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.
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.
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.
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.
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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