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Caregivers
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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
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.
- Family Caregiver Alliance
- Information for caregivers from
Medline
- Caregivers USA
- Christian Caregivers
- The Center for Family
Caregivers
- Empowering
Caregivers
- National Organization for Empowering
Caregivers
- Caregiver Credit Campaign
- Care Givers Count
-
InteliHealth article on care giving
- National Alliance for Caregiving
- Caregiver.com
-
Caregiving
and Family Harmony
-
4Therapy Network - nice resource
- Caring for Care Givers
-
Everyday
Warriors
- National Family Caregiver's Association
- The Caregiver's Advisory
Panel
-
The Cost of Caring - article from BeliefNet
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