Caregiving is an integral part of TMS. At each Annual Meeting and at many regional support group meetings, we offer breakout groups for caregivers along with breakout groups for Systemic Mastocytosis/ Uriticaria Pigmentosa patients and parents of Children with Mastocytosis. A common sentiment expressed in the caregivers group is that caregivers would never want to trade places with Mastocytosis patients and, conversely, Mastocytosis patients express that they would never want to trade places with their caregivers.
TMS encourages caregivers to attend these breakout groups - husbands, wives, brothers, sisters, sons, daughters — whomever takes care of a Mastocytosis patient. You will get the rare opportunity to meet other caregivers who understand the concerns and challenges you face as a Mastocytosis caregiver. From individuals who are new to TMS and Mastocytosis to our seasoned veterans, all are welcome at the meetings. We have a lot to learn from one another as we share our stories and struggles in a confidential, completely supportive environment.
Care·giv·er
n. An individual, such as a parent, foster parent, or head of a household, who attends to the needs of a child or dependent adult.-The American Heritage® Dictionary of the English Language, Fourth Edition
Mastocytosis Resources and Information
- The Mastocytosis Society 10th Annual Meeting (2006) - Caregiver Breakout Group Handout (PDF) *
- National Organization for Rare Diseases
Books by Mastocytosis Patients
General Caregiving Information
"What lies behind us and what lies before us are tiny matters compared to what lies with in us."
— Ralph Waldo Emerson
- National Family Caregivers Association
- And Thou Shalt Honor... Caregiving
- Caregiver.com
- Family Caregiver Alliance Web site
Caregiver's Stories
"Learn from yesterday, live for today, hope for tomorrow."
— Anonymous
Caring for a Parent/ Child
"I am only one, but still I am one. I cannot do everything, but still I can do something. I will not refuse to do something I can do."
— Helen Keller
Stress
"When you get to the end of your rope, tie a knot and hang on."
— Franklin D. Roosevelt
- Caregiver Self-Assessment Questionnaire (PDF)*
- Guide to Caregiving
- Caregiver Stress
- Taking Care of YOU: Self-Care for Family Caregivers
- Caregiving Risks, Dangers and Rewards
Fear
"Challenges are what make life interesting, overcoming them is what makes life meaningful."
— Joshua J. Marine
Depression
"If we don't change, we don't grow. If we don't grow, we aren't really living."
— Gail Sheehy
- The Depressed Caregiver with Suzanne Mintz
- Caregiver Depression: A Silent Health Crisis
- When Stress Turns Into Depression: Getting Help, Having Hope
Humor
"The most wasted day of all is that during which we have not laughed."
— Sebastian R.N. Chamfort