Caregiving & Support

CAREGIVING

Being a caregiver is a big responsibility, and one that doesn’t always get the recognition it deserves. It can be difficult to attend to someone who is physically challenged, and caregivers also cope with the emotional loss that comes when someone they love has changed.  Myasthenia Gravis is characterized by fluctuating muscle weakness of the voluntary muscle groups, which means that one day the person living with MG may be able to accomplish the activities of daily living and the next day they may not.  However frustrating for the person living with MG, it can be just as frustrating for the caregiver….not knowing what to expect, how much to help and how much to allow your loved one to do for themselves.  As always, communication is the key!

It’s normal for caregivers to experience a range of feelings that include frustration, sadness, and anger, as well as the good feelings that come from helping someone you love.

Although it’s not always easy to remember, as a caregiver your first responsibility is to care for yourself. It’s both unwise and unhealthy to keep filling someone else’s cup while leaving your cup empty.

Focus a portion of each day on doing some small activity that refreshes you, whether it’s reading, being outdoors, listening to music, talking with a friend, or some other activity you enjoy.

If care of your loved one becomes extreme or time-consuming, at least once a week, ask trusted friends or family to take over with caregiver responsibilities so that you can have time to yourself. If you can afford it, or your insurance provides coverage, you might consider bringing in a part-time professional nurse or nurse’s aide. However you schedule it, try to schedule a block of time each week that’s just for you.

CAREGIVING RESOURCES

Well Spouse Association www.wellspouse.org

National Alliance for Caregiving www.caregiving.org

Turning Point, The Center for Hope & Healing www.turningpointkc.org

Strength for Caring: A Place for Caregivers www.strengthforcaring.com

National Family Caregivers Association www.thefamilycaregiver.org/index.cfm

Handbook for Long Distance Caregivers www.caregiver.org/caregiver/jsp/content/pdfs/op_2003_long_distance_handbook.pdf

Caring from a Distance www.cfad.org

MedlinePlus www.nlm.nih.gov/medlineplus/caregivers.html

2-1-1 – To find out what your area offers locally, pick up the phone and dial 2-1-1, a service offered by the United Way, which will connect you to local resources for respite care and more.

Caregiving Online: www.caregiving.com Wellness for Caregivers of an Aging Relative, Friend or Neighbor.

Today’s Caregiver www.caregiver.com

OFFERING SUPPORT

Often the most difficult part of living with MG is the lack of understanding the person encounters.  Since they don’t always look sick to us, we find ourselves struggling to believe their limitations are real.  Even when our friend or family member tells us they are unable to work, attend a gathering, shop, cook, clean, etc., we often disregard what they are saying, because we think they look fine!  Let’s face it; most people cannot comprehend what it is like to be sick or in pain for weeks, months or even years, because we are used to going to the doctor, taking some medication and soon feeling better.  Consequently, unless we are educated about what life changes a chronic condition can bring, we may inadvertently treat our loved one as if they just need to “snap out of it” or “stop complaining.”  As a result, the only way to transform our well-meaning, but hurtful view is to understand that the illness can debilitate a person’s body – against the person’s will!

Your friend or family member’s illness may have to undiagnosed or misdiagnosed for a very long time, leaving them frustrated, discouraged and without answers to why their bodies would not cooperate with their desires.  When they received their diagnosis of Myasthenia Gravis, it may have taken months and sometimes years to regulate the medications.  Many continue to adjust their prescriptions and cope with the side effects for an ongoing basis.  People living with MG vary in the severity of their illness.  Many have mild symptoms and with adjustment in their diet, schedules and medication, they can lead a normal life.  Some have to make bigger changes by avoiding various activities or cutting back their work.  Others are unable to work at all and struggle to get through life’s daily needs.

We all have good and bad days, so it is reasonable to ask your friend or family member how they are feeling.  If it’s a good day, we can be glad for them.  However, for those who feel bad most days, asking them how they are doing, allows them to answer regarding their outlook on life, despite their hurdles.  We all know what it’s like to be ill and even though we can’t stand to miss a few days out of our lives sick in bed, we often treat our friend with MG as if losing long periods of their life should not be any big deal.  Instead of showing them compassion for their losses and frustrations, we often try to tell them it is not that bad.  Offering phrases such as, “Keep a stiff upper lip”, “It could always be worse” and “Think positive” sound supportive, but your friend needs your time and consideration more than concepts.  By listening to their feelings about losses and concerns, we offer them the foundation they need to combat the illness.  We can encourage our loved one by showing them they are still as valuable to us as they were before their diagnosis.