JLM1911
New member
- Joined
- Aug 6, 2016
- Messages
- 4
- Reason
- Loved one DX
- Country
- US
- State
- West Coast
- City
- Anon
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.
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.