Care for the Care Giver


Caregiver Action Network (CAN) Launches Website for Rare Disease Caregivers

Dateline: World Rare Disease Day, 2014 (February 28th)

An estimated 350 million people worldwide suffer from rare diseases – including 30 million in the United States and another 30 million in Europe.  Launch of coincides with the 7th Annual World Rare Disease Day on Friday, February 28, 2014.  World Rare Disease Day 2014, whose theme is “Join Together for Better Care,” raises awareness for rare diseases and improving access to treatments and medical representation for individuals with rare and genetic diseases and their families. 

The website at is a guide for family caregivers of loved ones with rare diseases and features information helpful to the caregiver (known around the world as carer, cuidador, soignant, betreuer, and other phrases, depending on the country) such as:

CAN’s new “Caring for Rare Disease Caregivers” website was supported with funding from Genzyme, a leading biotechnology company whose mission is to develop and deliver transformative therapies for patients with unmet medical needs.

The Caregiver Action Network invites rare disease patient organizations around the world to link to the new website.  As John Schall, CEO of CAN, explained, “The new website is focused only on caregivers, not on patients.  Disease-specific organizations are the real experts for information on a host of rare diseases like Pompe’s, Tay-Sachs, Huntington Disease or Gaucher’s, for example. We welcome partnerships with rare disease organizations and patient groups so that we can help them by providing resources solely directed towards the caregiver of a loved one with a rare disease.”

Read the FULL press release from Caregiver Action Network.

Visit the Rare Caregivers web site!

[March, 2014]

12 Days, 12 Ways to Care for a Caregiver

For the last 12 days of December, 2013, we counted the days down with ~ 12 Days and Ways ~ to Care for the Caregiver.  Below are direct links to each post for your reference:

For more resources on Caring for a Caregiver, visit the Caregiver Action Network for 10 Tips for Family Caregivers as well as Family Caregiver Toolbox.

[December, 2013]

Caring for the Caregiver

At some time or another, we all wind up being a caregiver for someone.  Sometimes for a day or two, but sometimes for years - whether it is an elderly parent or a seriously ill child.

A Caregiver’s Bill of Rights
by Jo Horne

I have the right:

Twenty Ways to Care for Caregivers

The below ways to care for a caregiver were promoted in celebration of the NNPDF's 20th anniversay ~ 2002-2012.

Many times friends, neighbors, other family members will say "call me if you ever need anything".  Well take them up on those offers!  Call someone and ask them to get you a gallon of milk, or to pick up the dry cleaning or to sit with your loved one while you jump in the shower.  You will quickly determine who will help and who will not.  You also will quickly find out who will be willing to sit with your loved on and who will run errands to help you.  Some people aren't comfortable being around "sick" people, so ask those people to run errands for you.  Many times people want to help, but just don't know how.  Swallow your pride and the thinking that you can do it all; ask for the specific help.  You will be surprised how much better you feel just by delegating the little things.

The above was originally posted by NNPDF Family Member, Jill Flinton on her Blog ~ November 9th, 2012 ~



The Centers for Medicare and Medicaid Services (CMS) has announced the launch of a new web site designed to provide support for caregivers. While the site focuses on caregivers of adult recipients of Medicare, much of the information is also useful for parents and others caring for children who have disabilities who are covered either by Medicare or Medicaid. 44 million adults provide such unpaid care for children or adults! The new site address is There is also an electronic sign-up for an e-newsletter for caregivers.


Web-based Resources:


Cate Walsh Vockley, MS, CGC


Includes all the tasks involved in raising a child. Parenting begins even before the child is born or adopted and may last until the death of the parent or child. Parenting is a part of the family relationship.

Caregiver Burden

The physical, emotional and financial costs of providing care, usually as they are felt or understood by an individual or individuals. These correspond with the amount of medical or behavioral problems in the individual requiring care (typically there  is more stress when things change or symptoms are exacerbated). Whether a person has certain caregiver skills influences the level of burden felt by the caregiver – active coping skills and management strategies help. Support and involvement of others help.

What Is Stress?

Eustress: “good” stress that energizes psychologically and physically, and motivates

Distress: reaction to something that pushes us beyond our level of coping

Stages of Stress

  1. Alarm Stage
    1. Mobilizing energy: causes the carer to become energized
    2. Fight or flight – work to resolve the issue or run from the issue
    3. Usually involves a short amount of time – if resolved, things return to the normal state, if it lasts a long time or is not resolved, the situation moves to the next stage.
  2. Stage of Resistance
    1. Consuming Energy: uses energy
    2. Usually occurs over a longer time frame. If it continues, how the individuals think and feel about the cause of the stress changes (“I can deal with this” -  the stress is managed, OR illness results
  3. Stage of Exhaustion
    1. Draining energy
    2. Illness results --> stress management intervention and/or medical help are usually needed

Effects of Stress on the Body

Stress--> Adrenaline released --> increased blood pressure and heart rate --> Muscle tension --> headaches, shaking, aches and pains --> Upset digestive system --> sickness, diarrhea, constipation, stomach cramps, etc. --> Changes in breathing pattern --> breathless, hyperventilation, chest pains --> sweating, tension, sleep problems, etc….

Self-assessment – AM I STRESSED?

NOTE: Any of us may experience some of the above feelings during stressful periods in our lives. However, if a care giver finds he or she is experiencing many of these characteristics, or if they continue for prolonged periods of time, help from someone outside the situation is essential.

  1. Do I ever find myself trying to do it all and be responsible for all aspects of the caregiving?
  2. Do I ever experience sleep disturbances, including the inability to fall asleep or stay asleep? Do I wake early and lay in bed dreading the day ahead? Do I experience restlessness so that even if I get a chance to rest and relax, I can’t?  Do I have an increased reliance on alcohol to relax, pills to sleep, tranquilizers to calm down?
  3. Do I have trouble getting out of the bed to start a new day?
  4. Do I frequently experience aches and pains, including muscle aches or tightness, neck aches or headaches? Do I experience stomach or digestive problems without a specific cause? Do I have increased outbreaks of bursitis, arthritis, or other ailments?
  5. Do I have difficulty concentrating, increased forgetfulness, or experience numerous small accidents? Do I have trouble carrying out normal daily activities? Do I have difficulty making decisions?
  6. Do I say to myself “I Should be able to…,” “I can never…,” or similar statements?
  7. Do I get frustrated by something I am unable to change?
  8. Do I experience chronic health problems, migraines/headaches, and/or experience low energy or exhaustion?
  9. Do I resist asking for and receiving help from others? Have I developed a fear of others, “can’t be bothered” about others, or do I blame others for everything?
  10. Do I feel that my family has no idea what I must go through and do they simply not understand?
  11. Do I experience emotional outbreaks, mood swings or weepiness, including anxiety, depression, anger, guilt or loneliness?
  12. Do I still see my friends, go to church, enjoy social events or entertainment?
  13. Do I drink, smoke, or comfort eat more?


A Caregiver’s Bill of Rights by Jo Horne

I have the right:

What to do when you can’t remove the stressor?

Change to be proactive – don’t wait for the cause of the stress to happen. Be educated; know what to expect as the situation moves forward, whether it’s information about a progressive disease, an upcoming event, or a relationship.

Twenty Ways to Care for Caregivers

General Resources

  1. Educational support, especially focused on behavioral management
  2. Consider individual and/or family counseling if there are significant difficulties in dealing with the stress of being a caregiver.
  3. Support groups
  4. Anticipatory guidance regarding grief and loss
  5. The 36 Hour Day: A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life by Nancy L. Mace, Peter V. Rabins


The Relaxation Response by Herbert Benson, M.D. Page 162 tells you how to meditate:

  1. Sit quietly in a comfortable position.
  2. Close your eyes.
  3. Relax your muscles, beginning at your feet and progressing up to your face.
  4. Breathe through your nose. Become aware of your breathing. As you breathe out, say the word "ONE" (or a focus word or phrase rooted in your belief system), silently to yourself. For example, breathe IN...OUT, "ONE"; breathe easily and naturally.
  5. Continue for 20 minutes. Try and finish without an alarm; take your time standing up.
  6. Practice makes perfect. If you find your mind straying, gently pull it back and repeat "ONE." Wait two hours after meals to meditate since digestion seems to interfere with the Relaxation Response.

Practice this once or twice a day, or whenever you feel particularly under stress, for example, at the onset of a migraine.

Role of the Family Practitioner and/or Internist

Someone you should know about your caring role – YOUR physician!

Respite Care Resources

Factors Causing Stress

(from a UK survey – will be very dependent on timing of the questions in relation to when the diagnosis was made)

The concerns fall into several categories:

  1. Parents
    1. Child’s comfort, pain
    2. Child’s enjoyment of life
    3. Guilt
    4. Public reactions
    5. Responsiveness of health care professionals
    6. Everyday frustrations
  2. Relationships with professionals
    1. Dissatisfaction with how diagnosis was communicated
    2. Quality of relationship with primary care provider
    3. Dis-coordination of care
  3. Issues relating to family and friends
    1. Lack of respite care/isolation
    2. Treatment of siblings
  4. Child-centered issues
    1. Communication
    2. Lifting
    3. Administering medications and therapies
    4. Safety
    5. Socializing
  5. Level of support
    1. Inadequate financial support
    2. Difficulty in identifying resources
    3. Need for duplicate reporting of personal information (the same forms for numerous agencies)
    4. Assistance with adaptations need for child (financial and technical)
    5. Limits on respite care
  6. Employers
    1. Issues related to need for numerous absences to care for the child
  7. Practical problems
    1. Transportation
    2. Education