I have spent the last twenty five years traveling over the U.S., Canada, Australia, and New Zealand talking about grief and elder care issues. I did about sixty stops per year for one large nursing home company speaking to families who were facing long term care decisions. I can not remember one stop along the way when I did not talk to more than one primary caregiver who was almost ready to have a nervous breakdown. There is no way for me to begin telling all of the horror stories I have heard.

One lady said, "I cared for my husband for over five years until he died recently. It was a second marriage and his children never acknowledged that I even existed. They were no help at all. They would hardly speak to me, but every time they visited their father they had a list of demands that evidently had come from them getting together to complain and criticize me and the care I was giving. Now they are suing me over how I spent the money for his care."

Another woman said, "I was the only one who gave care to my father. My brothers did not help in any way, not even financially. They seemed to team up on me with their criticisms and demands most of which centered on how much the care cost. Now they are suing me over the money."

Most of the pain I have heard comes from pressure and criticism generated by the rest of the family talking behind the caregivers back. They seem to get each other stirred up and build all kinds of accusations about the care and the cost. The caregiver knows nothing about the problem until the issue has been whipped into a frenzy that explodes most likely at the most inappropriate time possible. 

I am tired of harried, worn out, worried, and sad caregivers being hounded by family members who think being a critic is their way of giving care. I think the family needs to agree to one simple rule and commit themselves to follow it no matter what issues arise. The rule is:

If I have a problem or a question about the care of our loved one, I will go to the primary caregiver in person and face to face. Under no circumstance will I first talk with my siblings or any other group. It will then be the caregiver’s choice whether or not to follow my advice or make the changes I suggest. I will listen carefully to their side of the issue and since they are the one giving care, I will abide by their decision. 

That will not be easy and will involve a lot of tongue biting, but sore tongues heal. The stuff I see happening never does. 

Every member of the family needs to take a turn or so being the one giving the care. There is no way to imagine the pressure one is under. There is no way to describe how tied down caregivers feel. They cannot relax. They cannot just decide to go shopping or to take in a movie or vacation without making prior arrangements. Everywhere they go they must keep one ear open for a phone call and always be ready for the next crisis. Then to find out the rest of the family has been talking in secret about all the things the caregiver is either doing wrong or allowing some healthcare provider to give what they think is poor care. 

I have never been to a sporting event that I did not hear someone in the stands complaining about the coach and the team. I finally told one couple that I thought it a great shame that the only ones who knew anything about the game would not come out of the stands and go coach the team. They were not amused by my humor. I have watched far too many family members "coach" from the safety of the stands and have seen far too many caregivers crushed by the pressure and the criticism. If you aren't brave enough to say it face to face, then don't say it, ever.