darney2
New member
- Joined
- Dec 6, 2006
- Messages
- 2
- Reason
- Loved one DX
- Country
- US
- State
- OK
- City
- Watonga
Hello,
My brother who is 44 years old, moved in with my husband and I in August of 2005. He has ALS. He was diagnosed in July of 2004. It started with a weakness in his right hand and continued from there. When he move in with us he could still walk, some, with a walker, and feed himself. God knew to give him a hard head, since he couldn't use his arms to stop his falls, he would fall and hit his head all of the time. Luckily, he never busted it open. lol Now, he has lost all use of his arms and most use of his legs. He can't turn over in bed. Which means we have to feed him and turn him and lift him out of bed. I had to quit my job to stay at home with him fulltime. It is starting to affect his voice. It is getting very weak and hard to understand him. We are working to get him a communication device to help him with that. He has a PEG tube. We had it put in, in June of this year. His doctor told him that his breathing was getting bad enough that if he didnt' do it within 2 weeks he would not be able to have it done. His volume output sitting up then was 50%, laying down, 30%. It definately has gotten worse since then. He does not want any type of help with it so we deal with it. He hates his feeding tube, but it has helped giving him medicine that he hates the taste of. We don't have to use it to eat yet. He does pretty good there. Thank God! He has had a very hard time accepting what is happening to him. He lives in the past most of the time. Which is hard on him and us. He thinks he can still do things, i.e. walk, stand on his own, etc. He hurts ALOT. He is one of the lucky ones, (unlucky really) who hurts all over. He takes some pretty powerful meds to help with that. We have hospice nurses who come 3 times a week. They are godsends. I don't know what we would do without them. An aide comes 3 times a week to give him baths, etc. It helps me alot there. When we spend to much time together we start taking bites out of each other, figuratively speaking! :evil: We now have it set up with hospice that he goes to the hospital once a month for 5 days. We call it a mini vacation for all of us. He gets a break away from us and us him. My husband is probably one of the greatest guys I know. There are not to many men who would let their wife's brother move in with them, let alone help take care of him. He is more patient with my brother than I am. lol He is wonderful. I really don't know what I would do without him.
I would love to talk to people who have ALS and people who have taken care of someone or are taking care of someone with ALS. I have read lots and lots regarding this awful disease but not enough to answer some of the many questions I have. Hope to hear from some of you soon.
My brother who is 44 years old, moved in with my husband and I in August of 2005. He has ALS. He was diagnosed in July of 2004. It started with a weakness in his right hand and continued from there. When he move in with us he could still walk, some, with a walker, and feed himself. God knew to give him a hard head, since he couldn't use his arms to stop his falls, he would fall and hit his head all of the time. Luckily, he never busted it open. lol Now, he has lost all use of his arms and most use of his legs. He can't turn over in bed. Which means we have to feed him and turn him and lift him out of bed. I had to quit my job to stay at home with him fulltime. It is starting to affect his voice. It is getting very weak and hard to understand him. We are working to get him a communication device to help him with that. He has a PEG tube. We had it put in, in June of this year. His doctor told him that his breathing was getting bad enough that if he didnt' do it within 2 weeks he would not be able to have it done. His volume output sitting up then was 50%, laying down, 30%. It definately has gotten worse since then. He does not want any type of help with it so we deal with it. He hates his feeding tube, but it has helped giving him medicine that he hates the taste of. We don't have to use it to eat yet. He does pretty good there. Thank God! He has had a very hard time accepting what is happening to him. He lives in the past most of the time. Which is hard on him and us. He thinks he can still do things, i.e. walk, stand on his own, etc. He hurts ALOT. He is one of the lucky ones, (unlucky really) who hurts all over. He takes some pretty powerful meds to help with that. We have hospice nurses who come 3 times a week. They are godsends. I don't know what we would do without them. An aide comes 3 times a week to give him baths, etc. It helps me alot there. When we spend to much time together we start taking bites out of each other, figuratively speaking! :evil: We now have it set up with hospice that he goes to the hospital once a month for 5 days. We call it a mini vacation for all of us. He gets a break away from us and us him. My husband is probably one of the greatest guys I know. There are not to many men who would let their wife's brother move in with them, let alone help take care of him. He is more patient with my brother than I am. lol He is wonderful. I really don't know what I would do without him.
I would love to talk to people who have ALS and people who have taken care of someone or are taking care of someone with ALS. I have read lots and lots regarding this awful disease but not enough to answer some of the many questions I have. Hope to hear from some of you soon.