soakland
Member
- Joined
- Apr 24, 2016
- Messages
- 18
- Reason
- Learn about ALS
- Country
- US
- State
- FL
- City
- Cape Coral
My wife has Bulbar ALS, diagnosed since Oct. 2016. Some background prior to her diagnosis is necessary to get context:
My wife, myself, and our now 19 yo daughter moved from RI to FL to care for my 91 year old Dad in July 2013. We moved in with him. He was very demanding and passive-aggressive. He hated when we left the house for any length of time. H would sulk and put pressure on us to stay at home 24/7. My wife would cook daily for him. I just sat here, for the most part...while he paid the bills. My wife was Bipolar and was on disability so that was our income. I quit a FT job in RI to move down here. I did start a cleaning business here, so I worked occasional one or two times a week to earn some extra $$.
Then we had to go bankrupt because the house we sold in RI had a clause that I didn't see...that we would be responsible for the short-sale balance. So we went bankrupt in Mar-Apr 2016.
My wife had been having symptoms of slurred speech which we attributed to her bipolar meds....or GERD. What was to happen next (not even yet related to ALS0 was devastating.
My wife had a bipolar psychosis that lasted 6 mos. She insisted on divorcing me, and even called the police saying I abused her. She intended to fly to move in with a friend in RI...she was stopped in Atlanta airport and was arrested for assault on a police officer. Long story short, she had a psychosis which explained her actions. She was hospitalized in Atlanta, and treated for bipolar psychosis successfully. She was there for 6 weeks. Come to find out what happened: my wife was in denial and went into a psychosis. The hospital positively diagnosed her with Bulbar ALS. At that point I hired an elder care specialist to try to figure out what to do next. Figuring that my wife wanted nothing to do with me, I figured a facility was needed. While in Atlanta, my wife (her speech now almost unreadable) finally got a phone and called me and said she wanted to come home and deal with the ALS. I was a bit skeptical...but I paid $3K for medical transport and brought her home. Caring for a 95 year old father did not afford me the chance to go myself. Although my daughter flew there from RI to visit her while in hospital.
That was in November. We have gone twice to the ALS Clinic and am moving forward with treatment. She is declining but has a great attitude, and our marriage is back to normal (whatever that is).
So here I am...a caregiver for my 95 year old father, and now my wife. Both at the same time. Luckily my father only needs meals and bed making and stuff. But, going into ALS, we have been through the meat grinder. I worry about my mental health. I get angry, and feel no one understands my plight. I am a Lutheran Christian and have strong faith in God. But I am going into caregiving for ALS already burned out by 3 1/2 years of caregiving for my Dad.
So that is my ongoing story. My wife was told she had 6 mos (that was in October), but she may very well have longer. That is how ALS rolls. Her father and uncle both died of ALS, so it is the familial type.
Glad to be a part of this forum. I hope I can learn from all of you.
My wife, myself, and our now 19 yo daughter moved from RI to FL to care for my 91 year old Dad in July 2013. We moved in with him. He was very demanding and passive-aggressive. He hated when we left the house for any length of time. H would sulk and put pressure on us to stay at home 24/7. My wife would cook daily for him. I just sat here, for the most part...while he paid the bills. My wife was Bipolar and was on disability so that was our income. I quit a FT job in RI to move down here. I did start a cleaning business here, so I worked occasional one or two times a week to earn some extra $$.
Then we had to go bankrupt because the house we sold in RI had a clause that I didn't see...that we would be responsible for the short-sale balance. So we went bankrupt in Mar-Apr 2016.
My wife had been having symptoms of slurred speech which we attributed to her bipolar meds....or GERD. What was to happen next (not even yet related to ALS0 was devastating.
My wife had a bipolar psychosis that lasted 6 mos. She insisted on divorcing me, and even called the police saying I abused her. She intended to fly to move in with a friend in RI...she was stopped in Atlanta airport and was arrested for assault on a police officer. Long story short, she had a psychosis which explained her actions. She was hospitalized in Atlanta, and treated for bipolar psychosis successfully. She was there for 6 weeks. Come to find out what happened: my wife was in denial and went into a psychosis. The hospital positively diagnosed her with Bulbar ALS. At that point I hired an elder care specialist to try to figure out what to do next. Figuring that my wife wanted nothing to do with me, I figured a facility was needed. While in Atlanta, my wife (her speech now almost unreadable) finally got a phone and called me and said she wanted to come home and deal with the ALS. I was a bit skeptical...but I paid $3K for medical transport and brought her home. Caring for a 95 year old father did not afford me the chance to go myself. Although my daughter flew there from RI to visit her while in hospital.
That was in November. We have gone twice to the ALS Clinic and am moving forward with treatment. She is declining but has a great attitude, and our marriage is back to normal (whatever that is).
So here I am...a caregiver for my 95 year old father, and now my wife. Both at the same time. Luckily my father only needs meals and bed making and stuff. But, going into ALS, we have been through the meat grinder. I worry about my mental health. I get angry, and feel no one understands my plight. I am a Lutheran Christian and have strong faith in God. But I am going into caregiving for ALS already burned out by 3 1/2 years of caregiving for my Dad.
So that is my ongoing story. My wife was told she had 6 mos (that was in October), but she may very well have longer. That is how ALS rolls. Her father and uncle both died of ALS, so it is the familial type.
Glad to be a part of this forum. I hope I can learn from all of you.
