I'll begin by giving a bit of data on the subject from online sources.
Since choosing the three greatest struggles is a subjective matter, I
will then approach the issue with a view from my personal stance as an
individual who has been both a caregiver and the recipient of care.
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In 1997, the National Family Caregivers Association surveyed 1000
caregivers. These were the top difficulties reported by the
caregivers:
33% say that it is difficult to have the responsibility to make major
life decisions for a loved one.
36% say that it is difficult to lose personal and leisure time.
43% say that a sense of isolation and lack of understanding from
others was one of the main difficulties of caregiving.
76% say that the most difficult thing is getting no consistent help
from other family members.
Living with Quality: Statistics
http://www.livingwithquality.com/Caregiver%20statistics.htm
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Signs of Caregiver Stress
Denial about the disease and its effect on the person who's been
diagnosed. (feeling that your loved one will get better)
2. Anger at the person with Alzheimer's or others; that no effective
treatments or cures currently exist; and that people don't understand
what's going on.
3. Social withdrawal from friends and activities that once brought
pleasure. (not attending clubs, or social groups, or returning phone
calls from friends)
4. Anxiety about facing another day and what the future holds.
5. Depression begins to break your spirit and affects your ability to
cope.
6. Exhaustion makes it nearly impossible to complete necessary daily
tasks.
7. Sleeplessness caused by a never-ending list of concerns.
8. Irritability leads to moodiness and triggers negative responses and
reactions.
9. Lack of concentration makes it difficult to perform familiar tasks.
10. Health problems
Personal Page of Gail Rohde: Caring for the Caregiver
http://www.geocities.com/rohdegal/
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Here is a page with some excellent links to online caregiver support
sites:
Provon: Caregiver Support
http://www.provon.com/support.htm
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My Google search strategy in locating the above information included
various combinations of the search terms "caregiver," "caregivers,"
"struggles," "difficulties," "problems," and "issues."
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Now for the matter of selecting the three most important struggles.
I am in a position to have viewed the diffuculties of caregiving from
three distinct angles. I was the primary caregiver for my elderly,
bedfast father at the end of his life; I observed and interacted with
the professional caregiver who assisted my brother during several
long, hard years of a progressive autoimmune illness; and I am now
virtually housebound myself, being cared for by my husband as I fight
my own losing battle with autoimmune disease.
Being a caregiver is one of the most physically and emotionally
grueling tasks that any human can undertake. Here are my choices for
the three most important struggles that face today's caregiver:
1. The struggle against fatigue.
2. The struggle against depression.
3. The struggle to maintain normal social and family relationships.
I'll elaborate on these issues.
-- FATIGUE --
Fatigue is, I think, the number one enemy of the caregiver. The
demands of bathing, feeding, and lifting an adult are considerable,
particularly if (as is often the case) the caregiver is no longer
young of body. In dealing with patients who suffer from dementia,
actual physical struggles are not uncommon, and it can be exhausting
to try to defend one's self from someone while trying desperately not
to injure the person who is attacking. Many caregivers work from sunup
to sundown with few breaks, and sleep during the nighttime can be
difficult and fitful, since there tend to be frequent interruptions
related to the patient's needs.
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-- DEPRESSION --
The emotional toll taken by the caregiving experience can be very
heavy. Situational depression (and the flip-side of depression,
anxiety) can seize control of the strongest mind from time to time.
The struggle to stave off depression is an ongoing war between the
caregiver and his or her own dark feelings:
Guilt (for not doing enough, for becoming impatient, for sometimes
feeling disgust or horror regarding the patient's infirmities.)
Sadness (a melancholy sense of hopelessness and powerlessness in the
face of suffering and death.)
Anger (frustration with the patient's moods and behaviors, sometimes
rage at medical science or even at God himself for permitting the
patient's condition to worsen.)
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-- MAINTAINING SOCIAL AND FAMILY RELATIONSHIPS --
One of the worst of the struggles faced by the caregiver of today is
the fight to have a life of one's own. In times gone by, entire
families cared for their own when illness struck. Modern times have
brought many changes, and one of the most drastic is that caregivers
who take care of family members often do so alone, with little or no
assistance from relatives. It is extremely difficult to carve out the
time to do anything outside the confines of the sickroom, and romantic
relationships are out of the question. There is no easy answer to
this; battles to seize a few free hours here and there may be won, but
the war continues. In cases where a parent is being cared for,
disputes among siblings are very common, with one sibling taking the
lion's share of the responsibility, while the others refuse to
shoulder their portion of the burden, even on a temporary basis.
Resentment and feeling like a martyr are not uncommon reactions among
caregivers who find themselves chained by duty, unappreciated by their
families, and isolated from their peers.
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I hope this is helpful. If you need further explanation, or if any of
the links do not function, please request clarification before rating
my answer.
Best regards,
pinkfreud |
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