Hi Stan

There used to be a song that went something like this:

"Right or left at Oak Street,

That's the choice I make every day,

I don't know which takes the most courage,

The staying or the running away."

And that is how it is for me and Ray. I am making that choice one day at a time. All caregivers are different.You might think all we do is complain and whine BUT I AM STILL HERE!!

Where's the medal, eh? Is there a Purple Heart for Caregivers? If not. Why not??

There is no dought in my mind that stroke is hard on everyone. THIS IS NO PICINIC FROM WHATEVER SIDE. I totally give purple/pink or whatever color heart you want to the caregivers, they are their..they are doing this out of love. Yes it is frustraiting, yes it is a life change, but for both and all family members involved.Sometimes we survivors whine about what is lost or the pain we have..but we are ALL doing our damndest to survive and make it through another day and give love and support to each other. This is a place for support, to be able to say hey I'm having a sh&&&y day and someone can say I hear you, it will get better, hang in there, I've done that been there and heres a hug for you...

we are here for each other and for support on good days and bad

Just my 3 cents

Bonnie

ty bonnie and sue

Hi Stan,

Bonnie got to put her three cents in, I'm upping the ante....here's my four cents:

There is one major difference between caregivers and survivors. Caregiving is a choice/responsibility that we can run from i.e. divorce or try to separte out of our lives by putting our survivor in a nursing home. Survivors can try to run from their strokes (it's call denial) but that doesn't work for long. In a perfect world when we caregivers make the choice to stay we'd never loss our cool, never get sad, depressed or long for better days. We'd be the June Clever's of health care. It's not a perfect world. But I fully believe that when we've made that choice to stay for all the right reasons, then our own particular survivors understand it when we aren't the perfect Nurse Nancy's (or Nurse Ned's) 24/7/365. Love is a two way street of understanding, forgiveness and compassion.

However, when a caregiver/spouse has decided to leave---either physically and/or emotionally---then you get the kind of things that you, Stan, are venting about up above. It's not the caregiver's specific complaint per se that you're reacting to, in my opinion, it's the underlaying sense that there is a lack of compassion or love behind it. There are a lot of pre-stroke things in a relationship that factor into why marriages don't hold up post-stroke and I wrote about them in detail in my "Trial by Fire, Complex Relationships" post. http://www.strokeboard.net/index.php?showtopic=1306 I guess what I'm trying to say here is that not all caregiver vents are equal. Most of of us caregivers who hang around this site a lot are in it for the long haul...and for the right reasons, we love our mates.

Jean

stan-i saw this blog before i left for an Al-Anon meeting this morning. i knew that i was going to respond to it, but i came back home and Jean 'stole' most of what i was going to say (i guess great minds think alike). however, i feel that i have to chip in another six cents so that the four combined posts can be worth at least 10 cents. isn't that what Lucy charged for psychotherapy when the Peanuts strip ended?

i am primary caregiver to my husband John and secondary caregiver to my dad. i love my dad and John very much. in the last few days, the following has happened:

1) my dad deliberately disconnected his feeding tube from the attached bag on Thursday, flooding his entire bed and himself with liquid food. he did this because he had to sit up, move up on the bed, reach over, and twist the tubing until it disconnected. he had never had the mobility to do that in the two years since he first stroked and did it because he wanted to see if he could accomplish this.

in conversations with him afterwards, he told me that he felt that if he had more control over his situation he wouldn't be afraid of going to the wound care doctor next Monday. he also told me that he was not afraid of dying because he wasn't going to die-he was 'god's right hand man' and would not die until he chooses to;

2) John decided to fix a broken doorknob yesterday because one of our cats was upset that the doorknob was broken and the door to her room was not closed, thus allowing the other three cats into her room (the room has a cat window which two of the cats can't use). after 10 minutes he called to me to come fix it. i said no, and he came downstairs and spent 20 minutes cursing me out. when i finally

went upstairs hours later, i saw that he had inserted the lock in a locked position without the doorknob, and locked the door without any release mechanism. i tried to pull the lock mechanism out of the door with a pair of pliers, but couldn't. he spend the evening being verbally abusive, so i ignored him. today, after buying a second doorknob, he pulled the first lock mechanism out and installed the second doorknob. he would not have done this before his TBI.

this is just a partial listing.

it is very difficult and frustrating to be a caregiver

i think that you are responding to the posts of caregivers who clearly show no positive or loving feelings for the stroke survivor, not to the posts of caregivers who are just venting the normal frustrations of a reasonably sane person that has been caught in a horrible situation with somebody that they love. i think that the dynamics of the former type of relationship had to have been dysfunctional before one of the people in the relationship stroked, and one or both of these people deep-seated characterological issues and/or major psychiatric diagnoses. in the latter type of relationship, its just two or more people being caught up in a difficult, frustrating situation.

sandy

sop true sandy and true dat to u to mis jean