Explore helpful information for Parkinson’s disease caregivers
There is an endless list of educational material available for caregivers. Listed below are some recommended books and articles for caregivers at any stage. PAR has some of these books available for loan. Feel free to download as many copies of the articles as you would like.
A Dignified Life: The Best Friends Approach to Alzheimer’s Care, A Guide for Family Caregivers
By: Virginia Bell and David Troxel (2002)
An Uncertain Inheritance: Writers on Caring for Family
By: Nell Casey (2007)
Caregiving: The Spiritual Journey of Love, Loss, and Renewal
By: Beth Witrogen McLeod (2000)
Chicken Soup for the Caregiver's Soul: Stories to Inspire Caregivers in the Home, the Community and the World (Chicken Soup for the Soul)
By: Jack Canfield, Mark Victor Hansen, LeAnn Thieman, and Rosalynn Carter (2004)
How Can I Help? Stories and Reflection on Service
By: Ram Dass and Paul Gorman (1985)
Learning to Fall: The Blessings of an Imperfect Life
By: Philip Simmons (2003)
Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
By: Carol D. O'Dell (2007)
Passages in Caregiving
By: Gail Sheehy
Share The Care: How to Organize a Group to Care for Someone Who is Seriously Ill (Revised and Updated)
By: Cappy Capossela, Sheila Warnock, and Sukie Miller (2004)
The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life (4th Edition) (A Johns Hopkins Press Health Book)
By: Nancy L. Mace and Peter V. Rabins (Paperback - October 9, 2006)
The Caregiver Helpbook: Powerful Tools for Caregivers
By: Marilyn Cleland, Vicki L. Schmall, Marilynn Studervant, and Leslie Congleton (2006)
The Comfort of Home: A Complete Guide for Caregivers (Comfort of Home, The)
By: Maria M. Meyer and Paula Derr (2007)
The Illness Narratives: Suffering, Healing, and the Human Condition
By: Arthur Kleinman, PhD
Respite care provides the family a break from caregiving. It is provided by professionals experienced in dealing with many issues related to chronic illness or other age related issues. Respite care provides short term breaks that relieve stress, restore energy, and promote balance in your life.
Respite can take many forms, but boils down to two basic ideas: sharing the responsibility for caregiving and getting support for yourself. Finding the right balance requires persistence, patience and preparation.
Give yourself a break. Give the person with Parkinson’s disease a break. You may find the benefits far outweigh the costs.
We have provided a list for some of the Colorado respite companies who have experience working with a Parkinson patient. However, we strongly encourage you to interview more than one company to find the best fit for you and your loved one. Costs and services vary between companies.
Local Colorado Resources
Compassion fatigue is experienced as a result of over-exposure with and/or over-identification with the suffering of another. It is referred to as vicarious trauma or secondary traumatic stress. Because we are compassionate souls, we long to fix the situation. When we can't change the reality, we become frustrated, angry, and in despair.
Signs of Compassion Fatigue
Physical Signs of Compassion Fatigue
- Chronic physical ailments such as gastrointestinal problems and recurrent colds
- Weakened immune system
- Exhaustion – feeling exhausted when you start your day, regardless of how much sleep or time off you have had.
Behavioral Signs of Compassion Fatigue
- Bottled up emotions that may erupt in displays of anger or irritability
- Substance abuse used to mask feelings
- Poor self-care – neglecting personal hygiene and personal health issues
- Difficulties concentrating
- Impaired ability to make decisions
- Compromised care for the care receiver
Psychological Signs of Compassion Fatigue
- Emotional exhaustion
- Isolation from others
- Apathy, sad, no longer finds activities pleasurable
- Negative self-image and self-doubt. Feelings of being a terrible caregiver
- Anger, possibly at the care receiver, frequently followed by guilt
- Reduced ability to feel sympathy and empathy
- Loss of hope
Preventing or Overcoming Compassion Fatigue
The first step to preventing or overcoming compassion fatigue is to recognize and acknowledge that you are a candidate for compassion fatigue or you may already be experiencing compassion fatigue Self-care begins with you educating yourself and choosing your attitude.
- Be kind to yourself
- Develop a healthy support system: people who contribute to your self-esteem, listen well, and will validate your feelings
- Avoid negative individuals
- Stay connected to the outside world with at least a phone call every day or outside activity every day
- Ask yourself, “What difference does it make?” Reserve your energy for worthy causes. Choose your battles and your activities
- Ask for help. People want to help. You need to let them know how they can help. Make a short list of specific tasks you need help with and share this list with family and friends
- Consider professional counseling if necessary
There are many resources available to caregivers including:
How do you know if you’re stressed? Take the short stress test below to determine how stressed you are. If you believe your level of stress is affecting your ability to care for your loved one, be sure to seek help.
Self Assessment Tools
Learn how to take care of yourself.
Help is a phone call away!! (303) 861-1810
A wise caregiver said “The care you give to yourself is the care you give to your loved one".
Absolutely the easiest thing for someone to say and the hardest thing to accept is the advice to take care of yourself as a caregiver. It is often hard to see beyond the care tasks that await you each morning.
- 60 percent of caregivers show signs of clinical depression.
- Caregivers take more prescription medications, including those for anxiety and depression, than others in their age group.
- Reluctance in asking for and accepting help is a major barrier to getting necessary respite and support.
What does taking care of yourself mean?
It’s important to remember that being a caregiver does not mean giving up care for yourself. In fact, it is more important now to pay special attention to your needs, both physically and mentally. If you pay attention to your needs, you and the one you care for will benefit.
Education, self-awareness, and attitude are critical to learning to your manage your own stress and avoid caregiver burnout. Here are some helpful links and information to educate and inform you about taking care of yourself
Compassion fatigue: Learn about compassion fatigue and how to alleviate it.
Take this short test to find out if you’re under stress and ideas to handle it.
Respite Care. Take a short break to relieve stress, restore energy and promote balance in your life.