How to care for mom when dad does not help

Posted by worried99 @worried99, 3 days 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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I'm so sorry for all you're going through. Connecting with this site will help you a lot, but you have a lot to contend with. You are very young to have so much responsibility thrust upon you. I hope you can find some help, perhaps through social services. I wonder if your mother would qualify for disability support.

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@worried99 First I want to welcome you to Mayo Clinic Connect where you can receive support. Second I’d like to share that the situation with my parents was somewhat similar to yours although I was living across the country from them at the time I was trying to figure all of this out. My parents were still living together, my mother had chronic health problems, and my father did a little to help. In retrospect I believe my father looked at my mother as a burden which was and is heartbreaking to me. Did my mother choose to live the last 15 years of her with chronic disease? Of course not. No one chooses that. My mother was an alcoholic. Some of her health problems were due to long standing alcoholic use and while she did not develop dementia her frailty and physical limitations made it impossible for her to care for herself. My brother lived close by to our parents but with his work, lack of money, and a wife and toddler it wasn’t possible for him to jump in and set his life aside for our parents.

Your description of what’s happening within your family is something that can and should be discussed with all of the siblings who are involved. This is what social workers do really well. I suggest you get in touch with your local Alzheimer’s Association office even though I realize your mother was not diagnosed with Alzheimer’s disease. She does have dementia from what you’ve described and the Alzheimer’s Association is for that disease and all other dementias. This website will help direct you to a regional or local office.

Alzheimer’s Association:

https://www.alz.org/

Since your mother’s health care insurance is still provided through your dad/her husband, she may have health insurance that covers visits with a social worker through your local hospital. You will want to find a social worker who specializes in seniors and especially in dementia.

If you would like to let me know the region or area in which your mother is located I may be able to direct you.

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What I'm about to say may not be popular, but it's so true. You stated your mom, due to her alcoholism, ruined your life growing up. Adult children of alcoholics often put the alcoholic parent on an undeserved pedestal. It appears she and your dad are attempting to ruin your adult lives as well. You have looked into multiple avenues which were dead ends. It is time for all of you to distance yourselves from your parents, live your adult lives, have fun, make friends get good jobs and not be sucked into this dysfunctional family situation. Dad is aiding the situation and all of you adult children are enablers. Try Al Anon where other people in the same situation will be in the group.
Sorry to be so blunt. Good luck.
As the saying goes, "You can lead a horse to water, but can't make it drink "

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I need advice. My husband has Alzheimer's but doesn't admit it or realize just how compromised he is. He's highly functional--he can drive to familiar places, unload the dishwasher, make the bed, do the laundry, and look after our money. And there's my dilemma. My husband is retired, as am I. Our retirement accounts are with the same company but his is much larger than mine. I'm listed as his beneficiary but I want to have access to his account, which means submitting my power of attorney. I can get a letter from the neurologist and have our lawyer send the POA to the retirement plan but I don't know how to bring this up with my husband. Yesterday I used his password to get into his account and talked with a representative who told me it's easy to get my name on the account, but I don't know how to bring this up with my husband. Am I too sensitive? Too chicken? I hate confrontation and I fear that as things progress I'll have to be more directive. I find that very difficult. I want to meet with an agent and include my adult children in the ZOOM meeting I've scheduled for September. Should I include my husband or do this without him? I want to do what's ethical and also compassionate.

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@pamela78 This is a very difficult situation. I went through a similar situation with my father although he did not have a large estate. I wanted to help my father keep track of what savings he did have in his investments but he did not perceive my reasoning in that way. He was angry and said he thought I wanted to steal his money. In those days my father did not have or did not use any online access.

I’m not an attorney or a medical provider. I am going to share what attorneys have told me and I suggest you should get legal advice. From what you’ve shared you do not have guardianship or financial POA for your husband. So in a legal sense I believe you cannot work around your husband and go into his financial records without his consent. You did not share why you’d like to have access to your husband account(s). This is most important. You can ask your/his financial agent for your investments about what safeguards can be put in place if you are worried that your husband will transfer or take out large sums of money. Are you worried that your husband could fall for a scam?

Our investment advisor has shared with us how they keep up with the personal lives of their clients in an effort to prevent financial calamities. In our case this is in a small town and in a small bank where it’s very possible to do this. Our investment advisor also shared the safeguard they have in place.

Should you bring this up with your husband? I don’t know as he denies the diagnosis of Alzheimer’s disease and this is unfortunately one of the symptoms of Alzheimer's disease. The denial of the illness. Will your husband become angry if you bring this up in a direct fashion? What do you perceive as the risk other than your own avoidance of confrontation should you talk directly with your husband about your worries and concerns?

If you can get this out in the open before the September meeting then by all means include your husband in the Zoom meeting. If you cannot talk with your husband before the meeting then I suggest you talk with your agent and your adult children about how to include your husband.

One last idea. Do you have a mental health therapist? If so, then this is a topic to discuss with your therapist.

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@naturegirl5

@pamela78 This is a very difficult situation. I went through a similar situation with my father although he did not have a large estate. I wanted to help my father keep track of what savings he did have in his investments but he did not perceive my reasoning in that way. He was angry and said he thought I wanted to steal his money. In those days my father did not have or did not use any online access.

I’m not an attorney or a medical provider. I am going to share what attorneys have told me and I suggest you should get legal advice. From what you’ve shared you do not have guardianship or financial POA for your husband. So in a legal sense I believe you cannot work around your husband and go into his financial records without his consent. You did not share why you’d like to have access to your husband account(s). This is most important. You can ask your/his financial agent for your investments about what safeguards can be put in place if you are worried that your husband will transfer or take out large sums of money. Are you worried that your husband could fall for a scam?

Our investment advisor has shared with us how they keep up with the personal lives of their clients in an effort to prevent financial calamities. In our case this is in a small town and in a small bank where it’s very possible to do this. Our investment advisor also shared the safeguard they have in place.

Should you bring this up with your husband? I don’t know as he denies the diagnosis of Alzheimer’s disease and this is unfortunately one of the symptoms of Alzheimer's disease. The denial of the illness. Will your husband become angry if you bring this up in a direct fashion? What do you perceive as the risk other than your own avoidance of confrontation should you talk directly with your husband about your worries and concerns?

If you can get this out in the open before the September meeting then by all means include your husband in the Zoom meeting. If you cannot talk with your husband before the meeting then I suggest you talk with your agent and your adult children about how to include your husband.

One last idea. Do you have a mental health therapist? If so, then this is a topic to discuss with your therapist.

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I don't worry about my husband falling for a scam, at least not at this point, but I know I can't predict the future. My name is on all our bank accounts and I'm my husband's beneficiary, so I think things are fine. I just get nervous and when I got an email from our retirement plan about involving adult kids, I thought it sounded like a good idea. But our circumstances are pretty simple and straightforward. Our lawyer assures me that all is well. I just had a little fright there for a moment. I haven't made up my mind about the meeting yet, but I have time to think about it. Thank you for your input. It helps to get others' opinions sometimes.

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