Dan's going to do what Dan's going to do.    If you don't go, he'll just find another reason to act out... because somehow it's part of his up and down cycle.   I say go.... imagine the hunger strike he'll throw if you fall dead and never come back, because you never gave yourself any down time?    You have to balance taking care of him with making sure you are around (well, best any of us can be sure).    And yes, you may not see it, you are too close, but Dan is a MASTER manipulator!     (always hugs, and lots of them)

I do see Sandy's point and agree with her for the most part. The issue I have trouble with is the master manipulator, because (and just consider this as another issue) Dan is less fearful if all his ducks are in a row - Dan's definition of ducks in a row, of course.

Enjoy your time with your friend and your own personal time out. Debbie

Hi Nancy, I agree with  Sandy,  Dan knows how to manipulator, and yes he may go on a huger strike, but I am worryed about you.  I read that you need  rest, a good sleep does you good, and Nancy you will have it  on your mind if you don't go and help out a good friend.  Also all that money gone down the drain.  You are a great caregiver, always on call, get yourself some rest, or you may get sick then what?

Have a great time

Yvonne

Nancy, I have no idea what you should do.  I have heard this scenario in Dementia classes so I always associate it with brain damage and as we know there is no "fix" for that.  Going away was okay for me as Ray accepted going into care and as the place he first went into made a BIG fuss of him he was okay with it from then on.

I wish there were carers that could understand our men the way we do and reacted to them in the same way we do but on the whole they just go by what they have learned and that has to be okay. I hope you feel you can get away, you certainly need the break.

Sue.

Day 6 of food strike -- however through the power of manipulation ( jeez the things i have to resort to) I have managed to get him to drink SOME coke through this -- so at least a little glucose --- and of course his port IV ---- but he has been intent on seeing this "what ever it is through" -- he assures me he will eat on 08-19-2014 ( tuesday) ---- except i have been lied to before… so we will see…. I hope today or tomorrow depending on the time zone works out --- cause if nothing else although he has brushed his teeth-- his breathe is soooo bad… I know a person can last a long , long time with no food-- but me the caregiver just can't do this much longer… I am up so late cause i laid down next to him and could not sleep -- just "playing the bad thoughts of - why us- through my head and had to get up and have a drink to get me a little tired so i can sleep… - i go from sleeping way to much to not sleeping… He has a doc appt today ( 3pm) and i honestly don't know what to ask for -- still sorting through the dilemmas of ethics on the food tube ( g-tube) again ---- and the follow up on the sprained ankle which ironically happened a little over a week ago -- the ER doc says follow through with your PCP -- EXCEPT -- oops scheduling out for a MONTH… dan only see's her because of the last food strike a month ago -- we are just NOW getting in from that little dilemma… HELP…. this non carry over of continuum of care is terrible… . For me I don't know how much more I can take … the kids are worried about Dan , and ME… they feel they have lost both parents and they have…. I guess I need to make a appt every month just to assure that maybe we can see her half way regular -- and it is not her fault -- it is just the way it is… so i guess the caretaker in me needs to find a way around the system-- since the system is not designed to help the patient ---- used to be you needed to see your doc you could see them -- now a MONTHS wait are you kidding me??? GRRRR frustration … Help the medical system is broke … as if that is news to anyone on stroke net LOL...

So ---- more bad news… Dan hauled off and hit the caretaker today… he finally got up and showered and sat out on the deck for a little while with her.. and then decided he wanted to go to bed, she was trying her hardest to get him to leave the house… and then said well , wait i gotta get the bedding out of the dryer, it wasn't dry - but dan decided he was going back to bed - and she yelled at him - knock it off ( remember he sprained his ankle with her pulling this same stuff - so she was sincerely scared) so he hauled of and hit her in the stomach….. she called me told me what happened - i went home - dan was crying and felt bad about it… got him up - he still hasn't eaten at this point - day 7 - and he had a dr. appt.. some I managed to get him to get up…. he cried - and hugged her and said he was sorry - she was crying to at this point… I am just numb from all of his nonsense the last few weeks… - we get in the van get him to eat a little bit of soup at a restaurant -- took him to play cards for a few minutes ( he won 30 bucks) .. then to the doc. appt… we discuss issues and dan has another melt down at the clinic so the caretaker takes him to the van… the doc and i talk and we are going to look into some psych care for him asap….. i am thinking Mayo in MN or AZ -- i have emailed them… she was gonna see if she can find anyone from ND that has some experience… so I don't know whats gonna happen -- he is so manic right now up/ down/up down.. happy / mad ----  will this ever end … at this rate i am not gonna last the year… I am not blogging this separate -- no point i am so sick of my own life i just wanted to add a entry… as a footprint for the next poor soul who might cross into crazy land via - a stroke… nancyl

Nancy, I just don't know what to say.    I can only imagine that if Bob was acting like this I would not allow him to destroy everyone else.  

I am kinda like the frog getting boiled -- i look at what i write and think the same thing -- then i live it and just freeze up and don't know which end is up right now… side note.. he hit me with his urinal last night - I told him Enough -- cleaned the urinal and then i went to another room to sleep.. didnt sleep much ( wonder why) … this morning he was pretty quiet and looked at me and said good morning - and i said is it ? -- then I sat and talked with him… religion and being a good person used to be a priority - so i went down the road of - I know you are hurting inside - god knows to, but this stuff you are doing is absolutely wrong.. and he watches and he knows , your pain but you just Can not do this anymore…. then he said up and down up and down… and said i know what do you expect when you don't eat for days at a time… it is craziness and i'm not gonna deal with it to much longer…. he went on to have a decent day - had to get his tooth fixed .. and he was aching and crying by the time that was done ( the sprained ankle still aches like crazy) so he got a pain pill and got some relaxation with that….. ( i was at work today - i had a lot to catch up on) and when i got home he asked why so late ( not verbatim) but gestured to the clock and shrugged … so i told him when i spend all day messing with your actions yesterday -i  still have work that needs to be done and had to stay late and get caught up… god i hope the worst of this "storm " is over - i am waiting to hear back ref my requests to mayo -- and what our pcp finds out… 

Nancy... I feel like I'm standing on the bridge, watching a friend drown... it is with this sadness, that I try to say whatever I think would be true support to you, rather than just a slap on the back and a 'you can do it'.

... the urinal?   I don't think staying in an abusive relationship is helpful to any of those involved.    A bully is still a bully, no matter if he had a stroke, cancer or car accident.    You are too close to the situation (frog in pot) to sort it out reasonably.  

I hope with all my heart that you will consider counseling concerning this, because you can no longer see the needs of all, only the bully in the room that keeps pantsing you and flushing your head in the toilet.    You really really need someone on your side and to listen and help you sort all this.... someone that is not just a boardie, but a professional that you can have confidence in what they tell you.   This is not criticism, it is a life ring I'm throwing out to try to stop the demise of the whole family.   I may sound like I'm criticizing, but I am not, I'm honestly trying to give you the support to save you before you all go down.

Once I was watching this show about a person who could 'talk' to the animals.   These people had this little dog, and it barked non-stop.   They hated to think about it... BUT, the barking was so bad, that they were afraid they'd have to get rid of it.   The animal whisperer had a mental discussion with the dog and told it what they were thinking.   The dog was shocked, because it thought it had a BEAUTIFUL voice and that everyone would be loving to hear it all the time.   Would you believe it... the lady must have really had the ability, because when the dog found out it was going to get the door, it stopped all the barking.

Now Nancy, this is just my mind thinking, I know.... but it seems Dan thinks he will SHOW YOU that you aren't going to get away with working.    He might greatly benefit from you explaining to him that you have the job BECAUSE of his acting out, BECAUSE you really need time away from him and time with people who treat you fairly and with respect.    It's like the dog,, if you don't lay your cards on the table and let him know that he is the one driving you away, he will continue to act out, thinking to control you.   It's only fair to him to give him the chance to understand the result of his own actions.    How can he act responsibly when he believes his actions are the way to make you do what he wants?    If a child throws a tantrum, then gets everything they want, why WOULDN'T they keep throwing tantrums?   Don't surprise him one day with calling someone to take him away when you finally break.   Much better to let him know it could happen, so he has the CHANCE to change his behavior.   So, what will he do... hunger strike?   Won't be the first time.   For instance, no way in this world, I would take someone that refused to eat all week to play cards.   One hand washes the other.   He makes my life easier by responsible actions, I am physically & mentally able to do something special with him.

OK, I've said my part, it is what I believe in my heart, and said with a desire to give YOU the support you need to stand and seek any and all help to help you see it all clearly and sort this out.   But I will not beat a dead horse and keep harping on it, once is enough.    I leave this message with the best interest for all of you and hope you can get thru to him with it, Nancy... the rest of you are just as important as he is - you need to know this in your heart again... and Dan needs to learn it.

Agreed--- I am trying my best to get a handle on this - and I don't take this as anything negative.. I am the mother of a 3yr old and I have been approaching some of the issues wrong.. and probably will continue to somewhat… Thus the need for a restart so to speak…. if I can start to get his depression issues addressed with the right " brain damage " guidance and meds hopefully in a inpatient type of program that would be helpful…. and that is why i refused to sleep in our bed last night … Another girlfriend said basically what you are saying….. what would the "old" nancy have done ? For certain not what i have been doing , believe me it has been all i can do to keep from just quoting my job, but that is my one piece of normal … and I am not giving it up, just as I am not going to give up my pending trip… And in hind site I see the card issue as being almost a reward for his behavior… But in actuality what I was trying to establish with him is - see, you can do other things than lay in bed all day.. The caregiver will take you for cards, but you gotta MOVE and eat - and desire to do that… I am trying to create bond for dan with the caregiver - so that he isn't so reliant on me… the only way to do that is with some positive reinforcement -- caregiver can be fun, not hated… and he does like her for the most part… as far as getting a true Pro in here… our economy is so messed up that getting anyone at all is a miracle .. seriously there are so many jobs , places are closing as they have no work force… So the card playing hind site bad idea .. agreed… and point taken he needs better warnings - food strike so be it cause as you pointed out it wouldn't be fair to lose it one day and have him hauled away…. I am a shell of who I used to be believe me.. the frog analogy was built for me… gotta be a reason for all this BS - right… the old nancy woulda grabbed the urinal and hit him over the head with it, ( obviously I can't go there now)- and we never had a abusive physical relationship so it would not have happened ,  but I removed myself from the bed and that did seem to matter to him….. lots to learn he keeps changing, and keep trying to figure out the new game -- as he is as well….. thank you Sandy -- a good clobber never hurts and i mean that in the fun loving girlfriend type of way… nancy

Consider yourself clobbered, girlfriend (((HUGS)))

Dan is becoming clearly psychotic.. I am waiting for a referral to get him some help… He is not right, truly not right, something is going on in that brain of his.. I don't know if he has some scar tissue or what but he is not right…. laughing , crying, alternating constantly …. gets up , to hopefully leave the house and walks to the living room and decides he isn't going anywhere.. and it is like he really, really has no idea what is going on sometimes…. yes i have contacted all the players, and am waiting to hear a game plan, since I have no ideas….

Nancy, here's some links that you can read while waiting:

https://search.yahoo.com/search?ei=utf-8&fr=ytff1-gl-gen1&p=stroke%20laughing%20crying%20syndrome&type=

I have been thinking PBA as well, but this inappropriate laughing is a new thing, the crying old, but this laughing was just plain crazy and went on for like a hour… and talking to himself ( babbling) .. and i think even he knew he was slipping a cog so to speak, but just had no way to control it. then he laid down and said die now… and i swear didn't move from that " death position for about 6 hours… not even a itch to his nose… finally when he actually fell asleep he turned on his side…. I think there is a chemical or brain lesion going on… something is not right...

laughing may be new, but it is still a factor that can occur, even if it wasn't there to start with.    Be sure to ask specifically about PBA when talking to his doctors.    I swear, whatever I didn't ask about myself, they skimmed right over and ignored.

UTI of all things--- did not occur to me in the least, since it has been so long and the port hydration has worked.. no idea on how long, but they said there was a lot of bacteria… although he was not septic from it…. He will be transferred to a psych hospital after he has been treated for the uti here in jamestown… the nuero gal from fargo got on top of this for me and got it handled… My instructions go to AZ before you have a breakdown….I have signed over power of Atty to my ( nurse girlfriend) wendy who will take care Dans health issues - needing decisions while i am gone… I reinforced absolute DNR instruction for all concerned… 

I'm glad to hear something is happening (2 things actually), and hoping it will make a big difference.    Go get yourself some down time!