Pandora
Distinguished member
- Joined
- Apr 30, 2011
- Messages
- 130
- Reason
- Lost a loved one
- Diagnosis
- 01/2011
- Country
- US
- State
- Texas
- City
- Crowley
Hi I'm new to the forum. My name is Amanda and I am caretaker to my wonderful Husband of 7 years, Bran.
My husband was having a few issues with some back pain and he started to have a limp when he walked. I was worried but thought it was just something he pulled. A few weeks went by and he seemed to be getting worse, I got him a cane (more of a gag then anything else) well, he used it all the time and it was helping. Then came the foot dragging a bit and the falling. He fell 4 times in a month. I was really getting worried about him and he was saying no no, everything was fine. Well in December we went out to eat and when we got back home, he fell. Like a tree in the woods. He toppled over and I did everything I could to get him up. Put him right back in the car and off to the hospital we went. After hours of waiting we got back to see a doctor. Took forever and they wanted to send us home, well i got loud and I will admit a tad crazy. They ended up admitting him. Test after Test, and 4 days later we saw a Neurologist. They "tested" and sent us home. A month later he called us in for a visit and to go over the test. Well he walked in and sat down and said you have ALS, and then walked out leaving us with a nurse. Talk about a awful bedside. We were given a Rilutek pamphlet and a script for it, and that was it.
I had never heard of ALS so I wante dto know what we were facing. I googled, I yahoo'ed, I WebMD'ed. I was floored. I was afraid, I was PISSED, I was sad. Having no insurance, and him out of work, I didn't know where to turn. I called the county hospital and get on their "plan". Ok well it helped and we had access to doctors, or so I thought. We saw a doctor and was able to get a few things he needed but not any of the scripts (in my area Rilutek is over $1800) But we were starting a file and getting some information. We were refered to the same Neurologist he saw in the hospital and we went back to see him. He wasn't any more help then the first time. Ok things had to change. I applied for his disability and talked to the loacl ALS chapter. North Texas ALS. They were so awesome, they gave us a wheelchair for him to use, a walker, a potty chair, and a ton of information.
ok now we are all up to speed. We just got the award letter, so it will be something coming in. Medicare insurance... thats going to help. But I am so tired, I am overwhelmed and over tired. We will be able to start seeing good doctors in May. and we can get the drugs he needs.
We have had to move in with his father and brother. They are family and you would think that they would be a bigger help. But they are not. His father only sees $$$$$ (what a joke) and his brother is more invovled in his own life then doing anything to help his brother. I thought that moving in with them would help us out. Its been nothing but more work. Bran has progressed so fast that he is barely walking, he needs me for his every day needs now. So I can no longer work out side the home. He can still talk but that is going very fast. I now have to cook for 4 people instead of 2. Laundry for 4, two cats and a dog. Baths, meals, massages, getting him up and getting him back into bed, I feel like I'm up to my eyeballs in pee and poo.
I am only 32 and he is 34. We are so young, and we had such a great life. I feel like he is being stolen from me. There is nothing I want more then my husband back. I don't know if I can do it. I sat in teh car the other day and looked out and fought the urge to run. I wanted to drive, go as far as I had the gas to go. I love him so much, and I miss him already.
I cry every night, when he is sleeping, just to cope. I don't want him to know that I'm feeling this way. He feels so bad about how our life has changed. There hasn't been any intimacy between us since December, I'm not sure if it's him or me. I try not to see him in a clincal way, but it's hard.
Any advice or tips.. or anything is welcome. I'm at the end of my rope.
Thanks... feels better just to get all of that out.
My husband was having a few issues with some back pain and he started to have a limp when he walked. I was worried but thought it was just something he pulled. A few weeks went by and he seemed to be getting worse, I got him a cane (more of a gag then anything else) well, he used it all the time and it was helping. Then came the foot dragging a bit and the falling. He fell 4 times in a month. I was really getting worried about him and he was saying no no, everything was fine. Well in December we went out to eat and when we got back home, he fell. Like a tree in the woods. He toppled over and I did everything I could to get him up. Put him right back in the car and off to the hospital we went. After hours of waiting we got back to see a doctor. Took forever and they wanted to send us home, well i got loud and I will admit a tad crazy. They ended up admitting him. Test after Test, and 4 days later we saw a Neurologist. They "tested" and sent us home. A month later he called us in for a visit and to go over the test. Well he walked in and sat down and said you have ALS, and then walked out leaving us with a nurse. Talk about a awful bedside. We were given a Rilutek pamphlet and a script for it, and that was it.
I had never heard of ALS so I wante dto know what we were facing. I googled, I yahoo'ed, I WebMD'ed. I was floored. I was afraid, I was PISSED, I was sad. Having no insurance, and him out of work, I didn't know where to turn. I called the county hospital and get on their "plan". Ok well it helped and we had access to doctors, or so I thought. We saw a doctor and was able to get a few things he needed but not any of the scripts (in my area Rilutek is over $1800) But we were starting a file and getting some information. We were refered to the same Neurologist he saw in the hospital and we went back to see him. He wasn't any more help then the first time. Ok things had to change. I applied for his disability and talked to the loacl ALS chapter. North Texas ALS. They were so awesome, they gave us a wheelchair for him to use, a walker, a potty chair, and a ton of information.
ok now we are all up to speed. We just got the award letter, so it will be something coming in. Medicare insurance... thats going to help. But I am so tired, I am overwhelmed and over tired. We will be able to start seeing good doctors in May. and we can get the drugs he needs.
We have had to move in with his father and brother. They are family and you would think that they would be a bigger help. But they are not. His father only sees $$$$$ (what a joke) and his brother is more invovled in his own life then doing anything to help his brother. I thought that moving in with them would help us out. Its been nothing but more work. Bran has progressed so fast that he is barely walking, he needs me for his every day needs now. So I can no longer work out side the home. He can still talk but that is going very fast. I now have to cook for 4 people instead of 2. Laundry for 4, two cats and a dog. Baths, meals, massages, getting him up and getting him back into bed, I feel like I'm up to my eyeballs in pee and poo.
I am only 32 and he is 34. We are so young, and we had such a great life. I feel like he is being stolen from me. There is nothing I want more then my husband back. I don't know if I can do it. I sat in teh car the other day and looked out and fought the urge to run. I wanted to drive, go as far as I had the gas to go. I love him so much, and I miss him already.
I cry every night, when he is sleeping, just to cope. I don't want him to know that I'm feeling this way. He feels so bad about how our life has changed. There hasn't been any intimacy between us since December, I'm not sure if it's him or me. I try not to see him in a clincal way, but it's hard.
Any advice or tips.. or anything is welcome. I'm at the end of my rope.
Thanks... feels better just to get all of that out.