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I have been caregiving for my mother since I was 11years old when she almost had her foot amputated after a pregnancy. I raised my little brother basically myself because my mom was constantly in the hospital. When I was 18, my mother completely lost her vision and I stayed to care for her and my 5 year old brother. Fast forward to the present... I'm now 31 years old and still caregiving. My mom's condition has declined ten-fold and she has so many conditions that I feel even her doctors are overwhelmed. She is blind, end stage renal failure(8yrs with a failed transplant), has had a quadruple bypass, orthostatic hypotension (she constantly falls and faints), severe tremors caused by Lyrica, lymphedema, cellulitis and Frey's syndrome. She can no longer walk, feed herself, produce urine, bathe herself, or dress herself. She has dialysis 3 times a week and recently she had a fall and broke her leg in three places. She signed herself out of rehab because she only wanted me to care for her. I feel overwhelmed and overextended because I now have a 5 year old daughter who I adore and a supportive fiancee who don't get to see the best version of me because I'm BURNED OUT! I feel hopeless and I'm constantly sick these days. I have no time for myself. I have constant constant panic attacks due to be "stuck" in 911 (fight or flight mode). I am depressed beyond measure. My physical appearance is beginning to suffer. My brain is foggy. I'm getting clumsier and now I cry at the drop of a hat for nothing. My family and friends are constantly telling me I need to take a step back from caregiving for a while to focus on myself but how? I have gaps in my working history and no income. My brother just turned 18 and he has his whole life ahead of him but he seems drained from helping out too. I don't want the full burden on him either. I'm stuck at a crossroads of choosing to serve my mom until the very end or risking my mental health. It's been 20 years now and I'm burnt out.

Bhuyoor, life is unfair and it is unfair that your mom's was wrought with illness. And it is unfair that you got a very heavy burden from a very young age. But you have been valiant! Now, it is unfair for your mother to expect you to sacrifice your best years caring for her. I know you love your mom but now it is time for you to have a life without guilt. Let your mother know you are utterly overwhelmed and depressed and that you are going to find a better permanent solution for both of you, She won't like it because she will fear the change, but it won't harm her. What a fantastic daughter you are! You should fear nothing and have no guilt. You've done more in your brief life than most anyone else. If burnout causes you to get sick, then others will care for your mom anyway and who knows who will take care of you. Please look for alternate care arrangements starting today. Move onward and upward. You only get one life. Wishing you all the best life has to offer from today on!
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Reply to Geaton777
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You’ve been beyond a giving and caring daughter for your mom. Sadly, who’s cared for you? A child should never have been put in the position that you were. There is no logical person who could blame you for being burned out. The extent of your mothers care is past what any one person can do. She needs a team, either in her home or in a facility, professionals who can rotate in and out. Please set this in motion, if you’re living with her one of you has to move out, and do not fall for guilt. Remember you’ll still be caregiving only now in a different, more manageable way, being her advocate with the place or help she gets. And start living your life! Enjoy your family and your time
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Reply to Daughterof1930
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You sound BEYOND burned out. It is time to consider institutional care for your mother. You must return to your own physical and mental health. The fact that you have posed the question of exiting the caregiving role is an honest insight.

You need to speak to your own doctor and mental health provider. If they tell you that you are not fit to provide care anymore for her, that official statement can be used to involve state social services to mandate custody of her/placement in institutional care program...against her wishes, for her own protection.

Thank you for acknowledging your safe limit. Speak up now, before you find yourself CHARGED with elder neglect/abuse/improper care. Help manage a SAFE TRANSITION...then LET GO of the control.
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jcubed821 Sep 19, 2019
Thank you, thank you, thank you, for posting this.
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I doubt if Moms health has been this bad for years there is any money.

To get away from all this, your Mom needs LTC. Medicaid will pay for it if her income is low. At 11, someone should have stepped in. No child should be responsible for an adult and another child. Mom has too much wrong with her. LTC means you will practically have no responsibility. She will have everything she needs and laundry done by them.

If Mom is hospitalized again and refuses rehab, tell the Social Worker that you cannot care for her. Once in rehab you can have her evaluated for LTC.

I would not try to get her help in her home. You will have to deal with aides that may not show up for work and other problems adding to ur stress. If Mom is on Medicaid, ask about getting homecare. Also, transportation to and from dialysis. Medicaid may cover this. This would give you time alone while she does her treatments.
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jcubed821 Sep 19, 2019
Thank you very much for posting this. I had no idea that long term care was available through Medicaid! Thanks also for mentioning the problem with "at home" care with aides. Long Term Care sounds like the best choice.
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What stands out to me in your post is that your mother signed herself out of rehab because she wants you to look after her. To me, that shows very poor insight - that she doesn't realise she would benefit from rehab, and she is going against medical recommendations, and second her expectation that she would want and expect you to take care of her in a very compromised state which could have been possibly improved in rehab... AND that it didn't occur to her that a stint in respite would have been a very welcomed respite for you.

So, it sounds to me that her capacity to make good decisions is long gone. Are you her POA to make these decisions? Because, this is a red flag that you may need to get decision making in order if she won't follow medical advice and your preferences also. I wonder did you communicate that you didn't think it was wise for her to return home and not complete rehab?

The other thing that occured to me is the level of emeshment that you have with your mother. She and her illness have very unforuntately taken over your whole life, so that there is barely any space for you.

I personally feel you desperately need respite now. Maybe time to get into counselling for you to find your voice, your self, and some strength to move forward because there will be some tough decisions ahead, and it doesn't sound like your mother has an awareness of the burden on you.
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herdingcats Sep 17, 2019
I think this is a great answer. Praying for all involved!
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Sounds like you have done your best for a long time and your mother's care needs are now beyond your capacity. You will always care and have this compassion. It's time now for you to put on the YOU hat: a mother to a daughter, a sister, a daughter. You have a lot of living to catch up on. As a mother, if circumstances were different, your mother would want you to enjoy your life too.
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Reply to Pasa18
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My dear soul, my heart goes out to you. How horrible what you have and are suffering.You must, must, must immediately seek help, no matter what anyone says or how mad your mother gets, she must be placed into a facility. YOU must take a break from all the caring and torment you are suffering. If it is possible, go away for a few days on a mini-vacation once she is in a place. Try to get medical help and see about yourself. Is there some way you could take some courses in a field that you might want to work in? There are ways you can find jobs - I am just not current on that as I will be 86. Seek advice of the professionals out there who can guide you and help you. Help is available. As to the job past, I would just simply be completely honest with an employer and if need be, enter at the entry level. Once you start living a normal life, you will feel better and I am sure you will be on your way. YOU MUST ACT NOW AND PUT ALL OF THIS BEHIND YOU AND START YOUR NEW LIFE. I am praying for you.
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Reply to Riley2166
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Obviously this is affecting your mental and physical health. Please go see your physician and explain what you are going through and how you feel. This should be in your health records. You sound very depressed and may need medication to help you cope and get through this bad spell.

Others have suggested LTC for your mom and I agree 100%. She has too many co-morbidities to be cared for by you. You need to look into securing employment after she moves, that’s how you get past being a caregiver. Time to earn money and save for your future. You have gone beyond what anyone should be asked to do. Your mom will survive with the care of others. I am hoping you have MPOA for her healthcare.
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Reply to Harpcat
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You have identified two areas that need to change. One, you mom should be in a long-term care facility. She needs around the clock care that is too much for you to do. Two, you need career/education counseling. You have a long good life ahead of you to shape as you please. Obviously, you are a capable, strong person to have been able to do what you have done all these years. You know that you are a role model for your own child and that you don't want to be a burden to her. You are much younger than many on this forum and so the parent/child relationship with your mom is perhaps a stronger element. So rather than thinking of it as deciding for your mother what she needs, you are deciding what YOU need. If that results in your having less time for mom's care then she will have to accommodate that. You have supported your mother valiantly and now it is time for a change. You are strong and you can do this! There are social workers out there in hospital, rehab, cities/towns, and counties that can recommend options for your mom. There are career counselors, even high school guidance counselors (go back to your school you graduated from) and even aptitude tests you can take on line. Don't disregard your work experience gained from caring for your mother. There are organizations to help women leaving abusive situations in particular with career development; see if you can tap into their services. Look for any and every program out there that might be of help. Ask questions. While you are pondering all of this, promise yourself that you will go for a walk, preferably in the outdoors with your daughter, every day. If you're able try to raise your heart rate a little to burn off some of that stress by walking fast, teaching your daughter to skip rope, whatever, do so. Find something to work out that stress. I do wish you the best and please update us.
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Reply to lynina2
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Enough is enough tell her what you need to in order to make her understand you can no longer do this . Perhaps tell her that there is no more money and she needs to be put in a facility so that you can work and better provide for her that way . The bottom line is she is being selfish just wanting you to take care of her , real love like I’m sure you have for your daughter you would never do that to her . I had to go to therapy to learn that my mother only wants me and the selfishness behind what she calls love . Work on finding a Dr that will help explain to your mom that she has to go into a facility she needs Dr care she is too far gone for you to be dealing with this . You need your own life cause one day this will be over and then what ! You need to start getting your life in order make some money so you can take care of your own family and help your brother out , teach him to go forward in life . I wish you only the very best . Just one life to live think about how you want to live that life
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