Myasthenia Gravis - The Resource

 

***INFO

Jim Lubin's disability resourcesHealth Links Select Site

 

Caregivers

 

  This section is dedicated and devoted to those people that take care of the myasthenic patient. You are among a large group of family members and friends that provide some type of support for someone with a chronic illness. You are special, as you have had to be patient and kind, caring, considerate, adaptive and unselfish.

Some interesting statistics:

 

  • Estimates of the percentage of family or informal caregivers who are women range from 59% to 75%.
  • The average caregiver is age 46, female, married and working outside the home earning an annual income of $35,000.
  • Although men also provide assistance, female caregivers may spend as much as 50% more time providing care than male caregivers.
  • 33% of working women decreased work hours
  • 29% passed up a job promotion, training or assignment
  • 22% took a leave of absence
  • 20% switched from full-time to part-time employment
  • 16% quit their jobs
  • 13% retired early
  • As many as two out of three older women do not take advantage of preventive health services due to lack of information and high out-of-pocket costs.
  • 25% of women caregivers have health problems as a result of their caregiving activities.
  • Coronary heart disease (CHD) is one physical risk factor of caregiving. Women who spend nine or more hours a week caring for an ill or disabled spouse increase their CHD risk twofold.
  • Other health effects include elevated blood pressure and increased risk of developing hypertension; lower perceived health status; poorer immune function; slower wound healing; and an increased risk of mortality.
  • Additionally, compared to non-caregiving women:
  • 25% (vs. 17%) rated their own health as fair or poor
  • 54% (vs. 41%) had one or more chronic health condition
  • 51% (vs. 38%) exhibited depressive symptoms
  • 16% (vs. 8%) were twice as likely in the past year not to get needed medical care
  • 25% (vs. 16%) had difficulty getting medical care
  • Daremore Quotes

    Caring for another person with a health condition is challenging, to say the least. In the case of the myasthenic patient, the level of care varies from day to day, sometimes minute to minute. For a stabilized MG'er, the care may only be needed during follow up doctor visits. For the stabilized MG'er, concerns may only arise during unusual circumstances and monitoring their activity level. For the newly diagnosed or unstable patient with myasthenia gravis, caregiving takes on a new turn as care can mean anything from making sure they breathe in the middle of the night to bathing and feeding.

    You're angry. You're sad. You feel helpless. You feel out of control. You are resentful. You are NORMAL. All these emotions are very NORMAL for a caregiver and you need to find a way to get rid of the guilt that normally associates itself with these feelings. Communication is the key. If you can discuss your feelings with the one that you are taking care of, that's the number one priority and healing advice (they feel guilty, too, that you are being burdened with their care). If you cannot speak to them due to their disability, emotional level, etc. then please find a support group. There are thousands of people JUST LIKE YOU out here, going through similar experiences. Share that. Get some feedback. Get advice. Don't be afraid to reach out.

    1. Family Caregiver Alliance
    2. Information for caregivers from Medline
    3. Caregivers USA
    4. Christian Caregivers
    5. The Center for Family Caregivers
    6. Empowering Caregivers
    7. National Organization for Empowering Caregivers
    8. Caregiver Credit Campaign
    9. Care Givers Count
    10. InteliHealth article on care giving
    11. National Alliance for Caregiving
    12. Caregiver.com
    13. Caregiving and Family Harmony
    14. 4Therapy Network - nice resource
    15. Caring for Care Givers
    16. Everyday Warriors
    17. National Family Caregiver's Association
    18. The Caregiver's Advisory Panel
    19. The Cost of Caring - article from BeliefNet

     

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