A Caregiver’s Bill of Rights

It took a while for me to realize I was a caregiver and what that actually meant. When my 0 Care 8husband was diagnosed with Alzheimer’s disease in 2006 and when he needed extra help as the illness progressed, I didn’t understand I was a caregiver. I thought I was simply lending a hand with things he could no longer handle himself. I didn’t label what I did for him. I did what I did without thinking of it as a burden. I was simply doing what one person does for another they love.

There’s no doubt that caregiving was the most difficult job I’ve had, the most difficult task I’ve undertaken. Yet, it’s also been the most rewarding work I’ve ever done. During my caregiving experience, I discovered that the obligation I had so lovingly and divinely cluelessly undertaken is best carried out with a yes attitude. And by saying yes to being a caregiver, I had equally importantly said yes to doing all I could to take care of myself.

Why do caregivers need to take care of themselves? 

The National Center on Caregiving reports:

  • Elderly spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63% higher mortality rate than noncaregivers of the same age.

Wow–63% die before their spouses!  If we surmise mortality statistics for younger spousal caregivers at half that–say, around a 30% mortality rate–it’s still insane!

The Alzheimer’s Association chimes in with this:

  • Nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high; about 40 percent suffer from depression.

That’s why caregivers need to take care of themselves. You’ve heard the flight 0 Care 2attendant spiel–the one about putting your own oxygen mask on before helping someone else. This is the same thing. If you’re a caregiver and don’t take care of yourself, you won’t be able to take care of your loved one. You may not be around to do it.

During my caregiving days, I came across a Caregiver’s Bill of Rights that recognizes the limitations and needs of caregivers and gives them permission to honor themselves and to have lives of their own beyond caregiving. While I was guilty from time to time of not taking care of myself, it didn’t take long to catch myself straying from the path, then getting back on it again by finding the help I needed. Every caregiver is entitled to each of the rights detailed in this document.

A Caregiver’s Bill of Rights
by Jo Horne
(see the original here: Today’s Caregiver)

I have the right:

  • To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.
  • To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.
  • To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
  • To get angry, be depressed, and express other difficult feelings occasionally.
  • To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.
  • To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
  • To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
  • To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
  • To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

There’s no doubt that caregiving is a long and difficult journey. I found that by 0 Care 4embracing these caregiver rights, I was able to face and get through the grueling challenges of taking care of my husband as he slipped deeper into Alzheimer’s and away from this life.

As caregivers, we want to do the best job possible. The only way to do that with any consistency is by taking care of yourself. When you take care of yourself, you’ll realize your full caregiving potential. And once you think you have nothing more to give, that’s when you’ll come into close personal contact with the inherent spiritual secrets locked within the experience of serving.


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