Over and beyond the insurance issues:

I took Dennis in for his follow-up today. That, in itself, was good. The fistula has closed, we could get rid of the trach, and they gave me better treatments for the open wounds.

FAST FORWARD...I made a wrong turn in Baltimore trying to get home...........God forbid, anybody who has ever been to Johns Hopkins knows how simple that is. Dennis started throwing his hands around, (I'm surrounded by 4 lanes of traffic), After asking his directions several times (granted, I'm trying to read lips during all of this) I finally pulled over, and he promptly pulled out his writing board and told me to "F^ck You".....He was pissed b/c I couldn't find our way out of Baltimore. I tried to tell him that I was lost, was sorry, and wouldn't go any further until he helped me. He took the message board and shoved it in my face. I have the bruises to prove it.

At this point, I wandered around, finally found Bowie, and reported it to our home care nurse.

I can't do this. I've been here............I've fought for everything that he has. This week makes 20 years that we've been together, but , damn..............when is he not responsible for some of this?

Love,
Mandi

Oh Mandi,
Am so sorry this happened to you--the stress of caring and worrying is bad enough, but add to that the driving hassle and then Dennis' reaction and you must be feeling devastated.
Hope the home care team can give you some comfort, thinking of you,

Brenda

My life has been changed forever since my wife bought me a Garmin gps navigation system.

She drove me 60 mile each day for Tx and I mainly slept. This is not to say that I was a "good" patient - I wasn't. Having the crap kicked out of you by the Tx is something only another person who had walked in those shoes can understand but physical (and verbal) abuse is domestic violence.

Anti-anxiety meds (for Dennis) and some counseling may be in order here.

Dennis is already on Zoloft and Trazadone. You would think those, coupled with Oxycodone every 4 hours, would be enough.

The home health care nurse wants to talk to him today. I've told him that is fine.

I'm a small person (5" 0', 110 lbs) He is still a strong man even though he has lost 30lbs. I don't mean any harm, but enough is enough. I've got two teenage boys to think of.

He just proved to me yesterday that our lives aren't worth considering, in his opinion. I've got to look out for us.

love,
Mandi

Mandi, You absolutely do have to look out for yourself and regardless of how much hell your husband is going through, hitting you in the face with something is physical abuse. It may be something he would never do were he not in these circumstances but it doesn't matter--at this point you need to take care fo yourself. I do think if possible your husband needs counseling. he can't be happy with himself that he behaved that way.

And you have been an AMAZING caregiver advocating for him this way. I only wish my husband was interested in doing half the advocacy and learning about what I needed when I needed him most.

Nelie

Mandi - I am so sorry for what you are going through. I hope the nurse can talk with him AND evaluate what's going on. Not to give Dennis any excuses, but it could be that the combination of meds plus his health status has pushed him to the point that he is not psychologically stable. If his nurse has any doubts, his primary physician should be consulted. I remember when my father was very ill and he did the same thing to me one day in the hospital - shouted at me and tried to hit me. I ended up sobbing in the hall, but it was all a result of the medication he was on plus his health issues. I know you are doing your best and it must be so difficult for you. Wish I could do more to help...

Mandi, Please know that all the caregivers here are at your side, holding your hand, and propping you up. You are in a surreal situation and it is very hard to deal with. How strong are you? Amy in the Ozarks

Oh Mandi!!!! How very familiar that scenario sounds,and how many memories of drives home from the hospital blinded by scalding hot tears it brings back.
Without a doubt Robins apparent total disregard and contempt for my input and my feelings ground me down to the point of leaving,which of course i eventually did for a short while,a decision which sometimes i regret bitterly,and at other times i know was the hardest but the right thing to do because ultimately i wouldn't have had the strength to cope with what was to come.

It Wasn't until the palliative care team with all their practical and emotional experience were on board that i managed to even begin to understand why he was behaving the way he was.They had seen it all before many many times and sat for ages talking me through all the reasons why he was so aggressive and seemingly dismissive of my part in his care,and how his disease was affecting me.

I realise Dennis isn't in the same place as Robin was but the worst time we had was post Tx long before we found out he wasnt going to make it,and seemed to be born of anger and frustration because his recovery wasnt following the route we had been told he would take,and it was so much two steps forward and sometimes three steps back.That coupled with the drugs and the fear of the future were a pretty explosive mix .

None of this will help you at this stage of the game,you are exhausted,scared,frustrated,hurt and i bet you feel totally unappreciated and also very angry.
i promise you although it wont make all these feelings go away,you are not alone honey,but you need to find two things.

Firstly someone for you to be able to talk too,and secondly someone for Dennis to comunicate his feelings and frustraions too.

Juliekay,Margaret myself and many many others have unfortunately walked in your shoes and its not easy and is not pleasant,so please do not hesitate to use our experiences to let us help where we can.It does get better i promise.

love and hugs
liz

Liz, this is the reason you are here. Your experience, your "walk towards the light with Robin," has given you insight like no other. Please know on your darkest days, that you have a purpose! Deb