The Caregiver’s Bill of Rights
I have the right:
- To take care of myself. Caregiving 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. Only I can recognize the limits of my endurance and strength.
- To maintain facets of my 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.
This Bill of Rights has been circulating on the internet for some time and is attributed to various persons on different sites. This version is taken from www.caregivers/utah.gov, where it is attributed to Jo Horne.
10 Symptoms of Caregiver Stress
If you experience some of these signs of stress on a regular basis, make time to talk to your doctor.
- Denial about the disease and its effect on the person who’s been diagnosed. “I know mom’s going to get better.”
- Anger at the person with Alzheimer’s or others, anger that no cure exists or anger that people don’t understand what’s going on. “If he asks me that question one more time I’ll scream!”
- Social Withdrawal from friends and activities that once brought pleasure. “I don’t care about getting together with the neighbors anymore.”
- Anxiety about facing another day and what the future holds. “What happens when he needs more care than I can provide?”
- Depression that begins to break your spirit and affects your ability to cope. “I don’t care anymore.”
- Exhaustion that makes it nearly impossible to complete daily tasks. “I’m too tired to do this.”
- Sleeplessness caused by a never-ending list of concerns. “What if she wanders out of the house or falls and hurts herself?”
- Irritability that leads to moodiness and triggers negative responses and actions. “Leave me alone!”
- Lack of concentration that makes it difficult to perform familiar tasks. “I was so busy I forgot we had an appointment.”
- Health problems that begin to take their toll, both mentally and physically. “I can’t remember the last time I felt good.”
Taken from http://www.alz.org/living_with_alzheimers_caregiver_stress_lwa.asp
10 Ways to Be a Healthier Caregiver
1. Understand what’s going on as soon as possible. Symptoms of Alzheimer’s may appear gradually. It can be easy to explain away changing or unusual behavior when a loved one seems physically healthy. Instead, consult a doctor when you see changes in memory, mood or behavior. Don’t delay. Some symptoms are treatable.
2. Know what community resources are available. Contact your local Alzheimer’s Association. The staff can help you find Alzheimer care resources in your community. Adult day programs, in-home assistance, visiting nurses and meal delivery are just some of the services that can help; you manage daily tasks.
3. Become an educated caregiver. As the disease progresses, new caregiving skills may be necessary. The Alzheimer’s Association offers programs to help you better understand and cope with the behaviors and personality changes that often accompany Alzheimer’s.
4. Get help. Trying to do everything by yourself will leave you exhausted. Seek the support of family, friends and community resources. Tell others exactly what they can do to help. The Alzheimer’s Association 24/7 Helpline, online message boards and local support groups are good sources of comfort and reassurance. If stress becomes overwhelming, seek professional help.
5. Take care of yourself. Watch your diet, exercise and get plenty of rest. Making sure that you stay healthy will help you be a better caregiver.
6. Manage your level of stress. Stress can cause physical problems (blurred vision, stomach irritation, high blood pressure) and changes in behavior (irritability, lack of concentration, change in appetite). Note your symptoms. Use relaxation techniques that work for you, and talk to your doctor.
7. Accept changes as they occur. People with Alzheimer’s change and so do their needs. They may require care beyond what you can provide on your own. Becoming aware of community resources – from home care services to residential care – should make the transition easier. So will the support and assistance of those around you.
8. Make legal and financial plans. Plan ahead. Consult a professional to discuss legal and financial issues, including advance directives, wills, estate planning, housing issues and long-term care planning. Involve the person with Alzheimer’s and family members whenever possible.
9. Give yourself credit, not guilt. Know that the care you provide does make a difference and you are doing the best you can. You may feel guilty because you can’t do more, but individual care needs change as Alzheimer’s progresses. You can’t promise how care will be delivered, but you can make sure that the person with Alzheimer’s is well cared for and safe.
10. Visit your doctor regularly. Take time to get regular checkups, and be aware of what your body is telling you. Pay attention to any exhaustion, stress, sleeplessness or changes in appetite or behavior. Ignoring symptoms can cause your physical and mental health to decline.
Taken from http://www.alz.org/living_with_alzheimers_caregiver_stress_lwa.asp.
The Alzheimer’s Association Website Resources on Caregiver Stress
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. The Association’s vision is a world without Alzheimer’s disease.
The site contains a wealth of information about caregiver stress – everything from assessing your stress level to learning how to manage individual stresses. The sections of the site most relevant for caregiver stress are:
1. Caregiver Stress Check and Resources (www.alz.org/stresscheck/): This is an 8-question quiz to help you evaluate your stress level. There are dozens of such quizzes and stress lists on the internet. The remarkable feature of this one, however, is that for each symptom you have, the site directs you to resources tailored specifically to that symptom. There are a total of 19 resources, including articles, handouts, a video and links to resources on other websites. Just a few of the resources are:
- Respite Care Guide
- Take Care of Yourself: 10 Ways to Be a Healthier Caregiver
- Telling Others about an Alzheimer’s Diagnosis
- Talking to Kids and Teens about Alzheimer’s
- Changes in Relationships
- Grief and Loss
- How to Be a Healthy Caregiver
2. Coping (www.alz.org/living_with_alzheimer’s_coping.asp): This section of the site explains some common physical and emotional changes experienced by caregivers of Alzheimer’s patients as well as ways to cope. It includes some of the same resources in the Caregiver Stress Check section and also has brief articles about:
- Managing the Holidays
- Depression and Caregivers
- Monitoring Abuse
3. Online Community (www.alz.org/living_with_alzheimers_message_boards_lwa.asp): The Association’s Online Community currently has more than a dozen Message Board Forums with over 14,000 registered members. One of the most important benefits is simply letting caregivers share their experiences with others in the same situation. The Forum topics of particular relevance for caregivers are:
- Caregiver’s Forum
- Spouse/Partner Caregiver Forum
- Caregivers Who Have Lost Their Loved Ones
- Questions for the Care Consultant
- Success Stories
There is also an online live chat room.
Book Review: Intensive Care for the Nurturer’s Soul: 7 Keys to Nurture Yourself While Caring for Others
By Hueina Su, MS, BSN, CEC. Published by RX for Balance Productions, 2009. Available from Amazon.com.
Hueina Su, www.HueinaSu.com, is a registered nurse with more than 20 years of experience in nursing, coaching, counseling, speaking, training, and nonprofit management. She is of Chinese heritage and is the fourth generation in her family to work in the field of medicine.
Su’s approach is holistic and blends eastern and western philosophies, combined with real life stories, practical tips and self-coaching exercises. The book focuses on stress management and self nurturing. Despite the subtitle, however, the book does particularly discuss the distinctive stresses of caregiving in great detail.
One of the most important points Su does make about caregiving is that self-nurturing is not a luxury but a necessity if one is to care for others. She compares this to putting on your own oxygen mask in an airplane before putting on your child’s. If you don’t put on your own first you may pass out and not be able to help your child. Even though Intensive Care for the Nurturer’s Soul does not focus on caregiver stress, it is a solid book on stress management and self-nurturing that can be very helpful to caregivers and the general public.