As I have traveled around speaking about aging issues, I have discovered some surprising truths. First: If families are ever going to have conflict it will probably happen around the care of aging loved ones. Even wonderfully close families who have never had a cross word pass between them, can find themselves at almost violent odds. Some more than others of course, but some will quit speaking to one another, and more than a few will file lawsuits

It is also true that one or two members of the family will end up being the primary caregivers. I want to write a book titled "Many Are Called But You Are Chosen." Someone will end up being the "chosen one" to take on the care giving. Some of this is caused by proximity. Some by gender, if you are a woman, chances are you will inherit the job. If you are a nurse or know a nurse, you may well get chosen as well. Of course some volunteer and do so willingly and with love. Many are spouses of the one needing care so their role is automatic. No matter how it happens, there is a need for the family to have a clear understanding and an agreement about what is expected of both the care giver and the rest of the family. No family should ever assume that it will all work out simply because they have never had any problems in the past.

Understanding and agreements only happen when someone takes the initiative, calls the family together and starts the conversations. Aging is a family affair and everyone needs to be involved in the process of planning for the care and the care itself. Those who are not involved in the actual care giving need to become the support system for those who are chosen. Too often instead of giving support, they become one of the burdens the caregiver must carry.  

I think families need to write out an agreement. I call mine, A BILL OF RIGHTS FOR CAREGIVERS.  I will outline some of the issues I included in mine in hopes of giving families some ideas for their own agreements. This list is far from complete. I would hope that other ideas will come from reader comments to this blog. My Bill Of Rights includes:

ARTICLE ONE

THE RIGHT TO REST

Care giving is exhausting work. It drains us physically, mentally, and emotionally. It robs us of our own lives. It dominates our schedule. Often it takes away our spontaneity. As one lady said, "I can't even go get a loaf of bread without making some kind of arrangements.” People who give this kind of care, need several breaks per year. They need to get away from the care totally and give themselves some TLC for a while. It does not have to be a trip to Cancun but it does need to be somewhere quiet with no demands on time or minds. 

It is amazing how often the caregiver dies before the one receiving the care. This is especially true of a spouse caring for a mate. I can recall at least twenty recent cases where a spouse giving care to an Alzheimer's patient or someone needing intensive care died long before their mate. They killed themselves in care.

That leads us to the other side of care givers getting rest. Most of the time, the family has to force the rest on the care giver. The same thing that lead them to take the job, makes it very hard for them to take off. They are caring people who have become the sole provider of the loved ones needs. They tend to become very predatory and overly protective of the loved one and of their role. They can develop care giver syndrome which means their whole sense of worth gets wrapped up in the care and they can't turn loose. They will readily admit that they need rest but will always have some reason why it can't happen now. "The loved one is too sick," Or , "there is an important doctor's appointment scheduled and they must be there." No matter how tired they may be, they will always have a reason for it being impossible for them to get away. 

If the family meets ahead of time and sets up a pattern for rest in advance as well as a plan for relief of care while the rest takes place, it becomes easier to enforce. It becomes a pattern before the care has a chance to totally enmesh and dominate their lives. Even then, the family has to insist on the rest.

There is one other wrinkle in this process. The loved one will get worse when the rest break is eminent. Some do this on purpose as a means of manipulation and control. In others, it happens subconsciously and they don't mean to do it or know that they are. This makes it doubly hard for the care giver to leave for rest. It will not be easy, and it will take a lot of assurances and insistence from the family, but they really must have rest.