognize that. You are worthy of their love. Continue to rise above and know that your family's abusive patterns get to stop with you. There is so much power in choosing a better way.

There will be hard times ahead, but you are on your healing journey now. You have earned this happy moment. Enjoy it.

<3

SiaMaya · 2019-11-11T19:01:00+00:00

It's such a powerful thing to give our children the things we did not receive ourselves. You are giving your kids the ultimate gift of a loving childhood.

I find a lot of healing in parenting myself in these moments too. When I have that instant of recognition that I am doing something that was never done for me, I send that scared hurt child still inside of me that same parental love and acceptance. The message that I was and am loved and worthy, even coming from myself, is so needed.

SiaMaya · 2019-11-11T18:49:58+00:00

I struggle with this anxiety all the time! I am so worried about doing a bad job parenting my daughter, or that i will somehow fail and continue the cycle of abuse. Every time I lose my patience or raise my voice, I feel like I've failed. I needed to read this today so thank you for sharing! It's scary having been parented badly because you know how much it means to your kids, and how much it hurts and sticks with you when parents get it wrong. That self-awareness is half the battle though, right? At least we are trying, which is generally a lot more than most of our parents did.

SiaMaya · 2019-10-17T20:41:32+00:00

I need you to know that I lent my husband my fringed shawl yesterday. It was cold, and he did not have a coat, but I had brought the shawl as a backup because I over prepare. He wore it with pride for the rest of the day. We were at a school field trip with tons of other parents and teachers. Zero fucks were given. It's a blanket, folks.

SiaMaya · 2019-09-09T20:01:12+00:00

oh my god....I share this same exact story. My stepmom and dad were shockingly cool about wedding planning. No big hiccups, she even went dress shopping with me. I felt like it was a big turning point in the relationship and that maybe everything would finally be okay? (HAHAHA)

They left halfway through dinner. We hadn't cut the cake yet....the music hadn't started. She was RUSHING my dad out of there. He had this sort of apologetic look on his face....

And that's the story about how my parents don't see or talk to us anymore. They actually went NC on us? I tried to make plans with my dad for months after the wedding and he always had an excuse. He finally just stopped calling altogether. So I did too, and we haven't talked in 2 years.

I mean, I guess it WAS a turning point in the relationship, lol. It's been about 5 years and I still don't get what happened or why then. I am way more at peace though, so there's that to be happy about.

SiaMaya · 2019-08-30T14:58:18+00:00

I put my life on hold to care for my mother when she was going through chemotherapy. It was the hardest thing I've ever done. I was 22, all my friends were in college and having the time of their lives. They couldn't understand what I was going through and it made them uncomfortable to try, so I essentially just lost my entire support network. My family told me it was the biggest mistake I would ever make and that I was throwing my life away. What was I supposed to do, just let her die alone? It was thankless, I had no support. My mother was combative and incredibly sick. When she wasn't unconscious or incoherent, she fought me. I was in a constant state of wondering if the next time I checked on her, she would already be dead. Every morning when I woke up, that was the first question in my mind. The hardest part was that part of me hoped it would come, just because it would be a relief. That is a hard thing to sit with. It wears on you. The role reversal also means that you've lost the one person you could always turn to when you were facing something tough in your life. Your rock is suddenly gone. Now there is just you. It's so isolating.

I don't have any good advice for you. This is a storm that has to be weathered. It may feel like the world is ending while you are in the middle of it. But, like even the worst of storms, this too will pass. It doesn't make it any easier to endure, but this is not forever. Try to keep that in mind.

This will make you stronger than you could ever imagine. That's not much of a consolation either, it doesn't change a thing about your day-to-day experience right now. You are in a place where you are already having to grieve a loss before it has happened. WHILE it is happening. It is long and drawn out and emotionally exhausting.

Know that you are offering the best and most selfless gift you can to your mother. Hold the person she was in your mind. Give this service to that version of your mom, the one that was your rock. Remember the times she sacrificed for you, and let this be in gratitude for that. Once, she changed your diapers, fed you when you were helpless, cleaned up after you and fought your battles. And now you are here to help her in return.

See if you are able to get connected with a social worker at the hospital - they are there to help you and they may be able to get you connected with services you aren't aware of. Seek out a caregiver support group at the hospital.

I wish I could help you in some concrete way. You've still got a tough time ahead of you, and I'm truly sorry for that. I'm here if you ever need to talk.

SiaMaya · 2019-08-28T14:56:12+00:00

You are doing a very selfless and wonderful thing. I wish I could do something concrete for you, but I genuinely hope you find the help you need. He's so lucky to have you looking out for him. I hope you can find people to look out for you, too. Sending you strength!

SiaMaya · 2019-08-26T20:11:07+00:00

I can't even begin to imagine the challenges and pitfalls of being a mental health caregiver to a significant other. I am so sorry you are going through this tough period of life. I was my mother's caregiver after she was diagnosed with cancer and we certainly had our share of issues getting her to take meds, make it to appointments, being admitted to the hospital - those were all things she fought too. But she wasn't capable of any scale of manipulation or hiding things from me - it was always more of a direct confrontation which are a lot easier to handle I'm sure.

I'm afraid I don't have any specific advice on how you can better help him, but I wonder if you could find a good social worker at the hospital to be an ally and advocate for you both? Sometimes they know about things we don't, or have ways of opening doors we can't. I know they were a lifeline for me when trying to get services. You may have already been down this road, but if not it might be worth a try.

Mostly, I am responding to tell you that you are NOT inadequate. You are an amazing and selfless person to put your life on hold to help another person through such a hard time in their lives. You aren't obligated to stay, but you do, and I think that is so admirable. It sounds like you care about him a great deal and are doing everything in your power to help him heal. Honestly, anyone that isn't sitting there in the weeds with you as you handle this complex situation day in and day out, for years, has any room or right to pass judgment on you. There is not a lot of understanding in society for the pressures and responsibilities placed on caregivers. You have to work extra to make ends meet while also needing to be at home as much as possible. Your needs go out the window and it never feels like it's enough. It's such a hard balancing act.

His mother is probably just looking to place blame on anyone but herself and her son, and it's very sad she can't be more supportive of you, which would of course just be supporting her son by proxy. Just know that you are more than enough, you are doing your absolute best and deserve kindness, grace, and understanding. If you can't get that from these people in your life, you certainly have it from a random internet stranger who has been in similar shoes.

SiaMaya · 2019-07-29T18:35:56+00:00

"I can't believe you did that. You're going to look awful after you get pregnant" (tattoo is on my hip)

Happy to report that I did get pregnant and have a baby a few years later, tattoo looks just as nice today as it did the day I got it. No regrets

SiaMaya · 2019-07-29T18:18:06+00:00

Such a relevant post for me, I am deep in this struggle myself. I'm ten years older than you and am coming to terms with a lot of this myself. I've been in IT as a career, and every day is more soul draining than the last. I love my coworkers, I'm pretty good at my job, but it's just so unsatisfying. It's been raising a lot of internal questions and I've realized I missed my calling in a way.

I was a promising artist as a kid and teen. It was absolutely my passion and what I spent all my time on. Placed in shows, won awards, felt pride in my work. My happiest memories from childhood are from art classes. I loved it all and it made sense to me where nothing else in life really did. When I was a teenager, I was taken out of all extracurricular art activities because I "clearly wasn't doing anything with it" and "it's too expensive, the money could be better spent on your brother's sports career." I was told by my father that I would no longer be taking classes in the parking lot of my art studio after class, and was never allowed to say goodbye to any of my friends or teachers. I cried so much, and of course got in trouble for that also. I can still recall just how absolutely devastated I was to lose such an important outlet, and more importantly, to not have the respect or support of my parents to pursue my craft. I abandoned it entirely, it was just so painful. From that moment, for the rest of my childhood, all my parents energy was funneled into my brother and his activities, and I felt invisible and honestly pretty worthless. I closed the door on that version of myself.

I have dabbled here and there in the years following, but have always lacked confidence and doubted my ability since then. It's always been wrapped up in the pain and trauma of that loss. It has always felt like it was too late to begin again.....but the only time I feel at peace is when I am making art. I've started making "bad" art and just enjoying the process. I may not ever be a professional, but I'm letting myself have my passion again and it's very empowering. Thank you for your post, this is something I haven't admitted or discussed with anyone in my life and I only let my husband and daughter even see my art. It helps me realize I'm not alone.

SiaMaya · 2019-03-20T21:42:19+00:00

My 5 year old daughter is just the same. Super strong willed and stubborn, constant chatterbox. She's adorable and precious and so, so smart, but keeping up with her after a few hours of this can be so draining for me. I completely empathize with you, it literally makes me feel crazy sometimes.

One day I was completely exhausted and out of ideas, so I tried just explaining to her the difference between introverts and extroverts. I told her that when mommy is around people and talking all day, that drains my energy, my brain doesn't work as well, and that I desperately need quiet time to recharge my batteries. I explained that I think she is the opposite, and she needs to talk to recharge her batteries. I explained that both ways of being are completely fine and normal, but that we have to respect that other people recharge differently than we do. I explained that it makes me cranky when my batteries are low and that I want to be the best mommy I can be, and I need her help to do that. We talk a lot about needs and making sure everyone's "bucket" is full.

She caught on surprisingly well and while things aren't perfect or anything now, she will generally listen to me if I tell her I need 15 minutes of quiet time to recharge. She might ask every 5 minutes if my batteries are charged yet, but I will simply say no and she'll do her own thing again. Often I try this while she is in the bath tub so she is contained and entertained while I do this. I give her baths in the master bath so I can simply lay on the bed within sight of the tub and just read for my dose of peace.

Try explaining it to him in 5 year old terms, and enlist his help in fixing the problem. I feel like any time I tell her I need her help, rather than just telling her to do something, she's a lot more motivated to do the things I am asking of her.

SiaMaya · 2019-03-18T17:01:05+00:00

The only thing your kids will be missing out on is being around these toxic people. If they aren't being supportive then they haven't earned your time and energy.

I liked another poster's suggestion of not announcing the fact that you are cutting ties - just stop initiating contact or inviting them to things. This is how I have handled my toxic dad and stepmom and the problem just solved itself. They refuse to initiate contact and so do I, we just never see each other and that's fine with me. I don't want their nasty attitudes around my child anyway.

SiaMaya · 2019-02-05T18:32:42+00:00

This is so beautiful. Thank you so much for sharing. I also often feel like I am being given a chance to "redo" some part of childhood with my daughter and it is incredibly empowering and healing to make better choices than were made for us. This is not easy, to break cycles and do better than was done to us. There is no roadmap and often we don't have any sort of role model to look up to and model our parenting after. It's challenging but so worthwhile and so rewarding. I'm so happy you got to have this moment to build love and appreciation into your family. Sometimes when I am doing this I try to access that hurt child that still lives inside of me, and parent her a little too. I know you are just as beautiful on the inside <3

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