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Care for the Care Giver

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


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:

  • Caregiving Information You Can Use Now
  • Take Care of Yourself
  • Complex Emotions
  • Family Matters
  • Other Places to Turn for Help

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 12 days of December, 2014, 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.

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:

  • Day 1 ~ Take Care of Yourself Physically
  • Day 2 ~ Don’t Overload Your Daily “To Do” List – Be Realistic
  • Day 3 ~ Give Yourself Permission to Have a Good Cry
  • Day 4 ~ Getting Adequate Rest
  • Day 5 ~ Seeking Professional Help if Needed
  • Day 6 ~ Take a Break Every Day
  • Day 7 ~ Explore Community Resources and Connect Yourself to Them
  • Day 8 ~ Learn Relaxation Techniques to Help Alleviate Stress
  • Day 9 ~ Give Yourself a Special Treat At Least Once a Month
  • Day 10 ~ Regularly Attend With a Support Groups and/or Educational Workshops
  • Day 11 ~ Know Your Limitations
  • Day 12 ~ Give Yourself Credit for All the Good You Do

[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:

  • To take care of myself.
  • This is not an act of selfishness. It will give me the capability to take better care of my loved one.
  • To seek help from others even though my loved ones may object.
  • To recognize the limits of my own endurance and strength.
  • 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.
  • To 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, be anxious 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.

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.

  • Laugh about something everyday.
  • Take care of yourself physically.
    Eat a well-balanced diet.
  • Talk with someone every day. Talk to an objective person when issues arise.
  • Don’t overload your daily “to do” list – be realistic. Don’t “should” on me and I won’t “should” on you!
  • Let family and friends help. Give them printed material on the disorder so they can better understand your relative. Give them a chance. Make specific requests and/or define tasks they can do
  • Give yourself permission to have a good cry. Tears aren’t a weakness, they reduce tension.
  • Exercise. A brisk walk counts.
  • Get adequate rest.
  • Try a bowl of Cheerios and milk before bed to promote sleep.
  • Avoid noisy and/or tension-filled movies at night. The late news itself can add to stress. Skip it.
  • Reduce daily caffeine intake.
  • Get professional help if you feel your support system isn’t adequate or if you feel overwhelmed.
  • Take a break every day, even if it’s only 10 minutes alone in the backyard.
  • Explore community resources and connect yourself with them. Participate in a local support group. SHARE your feelings with family and friends.
  • Listen to music.
  • Learn relaxation techniques, like progressive relaxation (one muscle group at a time, tense for 10 seconds and then relax) (or bubble baths!)
  • Meditate.
  • Regularly attend one or more support groups and education workshops.
  • Give yourself a treat at least once a month: an ice cream cone….a new shirt or dress….a night out with friends….a flowering plant, or just ask for a hug or kiss (more than once a month!).
  • Read your Caregiver’s Bill of Rights (and Today’s Caregiver magazine)
  • Delegate responsibilities.
  • Know your limitations. If you wear yourself out, who will care for your loved one, or for you? Caring for yourself is not selfish!
  • Give yourself credit! Boost self-esteem.
  • Change the way you look at the world (change your perceptions)

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 an NNPDF Family Member, Jill Flinton on her Blog ~ November 9th, 2012 ~

Resources for Caregivers from the Center for Medicare and Medicaid Services:


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.


  • Medicare: federal program for the aged and disabled that provides comparable benefits nationwide
  • Medicaid: Joint federal and state program for low income individuals. Benefits may vary from state-to-state depending on state contributions to the program.

Resources on the Internet:

  • site sponsored by Johnson & Johnson provides resources and information.
  • National Alliance for Caregivers; also check out their Family Caregiver Navigator
  •  Family Caregiver Alliance National Center on Caregiving
    Fact Sheet: Taking Care of YOU: Self-Care for Family Caregivers from the Family Caregiver Alliance
  • resources for caergiver support
  • a multi-year, multi-dimensional campaign to change practices so that family caregivers are routinely involved in planning, decision making, and coordinating care, particularly around transitions in care settings
  • National Self-help Clearinghouse

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.

  • Do I ever find myself trying to do it all and be responsible for all aspects of the caregiving?
  • 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?
  • Do I have trouble getting out of the bed to start a new day?
  • 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?
  • 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?
  • Do I say to myself “I should be able to…,” “I can never…,” or similar statements?
  • Do I get frustrated by something I am unable to change?
  • Do I experience chronic health problems, migraines/headaches, and/or experience low energy or exhaustion?
  • 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?
  • Do I feel that my family has no idea what I must go through and they simply do not understand?
  • Do I experience emotional outbreaks, mood swings or weepiness, including anxiety, depression, anger, guilt or loneliness?
  • Do I still see my friends, go to church, enjoy social events or entertainment?
  • Do I drink, smoke, or “comfort eat” more?


  • – Helping special needs families lighten the load
  • – Family Caregiver Alliance, National Center on Caregiving
  • – National Family Caregivers Association – educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age
  • – A community of parents and professionals who strive to enhance the quality of life for medically complex children and their families.