A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Friday, November 9, 2012

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
  • 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.

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