- Joined
- Feb 23, 2014
- Messages
- 2,636
- Reason
- Lost a loved one
- Diagnosis
- 01/2014
- Country
- US
- State
- NC
- City
- Littleton
1 Month Warning. That's what I just gave the family, via the private family FB page. One month of no quality, coherent time with Matt and we will be taking him off the vent.
He was clear headed about a week ago just long enough to tell me that crazy communication doesn't count, so when he's not able to understand and interact I need to treat him as if there is no communication at all. He originally gave me 30 days to be sure, so that's what I'm going to try to give myself now.
He thinks we are trying him up and torturing him. This is no good. It's cruel. He has fired the help several times and is very unhappy that I keep bringing them back. Today he described what he would do to his nurse if he came back in the room, and it wasn't good. Well, if he could move at all it wouldn't be good. He told the massage therapist today that he might have to divorce me because I keep him tied up. Wow. Just wow.
I had hoped to get past the holidays, but I'm not going to put him through this that long. I've told everyone that in this state he won't understand what he's already demanded that I do, so if they want to be here, we will tell him it's a party, and I'll do that same terrible thing he threatened to anyone who tells him differently. Actually, I think they will all be supportive. They've seen what he's going through.
Now to get through the rest of this month.
When he's up, he rages for hours and hours. 12 or 13 hours is not unusual. When he's not, he sleeps for days. I now pray for the sleepy days and nights.
I can no longer think of any way to make his life better, or even worth living. I fear we've run out of time. At the end of January it would be 5 years. I'd love another, but not like this.
So, do I put up the tree and turn it into a holiday party? Do I give him Christmas with his grandkids, or will that mar Christmas for the family in the future? I will ask them, but I'm hoping that doing it right will create wonderful memories and then allow them to have the holiday at at the normal time and perhaps just give him a toast.
Oh man, I've done it. I've scheduled it...sort of. I'm still hoping we can make some medication adjustment and get some more good days, and I'll call the Pallative Care doc tomorrow to discuss that, but as a friend told me today, restarting the clock because he has one good day out of 30 is not the answer. Wow. December. It's right around the corner.
Im in the middle of having the kitchen remodeled. It's the last big project he wanted to see done. Once it's finished, I'll decorate and then bring him out. Somehow, he's getting out of that bed and back into the living room/kitchen area where he can see his lake. Please God, let it happen.
I think I'm in shock. Shot. Yes, that's the answer...a shot of something strong. I think I need it.
Becky
The Queen of Crazy
PS. How the hell do I write an obituary?
He was clear headed about a week ago just long enough to tell me that crazy communication doesn't count, so when he's not able to understand and interact I need to treat him as if there is no communication at all. He originally gave me 30 days to be sure, so that's what I'm going to try to give myself now.
He thinks we are trying him up and torturing him. This is no good. It's cruel. He has fired the help several times and is very unhappy that I keep bringing them back. Today he described what he would do to his nurse if he came back in the room, and it wasn't good. Well, if he could move at all it wouldn't be good. He told the massage therapist today that he might have to divorce me because I keep him tied up. Wow. Just wow.
I had hoped to get past the holidays, but I'm not going to put him through this that long. I've told everyone that in this state he won't understand what he's already demanded that I do, so if they want to be here, we will tell him it's a party, and I'll do that same terrible thing he threatened to anyone who tells him differently. Actually, I think they will all be supportive. They've seen what he's going through.
Now to get through the rest of this month.
When he's up, he rages for hours and hours. 12 or 13 hours is not unusual. When he's not, he sleeps for days. I now pray for the sleepy days and nights.
I can no longer think of any way to make his life better, or even worth living. I fear we've run out of time. At the end of January it would be 5 years. I'd love another, but not like this.
So, do I put up the tree and turn it into a holiday party? Do I give him Christmas with his grandkids, or will that mar Christmas for the family in the future? I will ask them, but I'm hoping that doing it right will create wonderful memories and then allow them to have the holiday at at the normal time and perhaps just give him a toast.
Oh man, I've done it. I've scheduled it...sort of. I'm still hoping we can make some medication adjustment and get some more good days, and I'll call the Pallative Care doc tomorrow to discuss that, but as a friend told me today, restarting the clock because he has one good day out of 30 is not the answer. Wow. December. It's right around the corner.
Im in the middle of having the kitchen remodeled. It's the last big project he wanted to see done. Once it's finished, I'll decorate and then bring him out. Somehow, he's getting out of that bed and back into the living room/kitchen area where he can see his lake. Please God, let it happen.
I think I'm in shock. Shot. Yes, that's the answer...a shot of something strong. I think I need it.
Becky
The Queen of Crazy
PS. How the hell do I write an obituary?