aryakangler
Member
- Joined
- Aug 29, 2015
- Messages
- 19
- Reason
- Lost a loved one
- Country
- US
- State
- arkansas
- City
- Privateville
Hello.
My mother woke up with speech issues in March 2014. She various doctors for a few months, and eventually was given a stroke diagnosis. By November her speech was so limited, I couldn't understand her on the phone anymore, and requested she move closer to me. At the beginning of March she arrived, and by May had purchased a home. With the stroke diagnosis, she was going to PT, OT, etc,. She kept getting worse, and I had her see a neurologist in June. On the initial visit he said this was not a stroke, and informed us of ALS. She had 2 MRIs and a EMG and at the beginning of August the neurologist said this was ALS, and not a stroke.
She has become extremely depressed. In February of this year she was still driving, and now she can't take a step. We use a transport chair to get from the bed to the table, from the table to the bathroom, and then back to bed. Tonight marked the first time she said she just wanted to die. I don't know what to do. I've tried to do everything I can to make her happy, but nothing works. She wants to get out, but doesn't have the energy. Other than a nurse once a week for 2 hours, I am the only one providing care. I feel terrible that I can't do enough. I am a part time college student, full time employee, husband, and father. I haven't slept in my own house for over a month. I wake up, get her to the bathroom, feed her, then get her back in bed. Rush home to shower, say hi to my wife and child, and sometimes do a thing or two around the house. Within 2 hours I'm heading back to her house for another bathroom, food, bed session. This basically continues everyday. I've told my boss I can't come to work anymore.
She receives SSDI, and I have submitted the paperwork for Medicare. Currently she has private insurance. Her budget has no room for a nurse anymore than once a week, for 2 hours. Even then, she can't communicate with them so I have to help translate. I've had the local ALS chapter out to visit her, and they have been of some assistance. I realized I haven't even hung out with her in the last month. I just don't have the time.
Any suggestions?
My mother woke up with speech issues in March 2014. She various doctors for a few months, and eventually was given a stroke diagnosis. By November her speech was so limited, I couldn't understand her on the phone anymore, and requested she move closer to me. At the beginning of March she arrived, and by May had purchased a home. With the stroke diagnosis, she was going to PT, OT, etc,. She kept getting worse, and I had her see a neurologist in June. On the initial visit he said this was not a stroke, and informed us of ALS. She had 2 MRIs and a EMG and at the beginning of August the neurologist said this was ALS, and not a stroke.
She has become extremely depressed. In February of this year she was still driving, and now she can't take a step. We use a transport chair to get from the bed to the table, from the table to the bathroom, and then back to bed. Tonight marked the first time she said she just wanted to die. I don't know what to do. I've tried to do everything I can to make her happy, but nothing works. She wants to get out, but doesn't have the energy. Other than a nurse once a week for 2 hours, I am the only one providing care. I feel terrible that I can't do enough. I am a part time college student, full time employee, husband, and father. I haven't slept in my own house for over a month. I wake up, get her to the bathroom, feed her, then get her back in bed. Rush home to shower, say hi to my wife and child, and sometimes do a thing or two around the house. Within 2 hours I'm heading back to her house for another bathroom, food, bed session. This basically continues everyday. I've told my boss I can't come to work anymore.
She receives SSDI, and I have submitted the paperwork for Medicare. Currently she has private insurance. Her budget has no room for a nurse anymore than once a week, for 2 hours. Even then, she can't communicate with them so I have to help translate. I've had the local ALS chapter out to visit her, and they have been of some assistance. I realized I haven't even hung out with her in the last month. I just don't have the time.
Any suggestions?