Do You Know Your Rights as a Caregiver?

Meryl cares for her mother, who is suffering from dementia. She works part-time in her home as a medical transcriptionist and also cares for her three children. With all that she has to do on a daily basis, Meryl rarely, if ever, has time for herself and is beginning to feel the impact.

Meryl recently fell ill with pneumonia. She waited a while to go to the doctor, because she always puts everyone else’s needs before her own. She ended up spending a week in the hospital, which was obviously not ideal for anyone. The doctor attributed the severity of her pneumonia to her lack of self-care and the stress she is putting on herself each day as a caregiver. Something had to change or she wouldn’t be around to care for her family.

When Caregiving Becomes Too Much to Handle

The demands of caregiving can be overwhelming, especially if you feel that you’re in over your head or have little control over the situation. If the stress of caregiving is left unchecked, it can take a toll on your health and other areas of your life, similar to Meryl in our example. And when you’re burned out, it’s tough to do anything, let alone look after someone else. That’s why taking care of yourself isn’t a luxury, it’s a necessity. There are plenty of things you can do to relieve the stress of caregiving and regain a sense of balance, joy, and hope in your life, and there are “rights” you have as a caregiver. Author Jo Horne shares these things in her Caregiver Bill of Rights.

A “Bill of Rights” to Help Navigate the Emotional Stresses of Caregiving

The original version of the Caregiver Bill of Rights was published in 1985 in a book called “Caregiving: Helping an Aging Loved One,” by Jo Horne, yet her valuable guidance is still cited often today. Horne’s landmark work breaks down caregiving into its most practical aspects. The information in her book is still relevant to caregivers today, particularly as it pertains to the caregiver/patient relationship.

If you’re a caregiver navigating the stresses and emotional toll of caring for an aging loved one, you should familiarize yourself with Horne’s basic tenets (see below). We’ve also included some guidance below each “right,” based on my experiences and the experiences of our clients.

1. 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 relative.

Guidance: Don’t neglect your health because you think your loved one is more important than you are. Remember, your health is just as important as your loved one’s health, and it’s vital to being able to continue to provide care to an aging adult.

2. I have the right to seek help from others even though my relatives may object. I recognize the limits of my own endurance and strength.

Guidance: You are not an island (nobody is!). You may not be able to do everything your loved one needs. You should feel comfortable telling your relatives what you are and are not comfortable dealing with and asking them for help.

Let people feel good about supporting you. It’s smart to have a list ready of small tasks that others can easily take care of, such as picking up groceries and driving your loved one to an appointment. Or, hire someone to help!

Remember that it doesn’t make you a bad person if you can’t do everything yourself — it just makes you human.

3. I have the right 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.

Guidance: Just because you’re a caregiver doesn’t mean you can’t have a life of your own. It’s not reasonable for anyone to expect you to spend every spare minute on someone else. Make time for yourself and continue to do the things that you love and that make you happy.

4. I have the right to get angry, be depressed, and express other difficult feelings occasionally.

Guidance: Having negative feelings is a normal part of being a caregiver. It’s much better to express your emotions rather than bottle up feelings that can lead to serious consequences. A caregiver support group is a great way to share your challenges and find people who are going through similar experiences each day. If you can’t leave the house, many online groups are available.

In most support groups, you’ll talk about your problems and listen to others talk; you’ll not only get help, but you’ll also be able to help others. Most importantly, you’ll find out that you’re not alone. You’ll feel better knowing that other people are in the same situation, and their knowledge can be invaluable, especially if they’re caring for someone with the same illness as your loved one.

In addition, if you feel the need, seek a therapist you can confide in to get your feelings out in the open, and to explore strategies to better your mood and treat your depression, if necessary.

5. I have the right to reject any attempts by my relative (either conscious or unconscious) to manipulate me through guilt and/or depression.

Guidance: Remember that manipulating a caregiver, by any means, is simply wrong. It’s important to recognize when this is happening and take prompt, firm steps to stop it before the situation gets worse.

6. I have the right to receive consideration, affection, forgiveness, and acceptance from my loved one for what I do, for as long as I offer these qualities in return.

Guidance: It’s easy to fall into a pattern of putting up with negative or even abusive behavior from your loved one. But to the extent that they’re capable, you need to hold your loved ones to the same level of expectation they hold for you.

7. I have the right to take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.

Guidance: As a caregiver, you may not realize what an incredible job you’re doing or how strong you have to be to do it. Acknowledging this should be part of your reward for fulfilling this important role.

8. I have the right to protect my individuality and make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.

Guidance: It can be hard to imagine a time when your loved one will no longer need you, but that time will come someday. Take care of yourself and keep important aspects of yourself alive throughout the draining process of caregiving to make the eventual transition easier.

9. I have the right to expect and demand that as new strides are made to find resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

Guidance: You can help make this happen by being active in your local community! We’ll also continue to update our readers as we hear of developments that can help caregivers, including new laws and opportunities for respite and training. For now, you should consider taking steps to apply the Caregiver Bill of Rights to your own life! We hope you find them to be as empowering as we did when we decided to share them with you!

For more caregiving Guidance, please see our blog articles on caregiving here.

Do Your Best to Preserve Your Own Health and Well-Being

At the Farr Law Firm, we recognize that caring for a loved one strains even the most resilient people. If you’re a caregiver, take steps to preserve your own health and well-being. Part of taking care of yourself is planning for your future and for your loved ones. Please call us to make an appointment for an initial consultation:

Elder Law Attorney Fairfax: 703-691-1888
Elder Law Attorney Fredericksburg: 540-479-143
Elder Law Attorney Rockville: 301-519-8041
Elder Law Attorney DC: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.