Nancy, you have my commisserations, Ray was stubborn but your Dan is the Grand Master of Stubborn. If it had been my choice I would have called an ambulance, thrown a monster tantrum myself so they knew I was no longer coping and seen him carted off...hospitals are very good at just letting people die if they want to.

I wish I had a solution to your problem but I don't. I would just say put all plans on hold for the present, take it hour by hour, day by day. Take a break every two hours of at least twenty minutes when you do something you like to do. I think maybe you are like a mother with a constantly crying baby and need to know when you have to attend to the cry and when it is safe to just ignore it.

I never had the problem to the extent you have, someone else here may have better advice but I want to say I hear you and wish there was something you could do this instant to change things.

Sue.

Nancy,

I thought from the title of this Blog as I read it you had gone into writing poetry and trying to figure out if you should get it published.I sure don't think you an idiot by any sense of the word or mind for that matter. Sorry to hear Dan is having a problem but hope it passes soon so you can get some rest again.

If he drinks water or another liquid perhaps you can if possible mix his med in it since he refuse to take them because you know he needs them badly. Otherwise a trip to see his doctor may be the solution to get him back on track. Hopefully no seizures will pop up while he is in this state of mind and it doesn't last much longer. I know it's very cold there so is he keeping warm enough??

I don't know what the solution will be but you can't continue like this very much longer. You had enough of it while on the trip to AZ last week. Try to take it easy for a few minutes once in a while while you play with your IPad.

Nancy, today we visited our new "neuropsychiatist" for the third time....do you have anything like that there? They are insisting I put Ray in daycare, that it would be the best for him and for me, they suggest five days a week although that seems extreme right now, but after reading the book they recommended I know what they mean. Or can you put Dan in a respite situation for a week or so? You can't keep going on like this, and I'm pretty sure you know it deep down inside.

You are definitely not an idiot. You are overstretched and overwhelmed by a completely unmanageable situation. Nancy, I just want to whisk you away right now. The only thing I have to suggest is to pick up that phone at the first moment of seizure and call 911. Get him into the hospital first of all and then regroup and develop a plan. There's no use to cry, beg, cajole, or manipulate. It won't do any good, as you've discovered now and before. My heart breaks for both of you.

Nancy: you are in a meltdown. You know it but can't stop the downward spiral.

So back to what I said the other night FIRST AND FOREMOST when was the last time you had your blood tested?

You can't fix Dan. You can not make him WANT it. Personally this was one of the hardest things I had to accept at just about the time line you are at. That being said, you can not get to acceptance or trying to figure out where to go from here, unless you personally are at the top of your game. And that starts with your own health and wellbeing.

I agree it is time to consider private caregivers, day care or even a respite stay. If he won't do it for you, what difference does it make who then is in the house? Take the break.

Yes, it is heartbreaking to see them go through the grieving. You support, listen and just try to get them through. They must let it out and you did that with Dan. But at some point, it is time to pick up and move forward. Dan will get there.

When you are assured your health is on an even keel, you then can start to consider a new direction. But right now, it is imperative that you get some advise on your own health and get some distance on this. Because it will happen again and I promise you it will be how you get through this that will determine how you will get through incidents in the future. Praying for you, you know that. Debbie

Nancy, your post made me want to cry. I agree with Debbie, you are in a meltdown - and no wonder. You really need to do something different. You can only do so much for Dan, the rest is up to him. I f he doesn't want it, there's nothing you can do.

I wish I was close enough to give you a hug. Please step back and take care of yourself. You're in my prayers..

Nancy,

I went through this with Gary also. He kept asking me "why did you let me live like this?" I told him , I had no choice since he never put anything in writing and we had no idea he would have a stroke at such a young age. We increased his antidepressants at the time, but then as he began to accept his "new normal" we were able to decrease them again. He still has days where he wonders why he's still here, and just last week he grabbed a butter knife off the table and tried stabbing himself in the chest with it. I grabbed it from him and reminded him how far he has come since the stroke and how hard I've worked to get him to this point, he broke down crying, then five minutes later forgot that he had done it. Just goes to show there's no reasoning with brain damage.

Call me if you need to talk.

Sarah

Nancy, Dan is known for having spells of not being willing to take his meds & food/drink. That is the purpose of the feeding tube. His bouts of doing this are re-occurring, so there is no removing it. That's why it is is place, so when this happens, you have that option.

>So now to wait for the seizure, and the dehydration to step onto the forefront

-No, that is not it. I think as caregivers, we are the ones calling the shots, we do not wait for them to decide to come in from the car, we do not wait for them to have a seizure before we step in. We go ahead and step in. Call the doctor, whoever it is you call, and have him admitted, redo the feeding tube, and have him admitted to somewhere, because you are not able to control him. You can not do what you can not do. When the point comes that you can't do it, you have to get someone else to do it, whether or not that is permanent or not, is not something you have to deal with now. But I believe that waiting for him to go into seizures and dehydrate is not the way to to go on this. The 5 year old in the room should not be the one calling the shots. You need help and need to reach out for it NOW, before things become critical and you end up blaming yourself for that, wondering why you didn't do something sooner.

You are in trouble here, I feel horrible for you, and know you are suffering, and now you need to keep being that caregiver by doing what you HAVE to do, for the care of your guy. Failure to do that, and waiting for the consequences could even be a legal problem down the road. It happens, we hear of caregivers who were in court for letting the handicapped one have their way, to their own demise. Protect him, protect yourself, call the doctor tomorrow morning.