mrvaughan
Distinguished member
- Joined
- Nov 9, 2013
- Messages
- 101
- Diagnosis
- 05/2000
- Country
- US
- State
- MI
- City
- Grand Rapids
Hello everyone.,
I hope that you have had good holidays so far. This is a very blessed time of year, but also a hectic time.
Now for my story. Hopefully someone might have advice that I can use, or maybe just putting this down in writing helps me to not feel so overwhelmed.
I am the wife of a PALS, and while it is undiagnosed, he also either has FTD or a mania (that was suggested by our neurologist) brought on by being on the ventilator for almost 6 years. He has been very labor intensive, from discussions about relationships to having to have range of motion every hours, to refusing medication etc. I thought that this was the bad part. He was demanding of time, mad about a lot of things, ruler of the household and an on again off again, very hard to put up with man. I thought, well, even though this is bad, I can do this! WRONG ! Christmas day it took a turn for the worse. For the first time, he snapped at our grand daughters, told me he hated his presents and was generally in a bad mood all day. - Okay, I could handle that too. What came next was extremely hard to handle and I am not sure that I can. When he starts talking "crazy" his pupils get big, and the day after Christmas they were huge.
He started screaming for help, saying that he needed the police to take him away. In between us asking him what was wrong, and him swearing and throwing his mother out of the house, he just kept yelling HELP, over and over again. He kicked at the nurses, swore at his 8 month old grand daughter, screamed police, over and over again. My daughter and I moved him out of the mainstream of the house, and made him extremely comfortable in the back living room. He told us that we were hiding him and now the police couldn't find him. He yelled my name over and over again for at least an hour. But when I came to see what he needed, he would just swear at me, tell me I was going to jail, and demanding money, passport and a divorce. The episode lasted for over 20 hours. I can tell you that it shook me up very bad. One of the nurses quit and our daughter who helps take care of him was afraid to come back. We were able to get him an anti psychotic drug that we gave him and after 2 doses and another 18 hours, he finally fell asleep for a good long time.
Today, he appears tired, but "normal". I had felt like my husband had died and this crazy stranger was in our house. I know it isn't his fault, but he was so abusive, that I find I really don't want to go any where near him, unless it is to help with his needs. I started looking around for a care facility that will take him, but of course, I feel guilty about that. I really don't know what to do. I know this is not healthy for me, and he really seems like he is not happy at all.
Each time, I think that we are at the worse that it can get, it gets even harder. This has been a long journey that I hope against hope is almost to the end. I don't want to make those terrible decisions anymore. I don't want to be the "bad" guy anymore. I don't want this terrible disease to pull apart my family. I wish I could be more positive, but this past year has been horrible. Maybe in the near future, I will put the good parts in the stories of hope.
Take care everyone
I hope that you have had good holidays so far. This is a very blessed time of year, but also a hectic time.
Now for my story. Hopefully someone might have advice that I can use, or maybe just putting this down in writing helps me to not feel so overwhelmed.
I am the wife of a PALS, and while it is undiagnosed, he also either has FTD or a mania (that was suggested by our neurologist) brought on by being on the ventilator for almost 6 years. He has been very labor intensive, from discussions about relationships to having to have range of motion every hours, to refusing medication etc. I thought that this was the bad part. He was demanding of time, mad about a lot of things, ruler of the household and an on again off again, very hard to put up with man. I thought, well, even though this is bad, I can do this! WRONG ! Christmas day it took a turn for the worse. For the first time, he snapped at our grand daughters, told me he hated his presents and was generally in a bad mood all day. - Okay, I could handle that too. What came next was extremely hard to handle and I am not sure that I can. When he starts talking "crazy" his pupils get big, and the day after Christmas they were huge.
He started screaming for help, saying that he needed the police to take him away. In between us asking him what was wrong, and him swearing and throwing his mother out of the house, he just kept yelling HELP, over and over again. He kicked at the nurses, swore at his 8 month old grand daughter, screamed police, over and over again. My daughter and I moved him out of the mainstream of the house, and made him extremely comfortable in the back living room. He told us that we were hiding him and now the police couldn't find him. He yelled my name over and over again for at least an hour. But when I came to see what he needed, he would just swear at me, tell me I was going to jail, and demanding money, passport and a divorce. The episode lasted for over 20 hours. I can tell you that it shook me up very bad. One of the nurses quit and our daughter who helps take care of him was afraid to come back. We were able to get him an anti psychotic drug that we gave him and after 2 doses and another 18 hours, he finally fell asleep for a good long time.
Today, he appears tired, but "normal". I had felt like my husband had died and this crazy stranger was in our house. I know it isn't his fault, but he was so abusive, that I find I really don't want to go any where near him, unless it is to help with his needs. I started looking around for a care facility that will take him, but of course, I feel guilty about that. I really don't know what to do. I know this is not healthy for me, and he really seems like he is not happy at all.
Each time, I think that we are at the worse that it can get, it gets even harder. This has been a long journey that I hope against hope is almost to the end. I don't want to make those terrible decisions anymore. I don't want to be the "bad" guy anymore. I don't want this terrible disease to pull apart my family. I wish I could be more positive, but this past year has been horrible. Maybe in the near future, I will put the good parts in the stories of hope.
Take care everyone