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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.

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Only you can stop this cycle, your mother has trapped you & your brother in cell with invisible bars, it is time to let yourself out.

Refuse to take her back home, force the issue. Say No, over and over again. She needs to be placed in a nursing home.

Start looking for a job, any job, take what you can get. Have your brother do the same. You hold the key in the palm of your hand...use it!

Sending support your way!
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You have gone above and beyond in your mother's care. But now, your mom's conditions are so complex that it has become dangerous for you and her. She needs two people for transfers for example. If you were to injure your back, you could become a burden to your own child. It is time for your mom to be taken care of by a team of caregivers in a professional setting. You can still be her loving daughter and support her emotionally and physically as a supplement to her care in facility. You need to share exactly what you have written here to the hospital social worker....in fact any social worker that you encounter in your mother's hospitalization and rehab. They need to know. I am worried for you. I am not criticizing by any means, but your difficulty in figuring out what to do is a little like a woman trying to leave an abusive marriage. I wonder if you might be able to tap into an organization that helps women in that kind of situation. Like them, you need assistance in developing job skills and undergoing therapy concerning your childhood and adult caregiving. The other place you can seek assistance in moving forward with your life might be a social worker connected with your town or county senior council or even hospice social worker. You might consider speaking with a career counselor (even at your old high school). You are not alone in this journey. There are professionals who can point you to various programs and help you break down the seemingly daunting but necessary change in your life into small attainable steps. In the meantime, while your mom is in hospital/rehab, make sure that you are getting a full night's sleep, eat well, and walk outdoors and start telling anyone and everyone that you are looking for work:) Even part-time is a start and will give you some perspective. You have been very strong for your mother, but now you need to be very strong for you. It is time to plan for the future. It is time for you to live your life. This is something that you have earned and something that your child will benefit from too! You can do this!
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Update- my mother has been going back and forth between home, hospital & rehab since Aug 2019. After her fall and breaking her leg in 3places, she ultimately just had her leg amputated last month(Dec 2019). At this time, hospice was mentioned a few times. Fast forward and she was discharged from rehab last week and the pressure is insurmountable. She is totally incontinent now and no longer has core strength to assist me with transfers. This means when I move her from bed to wheelchair or wheelchair to car, she cant sit back in the seat herself or adjust herself( even if that means sliding in the floor like jello). She can no longer even sit up straight in a bed on her own or roll over. (Yes, I have to manually do everything when I change her diaper).I took her back to the hospital last night because of some extreme swelling in her face and hands. They dialysed her and are trying to discharge her tonight. I was straight forward and told the case worker at the hospital that I am struggling with caring for my mom by myself and her condition goes beyond the scope I can care for anymore. They said we would review our options. On one hand, I feel immense relief and on the other hand, I feel guilty like I'm giving up on her. Still, she insists on coming home. I don't even know how to explain what I'm feeling to her because I know she is going through so much worse. I will see what they say tomorrow but I'm uneasy about telling her that she cant come home right now. I also dont understand why the hospital/doctors keep sending her home when she's in this condition.
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Isthisrealyreal Jan 2020
Because you keep taking her.

If I was your aunt I would hold you in my arms and tell you that you have NO reason to feel guilty. You have gone above and beyond to help your mom. She now needs more care then you can realistically provide, whether she can see that or not doesn't change the truth of it. I would tell you that you need to tell her that you can no longer do it and if she makes it harder then it is already that you need to go no contact with her for a while to regain your balance and health. Then I would hold you while you bawled your eyes out over this no win awful situation. Then I would wipe the tears from your eyes and take you to tell her and the hospital that you are no longer a safe release plan.

You matter, your daughter matters and your fiancee matters, this is not all about your mom anymore.

Please get her the village she needs, no matter how mad she gets, it is for her best interests.

Great big warm hug!
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Good grief, one thing is a given and that is that you can no longer carry on like this. You'll burn out, but you've already reached that point. Your mother needs facility care. You stuck it out for 2 decades - wow!!!
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I think you’ve answered your own question - burned out - no offence but you can’t care for another in that state. Especially one with many medical issues.

I appreciate its its hard to make that decision to let others take on the care of your mum - but you have so much to look forward to - time with your fiancé and 5 year old daughter.

Plus it will mean your brother can have time to recover too.

Your mums multiple needs means that 24/7 care is needed. Please help her, yourself and and your family and get her into care. When you feel up to it you can visit.
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You can find friends and begin to rebuild your life at CoDependants Anonymous, a 12-Step program for people who have let care taking overwhelm their lives. There's literature and meeting lists on line. Good luck.
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anonymous739426 Sep 2019
Thanks for posting this Betsey!
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Please consider that you can't do this alone. When the caregiving becomes too great place your Mother in a facility perhaps even with hospice and become just her daughter again. You need to live your life and I'm sure you Mother if she could say so would agree.
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You really need to start taking care of you - you should never have allowed yourself to do this to yourself for 20 years.
Get out now.
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Your mom has progressed beyond your ability to care for her all by yourself. She needs to be placed into full nursing care - either round the clock aides or a facility. Ask her doctor if she qualifies for hospice (end of life) care. Most health insurance will them pay for this type of care.

Consider what you want to do with your life - if mom's care was not part of the plan. Marriage, home, extend your family? How about education, career, hobbies? You can always get low interest loans to attend college. From my experience with 5 colleges in 5 years (the challenges of military moves), start with an associates degree in your local community college. Then, finish with the last 2 years with the local state college. You desire a life too.
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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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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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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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Take a moment & BREATHE!!!! Then, sit down, in a quiet place, well lit, to reflect & think. What do you like to do? What would make you want to JUMP out of bed. Why don't you find some work or start an on line business? You can research it, until you are satisfied with with work you want to do. There are so many sites just for this type of thing. You might just love expanding yourself away from the same ol' same ol'! No, wonder you are burnt out. Go take a nap!!
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Perhaps it is Best from the Rest to Talk to Mom and Get her Now into a Facility and Explaincto her WHY, No Lie. She will Fret over This, be Pissed, But tell her if you are Out of Commission, NO one, Hun, Is there to Help Her Out, She would need Mony, Honey, To Pay for Something you were able to DO BUT LESSS, YOU WERE THE BEST.
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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 2019
I think this is a great answer. Praying for all involved!
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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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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 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 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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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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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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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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