A Caregiver's Bill of Rights

by Pat Catalano

One of the most difficult tasks that can befall a person is to find themselves as the caregiver for someone they love. Often this loved one was once a source of strength, someone we depended on, either as a parent or a spouse or even a sibling. That change in status can be overwhelming, both in terms of the physical demands of caregiving, as well as the emotional upheaval that accompanies it, leading one to give so much that nothing is left for our spouse, other family members, friends, or even ourselves. It is important to find a balance between being a caregiver and being an individual in order to maintain both strength and sanity during this difficult time. Taking on this responsibility does not mean you need to throw away all of your rights as an individual. The following is a list to pull out whenever you're in danger of forgetting your rights.

  1. Taking care of yourself is not a crime. You are not Superman or Wonder Woman, although at times it may seem that your loved one, as well as so many others, expect you to be. Be realistic about what you can handle, and don't let anyone tell you that you must do more and more and more.

  2. There are many people who have been in this position. Talk to them. The benefits of doing this are twofold. One, you can find out how other people have handled the situation. Don't be afraid to examine the different ways others have approached caregiving. See what ideas work for you. You may discover that an idea from one person and an idea from another can combine to suit your own situation. And two, you will get a great deal of understanding and support from other caregivers that you can't get from anyone else.

  3. There are days when it seems as though every relative you have is telling you how to care for your loved one, even though the bulk of the responsibility falls on you. Relatives are prone to trying to control a situation they don't want to take on! If you are the caregiver, the decisions are yours. Don't let anyone make you feel guilty for the choices you make. It's OK to use your own judgment and do what seems best to you, no matter what anyone else says. If that means getting additional help, go for it. You are the best judge of what you and your loved one needs.

  4. Try to maintain the parts of your life that were important to you before you turned into a caregiver. You don't have to stop living. Sometimes it's good to do things that are just for you! You can be a good caregiver and still go out to dinner with a friend every once in a while. It doesn't make you an evil, selfish person to find time for yourself, your friends, your other family members and your favorite activities. You will be in a better frame of mind and be a better caregiver if you get a break every now and again.

  5. Realize that you will not be a caregiver forever. If being a caregiver has become your whole identity, it will be that much harder for you when you are no longer needed for that job. Be prepared for future transitions. Remember, you are not an appendage of the person you are taking care of. You are more than just a label of what you do. Protect your individuality and continue to make a life for yourself. Don't allow the demands of caregiving to push aside this basic piece of life advice. Being an individual is always important.

  6. Pretending that you don't have emotions throughout such an emotionally demanding time can lead to being sharp with your loved one, angry outbursts, as well as other physical and emotional health problems. Be gentle, patient and understanding of yourself when difficult emotions come up. Getting depressed or angry is natural. Acknowledging your emotions is the first step towards dealing with them and will keep you from turning into an emotional basket case.

  7. Receiving consideration, affection, and forgiveness from your loved one is something that you deserve, just as your loved one deserves to get the same consideration, affection, and forgiveness from you. You do not need to accept that it's OK for your relative to take out their fears or anger at their situation on you.

  8. You have the right to demand that strides will be made towards aiding physically and mentally impaired persons as well as aiding and supporting caregivers. Right now, available help and understanding is inadequate in the face of the growing need of caregiving in this country. There is a lot of room for growth in this area. Don't be afraid to demand changes.

  9. Take a moment to applaud your courage in taking on this task, and have pride in what you are doing. You may not feel that you are doing as much as you should, you may think that you should be doing more. Stop putting yourself down and look at all you are doing. And then take a moment to feel good about yourself.

    Remember that the responsibility of caregiving needn't end your life as you know it and make you forget who you are. It's very easy to let a loved one's needs take over your life until there is nothing recognizably "you" left. Don't lose your identity! Drawing boundaries will actually make you a better caregiver, while maintaining your identity. So, believe that caregivers have rights too. And act on them!


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