I hope this is the right place to ask this, and I really appreciate anyone who is taking the time to read this because I am completely overwhelmed. I also apologize for the emotionalness of this post. I am 30 years old. My mother is young at only 54, but she's the most stubborn person I have ever met. When she was younger, she was diagnosed with Addison's disease and Hashimoto's, and for as long as I can remember, she has refused to take her medicine, which can be very fatal and has landed her in the hospital more than a few times... For a long time, she was independent and strong, and lived her own life. Flashforward to two years ago, when she started developed knee pain, as well as bladder issues. It hurt too much for her to walk, so she would sit on her couch and just urinate where she sat, and not care. She never went to the doctor for it. Now, her bladder will not work at all. She does not use diapers or a catheter, and her home smells so bad, no one can go inside. She lives in a camper and refused to walk more than minimally for those two years, so now her muscles are atrophied. She can no longer stand up on her own and has to sit in a wheelchair. She refuses to wear diapers - it took a year and a half to get her to use pee pads, but even those can't do much. She won't brush her hair – for months at a time. Not even joking. When her husband says he will help her shower, she refuses. When he asks her to take her meds, she gets very angry and turns emotionally abusive. It's hurtful and exhausting. She cannot work anymore. She has zero savings, zero retirement, and zero income, and won't apply for disability. I have begged her to take her meds. She won't. I have begged her to make doctor's appointments. She won't. I made doctor's appointments for her, and she'll find a reason not to go. Then, she'll turn around and demand appointments to be made for her again, or she won't go. Her last two doctors fired her because she wouldn't follow their instructions and kept not going to appointments. She refuses to face the truth – she wants to go see a knee doctor, even though every doctor she sees tells her the same thing: it's because of her diseases and they need to be treated. But she doesn't like that answer, so she wants others. She is in severe denial and no one can seem to get her to face the truth and I am at a loss. I live three hours away and I cannot drop everything to take care of her like I could if I lived close by. I am so scared she is going to die. She is so young and yet she refuses to take care of herself. She has severe health issues, and yet she is still sound of mind. Yet... It is now in danger zone. She cannot walk. I found out today that she is getting bed sores now (hence the emotional rambles), and I worry about her sitting in her own urine constantly, yet she doesn't want to recognize how dangerous that is. I don't want her to get sepsis. I am completely overwhelmed and I don't know where to start. I didn't think I'd have to worry about this for a few decades, and I'm at a loss. I am watching her die and she is too stubborn to get help. I don't know what legal rights I have to make her get help. Her husband is about to leave her because he can't handle this anymore, or the way she treats him (and I can't blame him), and I'm scared she's going to have to live with me. I don't think my marriage is going to survive this, not only because of the physical demands of being a caregiver but because of the emotionally abusive behavior on her part. But she has no other family, no other friends. No savings to afford health care. It feels like there is no other option. I don't know what to do. Can I call APS if she isn't elderly? Do I call and do a wellness check so they can condemn her house? Because without a doubt, it is a biohazard. But what happens after? Can they get her help? But she doesn't have money? And I am a minimum wager. I can't afford outside help when I can barely support myself. I live on a third-floor apartment – how am I going to get her up and down these stairs to live with me? She cannot navigate stairs, let alone three flights. How can I get her to appointments? How can I convince her to go to appointments when she is a legal adult? Her cognitive abilities are fine, yet she is obviously very sick. I need so much help and I don't know where to begin to look. I feel so incredibly guilty for being upset and frustrated when I know she didn't ask for these health issues. She is my mother. In spite of everything, I love her so much and my heart is breaking and I don't know what to do. Does anyone have an resources or advice or just... any sort of words of wisdom for this situation? Anything would be very much appreciated. Thank you!
So start with one phone call, explain the situation, and ask simply for any advice and information they can give you.
Your mother's husband having heroically stood by her so long, he is the primary caregiver, not you. It is very important for your sanity that you do not become her primary caregiver. Should the husband surrender and leave - which I say without judging him because, well, for heaven's sake - then your mother must be treated as an independent adult living alone, and entitled to as much support from healthcare and social care agencies as anyone else.
Another resource that might be a possibility: have you looked into support groups for the relevant autoimmune disorders? I'm guessing your mother wouldn't join one for all the tea in China, but they might have good ideas for you and her husband.
I must say. It is a tribute to your mother's underlying qualities and character that her husband and you still love her. So in spite of the incredibly frustrating, and apparently self-destructive, behaviours you describe, there must be a truly remarkable woman in there somewhere. I'd love to hear more about her.
Hugs to you, you are doing a grand job in difficult circumstances of your own. Lose the guilt, it's not helpful to you or to your mother.
She is a remarkable woman. Honestly, she is the strongest woman I know, and that's why her personality change has been so hard to come to terms with. But of course, she certainly hasn't lost that stubborn streak, hence the situation. And you are right - it does make sense that her mental health would suffer along with the physical. It's hard to remember that on the bad, frustrating days. But I can't let myself forget that.
I am not her primary caregiver, but I do think her husband has one foot out the door (I cannot blame him either - he has the patience of a saint, but this has been so hard for everyone, especially him), so I feel as if I am about to be. Which is why I am trying to find out my options, and how I can get her help, even if it's against all of her wishes and even if she ends up hating me for it. I would rather have her living and hating me, than dead.
Thank you for the reassurance about the APS! Every brochure I found for my state said 60+, which didn't seem right to me, so knowing that they'll listen and give advice if I call, even if she's younger than the age listed... Queue a huge sigh of relief. I think the hardest part about this is not knowing what to do or what I can do, and feeling like I am running in circles. But having the first inklings of a plan - or at least, where to call to hopefully get information to begin that plan... It helps.
Thank you so much, Countrymouse. *hugs*
I'm glad you recognize that your mom can't live with you, that it would damage your life and your marriage. And you're right, it would.
I know your mom didn't ask for these illnesses but she hasn't done a whole lot to take care of herself either. I too have to wonder about mental illness. I don't know of anyone who would voluntarily sit in their own waste long enough and often enough to acquire bed sores. I think your mom should be evaluated for mental illness.
And of course it breaks your heart. That's your mom.
Calling APS is a good first step. And you have nothing to feel guilty for at all. Not one little thing. You're a loving and concerned daughter who wants her mom to be healthy and to get the medical care she needs.
You've gotten some very good answers here. I just want to touch on a couple of points.
Your mother is not in her right mind. No mentally healthy adult would willingly live in the toxic environment she has created. And no woman in her right mind would put her husband and daughter in the situation you are in. It is against all natural instincts. There is something broken in your mom. I'd say this is more than stubbornness. She is not fully in control of her behavior.
About you being the only family she has: Yes, and I hope you will do your best for her in love. But "best" in this case would NOT be you becoming her primary caregiver. Her advocate, yes. Hands-on care? No way!! Her needs are beyond what an untrained person could provide in a private home.
Calling APS seems like a good first step.