I am mentally exhausted. This has been a rough week for the both of us. Craig has been poked, prodded and zapped. Thankfully for Craig, they are done testing. They tested for a boat-load of possibilities, again ruling out everything it "could be"; as far fetched as Jakob-Creutzfeldt disease and a rare type of cancer.
We can't get him committed into the Geropsych Unit because he doesn't meet the laws criteria to "take his freedom away". What? He already lives in a locked community. Apparently the law doesn't care. I understand the intent of the law, but it is also keeping many from getting the treatment they desperately need.
Along the week I have encountered many compassionate doctors and at least one cold, heartless doctor. (I came close to bitch-slapping her). The ER doctor was a miracle to admit Craig and get him up on the medicine floor. Craig now has an entire team of medicine specialists, psychiatrists, neurologists, internists, etc from the hospital / UW and more, working together on his case because he is a difficult knot to untangle. He has the "dementia dream team" of the NW and some very renown around the world. I met with the psychiatrist today and he actually HEARD me regarding Lewy Body. What a relief after talking my head off all week. It was as if no one wanted to listen to me - who knows him best - and come to their own conclusions based on what Craig currently presented. Which was over drugged and almost catatonic.
WOW. You really have to fight and be a STRONG advocate to get what they need. Please be strong for those you love. You are much stronger than you think. I've learned that much.
After Craig was admitted he was without drugs for almost 24 hours - the hospital waited for some reason. Craig spoke without slurring his speech and made a little joke to the therapist. It was beautiful to see "Craig" again. No drugs...imagine that. Then they gave him his wad of medications and back into his drugged state he went. And during tests they had to sedate him even further because he would go into his rages when it was imperative that he be absolutely still for long periods of time. Yesterday I sat with him for over 5 hours and he slept the entire time. Today he awoke long enough to eat a late lunch and then he was back to sleep.
It may be a struggle as they remove medications over the next few days and start over; so
I ask you to pray they find the right and safe drugs and combinations and that Craig's body responds positively and he can live in peace and be that happy Craig again. Thank you.
WOW. You really have to fight and be a STRONG advocate to get what they need. Please be strong for those you love. You are much stronger than you think. I've learned that much.
After Craig was admitted he was without drugs for almost 24 hours - the hospital waited for some reason. Craig spoke without slurring his speech and made a little joke to the therapist. It was beautiful to see "Craig" again. No drugs...imagine that. Then they gave him his wad of medications and back into his drugged state he went. And during tests they had to sedate him even further because he would go into his rages when it was imperative that he be absolutely still for long periods of time. Yesterday I sat with him for over 5 hours and he slept the entire time. Today he awoke long enough to eat a late lunch and then he was back to sleep.
It may be a struggle as they remove medications over the next few days and start over; so
I ask you to pray they find the right and safe drugs and combinations and that Craig's body responds positively and he can live in peace and be that happy Craig again. Thank you.
God is SO GOOD.
Many miracles got him admitted to the medicine floor and got him the team he needs.
Praise the Lord! Praise the Lord!
Praise the Lord!
Wow....Claudia, such a difficult journey. I know it is difficult to get the right people to pay attention to you. Stay strong. You are a great advocate! I remember one time, when I was working the surgical ICU, that a nurse from across the floor came to get me for help. Her patient and family did not want the aggressive care that the physician was planning. I met them and told them I would help. I prevented the doctor from re-entering the room and told him what they wanted and that he was fired. I think I now understand that resident's comment as he was leaving...he told me he was afraid of me when he was an intern!...LOL...You can Craig are in our daily prayers. Claudia...take some time for you each day, even if it is just 15 minutes to do something just for you. Rest, eat well. We are eager to hear how he is progressing...Love, Kathy and Monte
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