How to care for mom when dad does not help

Posted by worried99 @worried99, 19 hours ago

Hi. I am new here but could really use some advice. I feel like I have a unique situation and don't know who to ask for an outside opinion or resources.

My mom, who is in her late 50s, is unable to take care of herself following decades as an alcoholic. About 1.5 years ago my sibling and I were increasingly concerned for her health. We went to her house which is hours away from us and forced her against her will to go to the emergency room. Even when she was very ill with brain inflammation and malnutrition and could only see out of one eye, she claimed she was fine and did not want help. She has many different doctors appointments every week and does not have a good understanding of current events or why we are making her go to the doctor. For the past 1.5 years she has been taken care of my myself and my siblings. She has brain damage and symptoms related to Wernicke Korsakoff syndrome, and will likely not improve significantly. She has also developed a fear of falling down, which her psychiatrist says is somatoform disorder, and as such she truly believes she cannot walk. She had many other health issues related to her disinterest in eating, which are mostly resolved, but her memory doctor and neurologist have been clear that she should never live alone or drive. She has no interest in eating bathing or doing much of anything and has short term memory problems.

I am in my mid 20's with two siblings in the same age range. None of us have a lot of money at all and we do not have power of attorney or anything over our mom. Our mom and dad are still married, though they lived apart for 5+ years prior to our mom's inability to care for herself. Once we got her admitted to the hospital 1.5 years ago and she was well enough to come home, she moved into my dad's house and my sibling moved back in as well to help care for her, as none of us have houses of our own. My mom and dad don't get along super well, which my mom does not really remember. They still have shared bank accounts and health insurance, and she continues to stay at his house, but other than that he does nothing at all to care for or support her, and says he wants her to get back on her feet so she can move out and live on her own again, which we have told him the doctors have said should not be allowed to happen. I think he initially let her move in incorrectly assuming she would make a miraculous recovery and move out within the year.

So my question is, what should we do? My siblings and I are exhausted and financially strained trying to make our mom eat and shower and use the bathroom and go to all her doctor's appointments. We love and care for her, but it is difficult to have to care for someone 24/7 who growing up was very abusive, and now just wants to do nothing all day, and who is still unable to walk and continues to lose weight. She has not had a job in probably 15 years, so I don't think she could get social security or any sort of disability assistance, and she is married to our dad who works, so I don't think she could get medicaid/medicare assistance. My dad does not like to talk about this and when we have asked him to help financially with getting a nurse or additional physical therapy that insurance does not cover, he says no, or claims he will help and we still end up paying.

Myself and my siblings cannot afford to hire someone to come daily to help out or to have her live in an assisted facility. My siblings are especially upset because they feel trapped living with her and caring for her and having no money with no foreseeable way out. I think we all feel dejected like we never got a chance to start our own lives and now may have to spend 30+ years taking almost constant care of someone who needs, but does not want, our help. Also, my siblings pay rent and buy groceries while living at our dad's house, as well as their own bills, so they aren't saving money that way.

What would you do in this type of situation? Have you had this type of experience? Do you know of any resources or people to talk to for help on this? I tried seeing if a counselor or someone could sit with my siblings and I as a sort or expert and tell us what to do but have not found anyone with experience in this topic or willingness to give us advice. I am unsure how much to try and take charge of this situation, or how long we should wait before we are forced to take over. I am very confused about how my parents' finances and marriage and insurance play a role in this and what will ultimately be best for everyone.

Sorry for rambling, I am just very eager to hear any personal advice or recommendations etc.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@worried99 I should welcome you to Mayo Clinic Connect! You’ve come to the right place and I think all the members will be anxious to help you! I cannot believe that this has fallen on you and your siblings! Wow! And I’ll bet that you are doing a great job, too!
Can I make a suggestion? The 3 of you need to sit down and come to some conclusions about the situation. Ask yourselves “where will we be 1 yr, 5 yrs, 10 years from now”? Do we have the financial backing to do this? Where would Mom be safest? And more questions like this. And if you come to the conclusion that none of you can take care of your mother, you’ll need to investigate some options. You can contact (your town) Area Agency on Aging. They know of all the community resources. Do you think you could do this? Let me know what you learn.

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