Not open for further replies.


New member
Aug 6, 2016
Loved one DX
West Coast
Hello everyone,

My wife and I have used this forum as a place to gather information and try to prepare as best we could to help my wife's mother. Roughly a year ago she was diagnosed with ALS and it has been quite aggressive over the last 6 months. At the start, we had done everything we could to best prepare and gather things that would be needed throughout all of this. Our situation we are dealing with as of today requires a bit of backstory and it is in our hope that everyone may have some suggestions on how to proceed from here. I apologize if my story here is slightly broken as the last year has been so very difficult, it is hard to outline this properly. There are so many factors at work here I will do my best to outline them all.

My wife and I have tried our best from the start to help get her all she has needed prior to needing it as well as getting documents in order, caregivers, etc. to the best of our ability and within our power. We also live out of state so we try to balance keeping our own lives in balance with work and our own mental health while trying to get her the care she needs. Our mother lives at home still with her two sons, one in his late twenties and one in his early thirties. They both take advantage of her financially to a sickening degree. The eldest is mentally abusive to her and has caused multiple conflicts to arise and has refused to work for nearly 5 years. He faults her with her inability to function any longer on her and says she should be able to feed herself and take herself to the restroom because she is a “grown woman”. The younger of the two tries to help as best he can but has fallen into a deep depression given his living situation and watching the progression of the disease.

After being diagnosed, my mother-in-law quickly sought out local groups for support. This was a blessing and a curse. She had already needed the assistance of a cane in a very short period of time so her mobility had been quickly effected (this was over 8 months ago). At one of her support groups she sought comfort of a man whom she had met at one of these groups that tried to take advantage of her financially and harmed her physically. After getting protection orders and such he disappeared into the wind. Moving forward another person came into the picture months later. She had been recently divorced at the start of her being diagnosed and was in search of comfort. Well, the second person also was there to take advantage of her. He did everything he could to take advantage of her financially and insert himself into various aspects of her life and made odd requests. Wanted a domestic partnership, a living will, wanted to be paid for caring for her. After multiple conflicts this finally ended as well, but he is still in contact with her after being removed from all personal documents.

During this relationship and part of the timeline, she had progressed to being wheelchair bound and having a feeding tube. No longer being able to speak without a text to speech device. She has multiple caregivers which come roughly three times a day. Morning, afternoon, and night. Due to the brothers’ incompetency, she receives little care when her nurses or caregivers are not there. There are almost weekly hospital visits, conflicts from the brothers, worsening health conditions, and we are feeling overwhelmed.
Right now, we are met with resistance on trying to get her more assistance. Whether that be in the form of 24-hour care or moving to a care facility. We are afraid that if she stays at home she will be injured or worse without proper care. We don’t know what to do from here. We are a young couple and are reaching out for lifelines or information that we may be able to reach out to for more assistance.

Thank you all for taking the time to read.
I'm very sorry to hear all your MIL is going through. How far away are you from her? Does she live in Nevada or somewhere else?

It is impossible to control greedy people. Since my diagnosis, I could have been married two or three times to different men looking to reap the benefits of my hard work.....and I'm very far from rich.

Your wife must be so scared for her mom. Is there any way that you can move her mother closer to you so you can oversee her care? It sounds like the two brothers are more of a problem than a solution. It is hard to help from a distance and I sense you understand that and are looking for change. If it were my mom, I'd get her out of that living situation.

What does your wife think should be done?
Thank you for the reply Kim.

Were in California, so roughly 500 miles. We would love to have her closer, but she wants to be at home. That and I don't know if its financially viable. She is such a strong willed and intelligent women and both of us look up to her. Its hard to see all of this happening. My wife would also like to see her move somewhere that can get her the medical assistance she needs but also afford the freedom she still wants to have. Were concerned that social workers may have to get involved, but that seems to be out of our control.
If it were my mom, I would want her out of that situation ASAP. Family does not always react and/or respond in the way you would hope. They do sound like they are doing more harm than good.

Has your mother-in-law spoken to you about the situation? What are her wishes?
Thanks for the reply Jrzygrl.

Its hard to say as it seems her mental capacities have started to slip to a certain degree. When things are bad, its really bad. She gets into a very dark place and expresses her needs for proper care and living conditions. But then also fights the idea of going somewhere that can help with the level of care she wants. Other times, she is happy where she is at, but is open to the idea of going somewhere else. It has gotten so bad at times that we are fearful that she may purposely injure herself as she feels like she is a burden on everyone, but still fights the idea of going to a care facility.

Ultimately we just want what is best for her and makes her happy.
She needs to be safe and protected. I suspect that if you found a viable living situation close to you and said this is what is going to happen she would be relieved even if she initially objected.

How terrifying to be losing your physical powers and apparently mental ones and to know that you have been taken advantage of, to be abused by your child all the time knowing it will get worse.

It is not easy to take action and you are the in law but I hope your wife, with your help, can step up. Fighting her brothers will be hard
I agree with Nikki, this is one of those situations where autonomy cannot be fully respected, because it really does not exist; her wishes cannot be fully expressed in the setting of abuse, neglect and intimidation. She is likely malnourished and dehydrated at least part of the time. She loves her sons and likely wants to believe they are better people than they evidently are.

I would make contact with a senior care advocate in your area who can advise, given her/your finances, what options there might be for her moving closer to you, even on a "trial basis." I would also consult an attorney (family or elder care law -- in most cities there is someone who works on a sliding scale -- ask the Bar Association or Google) about ensuring that her sons can be detached from any forthcoming decisions, if they are named in any current documents in force.

This is a blunt message. It is much blunter than I would normally write. The reason it is blunt is because I think you need to take immediate steps to protect your mother in law (physically, emotionally, and financially).

You state that your mother is intelligent and strong willed.

Yet, your story paints a very different picture. No intelligent person would allow themselves to be taken advantage of the way she has.

A strong willed person would have escorted the children out of the house at a much earlier age, as, in my opinion, that would have been in their best interest. Even though that would have been emotionally hard to do, a strong-willed person would have done it.

My reason for pointing this out is that if you can accept she is not behaving as a strong-willed, intelligent person, you may be better able to make the changes necessary to improve her situation.

From what you have described, her situation needs a major change ASAP.

No person, and especially no disabled person, should be subjected to abuse (whether it is emotional or physical).

She has also demonstrated an inability to keep her finances away from those that would abscond with them. You mentioned that one of the suitors managed to get on some paperwork.

I am concerned that she may be showing signs of failing executive function, which could indicate the onset of FTD.

If it was my mother, I would.

1. Immediate change the living situation
2. Consider a protective order against the abusive child
3. Establish a POA over her financial affairs (if you believe she is no longer competent to handle those).

It appears this is the kind of situation that will only get worse as her condition deteriorates. If you do not take action now, you will be faced with taking much more difficult action in the future (perhaps the near future).

What will you do if she falls and injures herself to a degree she can no longer live at home?
What will you do if her living situation deteriorates to the point that it is physically harmful to her?
What will you do if some other person wanders into her life and is successful in financially damaging her?

Take action now to prevent the potential for these very difficult situations.

Thank you Steve. Honestly, blunt is best in this case.

I agree with you completely. Also it may be necessary to clarify, that the strong willed and intelligent comment is more of a past tense thing. That degraded with the disease so you are absolutely correct.

To your last statements, that is what we are trying to figure out. We are met with resistance in most cases and are not sure really where to turn. Do we turn to the doctors and caregivers, the state, social work?

It seems like we have attempted to promote movement to better care through our means and it has been refused.
Who refused? MIL or someone else? What idea was refused?

Is there a current POA? If so who is it? What will the sons do if you intervene aggressively?

How much documentation do you have of financial and other abuse and neglect?

Do you have a vision of what you think best if everyone cooperated?

The doctors and caregivers might be helpful as witnesses but I don't think they are going to be the ones to help solve though if she is incompetent and needs guardianship the doctor is involved in paperwork.

Does she have a social worker?

You could look into guardianship if your wife is not POA. There is risk that someone else might be chosen- a son or a paid guardian.

Adult protective services is mandated to investigate reports of abuse and neglect. Don't do that lightly as it is easy to start hard to stop.

It really depends a lot on who has POA and how hard they are going to fight what is right.

You can probably get things done better if you go there in person. Steve is right. Action needs to be taken.
We are going through this with my mother who has dementia and is a hoarder. She was about to give all her savings to my brother who is basically a con artist and nut job. We had to hire an elder attorney (elder services can recommend someone) and file a petition with the court requesting conservatorship and guardianship. The court will assign a social worker to make an objective assessment and recommendation. My sister is in Boston, and my mother is here but the judge granted the petition. Once that is done you should be able to sell or rent the house and move her to an assisted living place. The brothers will need to find their own way in the world, which they would need to do anyway. Mom needs her resources for her care.
Not open for further replies.