Hi, I'm new to this forum and this is mostly a vent but I could really use some advice please... (hopefully this isn't too much of a mess lol)
I've been my mom's caregiver since I was around 14 (I'm now 24), my mom is 63 and disabled.
She has many health conditions (arthritis, fibromyalgia, kidney disease, insomnia, anxiety, restless leg syndrome, neuropathy and undiagnosed sleep apnea)
She also seems to have some type of personality disorder because she has unpredictable mood swings (not dementia related) & can be very controlling, pushy and mean at times.
She still drives a little and can bathe herself and do small tasks, but needs daily help with housework, cooking, cleaning, daily tasks, talking her through her anxiety, help w/ getting her things etc etc.
She has some "good days" but she's getting worse & on most days when she's not feeling well she needs alot of help & needs to vent about things daily, which I try hard to listen but it's very draining and depressing :(
We live together (just her & I).
We get along ok on days when she's happier, Though I would reallllyy love a break since I'm very tired & I pretty much never get privacy.
I tried to ask for a few boundaries but she doesn't respect most of them. She also still treats me like a kid & believes I can't handle basic tasks without her help or reminding me of things constantly (Ugh!!)
I was ok with all of this until last year when I realized how controlling she was when I had to get a part time job to afford bills, when she got really mad at me that I wasn't spending all my time with her she would blow up at me a lot and say things like "You love that job more than me!" and "I bet you wouldn't make mistakes like this at your other job!"
When working this job I made a really good friend who I love spending time with & talking to. My friend would come over to visit once a week & call a few times a week. I didn't realize how badly I needed some time away from caregiving & how much fun life could be
But my mom would be mad at me for talking on the phone with my friend, mom was suspicious of why I was having a good time talking & laughing with my friend so she assumed we were plotting things behind her back and wanted to try to end my friendship (it didn't work, lol). My mom also threatened to leave because of this & gave me silent treatment for two days. Thankfully she became more accepting of my friend but still gets offended at times.
I believe this had a lot to do with losing control of me since my entire life has been pretty much just the two of us & we got along ok until last year (she also homeschooled me) so her being disabled, me getting a part time job outside of home & a friend makes her upset?
I've had anxiety, depression, undiagnosed ADHD and burnout for a long time (got worse since the pandemic) but I've been quiet about it since my mom also has bad anxiety & I don't want to trigger her again or make her sad. She still cares about me too
I also feel bad cause the past summer (2020) my mom had her knee replaced & needed my constant 24/7 care afterwards. A month later before she finished healing, her knee was re-injured in a car crash & she had to restart her healing progress & got PTSD from the accident. (Her knee never fully recovered)
I'm an only child & don't have any siblings to help. My stepdad died in 2015. The only family members are my grandma (88) & my uncle (62), who's busy taking care of grandma. Basically I'm alone with taking care of my mom & she will not accept help of any kind. Many years ago she said her only wish is to not be put in a NH or AL.
I'm also afraid that if I ask for help that she'll be upset with me. I feel really guilty about this, I know she can't help that she's disabled but I also know that I can't do this forever. I feel so guilty. And I want to spend time with my friend but I can't because of the pandemic
If anyone has any advice I'd really appreciate it. I'm honestly feeling pretty lost right now :/
How do I know? Because my husband's ex wife is the mirror image of your mother, minus a few years. She preyed on her children (5 of them total) to wait on HER hand and foot until they each moved away out of pure necessity, until there was only one victim left: the youngest. By the grace of God, she got pregnant by a military man and had to move across the country a few years ago, forcing her to get away from the horribly dysfunctional life her mother created for her.
She now has a 4.5 year old daughter who she's crazy about, is newly divorced, but has her OWN life and home in a new city and state. That's what it took for HER to get out of the nightmare she was living in.
What is it going to take to get YOU out of the nightmare YOU are living in?
P.S. Her mother is 100% fine, by the way. Has Medicaid caregivers coming in to help her out, cook/clean, etc. a few days a week and goes to the hospital regularly by ambulance for her opiate fix.
Figure a way out of this mess, for YOUR sake. YOU deserve a life of your own. Your mother has you hoodwinked into believing the lie that you don't. Look into online therapy, at the very minimum, to help you see the light while you're still young enough.
Good luck
You could easily have 30 more years of this--ready for that?
You've given up your LIFE for mom. And it's time to take it back. Unless you truly WANT to spend your entire life caring for someone who could likely get by with aides coming in a couple days a week.
Mom has kept you infantilized very well for your whole life. Whose idea was it for you to not get your diploma? That alone kind of stops things, as many jobs require that as a minimum for employment.
Before you have your 'come to Jesus' moment, have all salient info at hand: APS, Medicare, all 'aids' for the aging. Then when she balks at something you have planned, you can give her the info fo transportation and such. Let her be the adult she needs to me.
You plan to move out? That would be huge and wonderful. I have 4 adult nieces who have never left home and a really controlling dad. Ages 34 down to 24. they don't date or go anywhere unless they all go together. It's kind of sweet, but since they are completely unable to function w/o one of the other sisters...and ONLY with dad's approval--it's weird. When I was 34 I had 5 kids and worked PT and ran a home. Point is--I had a LIFE. Even had I not married, I would not have stayed in my parent's home past about age 22.
A healthy parent will WANT their kids to grow, spread their wings and fly.
I have a 74 year old friend who has rheumatoid arthritis, fibromyalgia, and now COPD on oxygen and the care of an 80+ year old husband with Dementia. And she still does things for herself. Maybe not as fast, maybe the house isn't as clean as she would like but she still does things for herself.
Another friend had the care of his MIL after his wife passed away. He ran the family business out of his home. When he needed to be away, he set MIL up in her favorite chair. He made sure the remote and phone were near by. She had water and a snack. His business was local so he would go home at lunch to feed her and again set her up and go back to work. He did this until she passed,
A 14 year old should not be left with the care of an adult. You were entitled to go to school, have activities and friends. There were programs that Mom could have and should have taken advantage of. Of course you crave time with people your own age. This is how we grow. Like I said Medicaid in home can provide aides so u can work. You may want to check with Social Services to see what other resources you can take advantage of. Maybe Mom would enjoy an Adult center during the day. Moms had transportion there and back. They offered physical therapy and even bathed Mom. She got breakfast and lunch there. Medicaid may pay part or the full amount. Of course, the centers are closed because of COVID but they will open again.
You have been Moms everything so of course she is jealous of you having friends. You need to acknowledge to her you know why she reacts the way she does, but she is not being fair to you. You need to have a life. Being her constant caregiver is not giving you the ability to spread your wings. So she and you have to find ways that you can have a life outside of the one you have with her. You need to work for your future. She needs to find resources to help with her care. Get her out and about. You also need to realize at 63 your Mom will not improve. She will need more care than you physically can give. This means Longterm care with Medicaid paying for that care. If you haven't done it yet, you should have POA on Mom. See about Legal Aide helping you draw up paperwork if u can't afford a lawyer. Do not do the online thing. With Moms problems, getting Dementia may happen. You need to be able to make decisions for her.
Just thought, Medicaid also provides transportation for appts. That way Mom can see her doctors while you work. You can do College classes online, which should be easy for someone who was home schooled.
Good Luck.
Please reach out to someone that can help you. Speak to a social worker to see what is available so you don’t have this heavy burden all alone.
Reading your post brought back so many heartbreaking memories of when I was a full time caregiver to my mom.
Take care, dear lady. Sending a bazillion hugs and prayers your way.
Now that being said, it's really not right that your mom expects you to do so much for her. You are only 24 yrs. old, and have so much of your life ahead of you. And your mom is young too. Shame on her for expecting you to give up your life to take care of her. That is wrong. She should be encouraging you to spread your wings, and fly away, instead of guilting you to stay and be her caregiver.
You both sound like you are codependent on each other, from reading your responses to some of the other responders. It also seems like you are enabling your mom as well, which is never healthy for anyone. I know you love your mom, but it's time for you to grow up, and get a life of your own. There are government subsidizes places that your mom could go to, and receive the care she needs, and you my dear, need to get your GED, and if it's your desire, go to college, and start living the life you deserve. Your mom could live for another 37+ years. Are you really willing to give up your life for hers? I pray not.
Perhaps you might need to seek out some therapy for yourself, so you can better understand why you have allowed your mom to control you as you have. It might just give you some good insight into how to cut those apron strings once and for all. Wishing you the very best.
Your posting was actually painful to read. My heart breaks for you.
It is obvious that you love your mom. I know you say that she cares about you as well.
I am sure that she loves you but she is expecting entirely too much from you.
Perhaps she isn’t capable of giving you the love you deserve.
I am sorry that your mother is suffering.
She absolutely needs help but not from you.
You have done more than your share.
She requires more care than you can give her and this could go on for 20 to 30 more years.
You were robbed out of your adolescent and young adult years.
You say that you were homeschooled.
What about college? You need to prepare for your future.
What kind of job did you have? Who is with her when you work?
Of course, you deserve friendship and time off to have fun.
How is your mom supporting herself?
You need to be honest with your mom. If she gets angry, oh well...She can’t control your life forever.
If you are fearful, have someone else around when to speak with her.
Maybe write down what you need to say, to help you formulate a plan for her care. Also write down your needs and dreams.
Your life can’t continue like this. Learn to love and care for yourself.
If she has to go to a facility, so be it.
Get in touch with a social worker that can help you come up with a plan for your mom’s care.
You deserve better than this. Your life is equally as important as hers.
Stay in touch. We care.
It really means a lot!!
Honestly you opened my eyes a bit on the reality of this being really long term. Yes I don't really think I can do this much longer without some help or occasional breaks at least.
Yes I do care about my mom.
And I know she cares about me. A lot.
I honestly miss the way things used to be when we could be happier together. I don't think I highlighted her good traits well enough in my post, though recently they've been harder to see tbh.
As for your questions,
Yes I was homeschooled. I don't have any plans for college yet, but maybe someday. I think I want to prioritize reducing stress at home first. Though I'm going to try studying for my GED sometime soon (I wasn't able to fully finish 12th grade).
When I worked at my other job it was part-time on weekends only (about 4-5 hours on Saturdays and Sundays).
There wasn't anyone to watch my mom while I was gone, but I helped her with what she needed before I left. I had my phone with me so she could call if she needed to and I would also call her on my break.
I know that she's very stubborn and doesn't think she needs anyone else to help her while I was away.
If I go back to work, I'm going to see if I can find/hire someone to help while I'm away since she needs more help now than before (if she accepts the help, hopefully)
I worked in retail. I really enjoyed working there. I also know I learned some good life experiences to work a job outside of home since I was pretty sheltered and isolated most of my life.
I'm not currently working there since I'm on a leave of absence because of the pandemic.
I definitely don't want to expose my mom to Covid.
But I heard that the state we live in will release vaccines for family care patients & caregivers in early March, so soon we'll be vaccinated and I might get to go back to my other job soon. :)
We were able to get signed up for me to get paid as a caregiver through her medicaid, and she has disability so we're able to get by with the bills. I'm really thankful for this.
I'm honestly dreading "the talk" with my mom about getting help. It's best if I tell her by myself since she would probably feel threatened if someone else is there.
I kind of have an idea of what I'll say, but I'll definitely use your tip about writing it down first (Thank you!!).
I'm gonna try to see if her insurance covers home respite care (I know she would refuse if she has to to to a facility, even for a few hours). If so, maybe she'll accept that. She'll probably refuse, but it's worth a try.
I understand that she's a very strong and determined person & it's very hard for her to lose a lot of her independence because of her disabilities.
I want to try to find a compromise that works for both of us.
Putting her in a facility is definitely the last resort. I'm gonna try to see if there are other options. Maybe if I explain things to her she'll understand.
I admit I'm pretty nervous, especially if she gets upset.
Thanks again for your reply, I feel guilty for venting but I honestly feel like I'm not alone anymore :)
I hope you have a great day/night!
We're able to get by with the bills since I recently signed up to get paid a little from my mom's Medicaid program to be a caregiver. I'm really thankful for this.
Though I really want to go back to my job and hope I can, I like working there and I miss it. I'm hoping that we can both be get vaccinated soon and then I'll feel safer to go back if mom will be ok for a few hours on the weekend
I vote for developing an escape plan and just leaving as soon as it’s doable. You can call APS to report a vulnerable adult if she truly can’t live alone.
She could live for decades more and you deserve your own life, free from her control over you.
Blessings to you and thank you for being such a kind, conscientious person despite the burden you’ve wrongly been expected to carry.
I'm honestly feeling a lot of mixed emotions and guilt over posting my vent. I think I didn't highlight her good traits enough.
I do still care about her and I know she cares about me a lot.
I think a lot of her anger comes from losing most of her independence and control because of her disabilities. I feel guilty about venting about her
I'm hoping to find a compromise that works for both of us.
I'm going to try to look for other options first because I know I can't continue like this much longer without some time away once in a while...
Thank you and I hope you have a good day/night :)