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Table of Contents
Figure 2
What Doctors Can Do To Help Partners/Caregivers
Recognize the burden placed on partners and offer appropriate support
Encourage partners to be present during appointments
Address partner concerns in addition to patient concerns
Assess the partner/caregiver's needs separately from the patient
Provide information on support to the partner
Figure 3
Signs Of Caregiver Burnout
Withdrawing from friends and family
No longer participating in activities you enjoy
Feeling helpless and hopeless frequently
Getting upset more quickly than usual
Loss of appetite
Altered sleep patterns
Getting sick more often
Feeling like you can’t take it one more day
Fantasizing about escape
Feeling you want to hurt yourself or the person you are caring for
Source:
www.searchforcare.com
Figure 4
Resources For Caregivers
www.caregiver.org
www.helpguide.org |
[Ed. Note: Over the course of the last year, several readers
have requested more information on how Chiari and syringomyelia affect not
just the patient, but their spouses and families in general. In
response, we are launching a series called Family Impact. Given
the limited research on CM/SM, there is not much directly written about how
these conditions impact family life; however, much can be learned from
research into the impact of chronic diseases in general and specific
diseases - like MS, which are similar to Chiari and syringomyelia - in
particular. Since the topic is new to many people, we will not limit
ourselves to recently published research, and like the source for this
article, will reach back to provide information that is relevant and useful.]
Although the impact of pain and disease on a
patient's quality of life is an area of active and ongoing research, less
attention has been paid to how a chronic disease affects the partner of the
person afflicted. Some insights, however, can be gleaned from research
into caregivers of chronically ill people. It is reasonable to assume
that many partners become a caregiver to some degree, whether it is taking
on extra chores around the house, assisting with medical issues directly, or
going to work to make up for lost income.
With this in mind, Dr. Jonathan Rees and colleagues
published a review of how chronic illness impacts a partner's quality of
life in the November, 2001 issue of the Journal of the Royal Society of
Medicine. In highlighting the importance of this topic, Rees points
out that studies have suggested that many partners/caregivers actually
report a lower quality of life than the patients themselves.
Research focused on the care of the elderly has clearly
shown that caregiving has a serious impact on quality of life. In
various studies, caregivers have been shown to suffer from increased stress,
anxiety, depression, decreased social life, and even worsening physical
health. A study by Kornblith found that the wives of prostate cancer
patients reported greater psychological distress than their husbands.
A study by Weitzenkamp showed that the spouses of spinal cord injured
persons had higher levels of depression than the patients themselves.
The burden of care is not just psychological either. Research has
shown that the added stress and anxiety can lead to loss of appetite,
disrupted sleep, and a generally lower level of overall health.
Rees points out that partners/caregivers are faced with
many challenges and difficulties (see Figure 1). These include
everything from extreme financial difficulties, to dealing with the changed
relationship with their spouse, to the physical toll the added burden can
bring. In addition to the extra work that a partner may be doing, the
psychological stress of worrying about the future and whether their loved
one is hurting and in pain can be difficult to handle. Adding to the
problem is a sense of social isolation that overcomes many partners.
Even if they have the time and energy to go to social functions - such as a
neighborhood gathering - they may not want to go alone. This can lead
to withdrawal and social isolation, increased feelings of having to do
everything themselves and adding to the psychological burden.
Research has shown that a number of factors influence
the impact a chronic illness has on a partner, including factors involving
the caregiver, the patient, and the situation itself. Some research
has shown that women suffer more of an impact than men, and younger women in
particular. Also caregivers who live alone with their partners and
families with lower incomes are especially susceptible to the burden of a
chronic illness.
In looking at the patient, somewhat surprisingly, it is
not clear if there is a link between the severity of the illness and the
impact it has on the partner. Some research has found such a link,
while other research has reported the opposite. There is also research
suggesting that the mental health of the patient may be more important than
their physical health in predicting how much of an impact it will have on
the partner.
It appears that the type of care required also
influences the impact on the partner. Extra, impersonal chores, such
as shopping, are often perceived as less of a burden than if the care
required is personal in nature, such as feeding or bathing. In
addition, restrictions brought on by the situation, such as needing to be
home most of the time, can increase the negative impact on the partner.
Given all the negatives discussed so far, it may be
hard to believe, but many partner/caregivers actually report positive
aspects their situation. Some people report finding a new meaning to
life and an increase in self-worth and self-esteem. In addition, some
people report that they feel closer to their spouses as a result of the
situation and that the situation has made them a more caring person in
general.
Anecdotally, this publication once posed the question
whether anything positive came out of anyone's experience with Chiari or SM.
While some people emphatically stated NO, many people reported that their
experience had changed their views on life, changed their priorities,
changed their relationships, and changed how they interact with people, all
for the better.
Rees concludes his review by recommending that doctors
and clinicians recognize the burden that is placed on partners and caregivers
(see Figure 2) and respond accordingly. Given that the burden can
adversely affect not only the partner's psychological, but physical health
as well, Rees recommends that doctors assess the partner's needs separate
from the patient's and should encourage partners to express their concerns
and points of view freely.
Clearly, the burden of a chronic illness falls not just
on a patient, but on their family as well. Even if someone is able to
mostly care for themselves, a spouse may have to take on extra duties around
the house or with the kids, or even work extra hours to make enough money.
Beyond this, both patient and partner must adjust to what has happened and
how it will affect their life going forward.
Although not addressed in the review by Rees, caregiver
burnout is a recognized phenomenon and caregivers should be aware of the
signs (see Figure 3). Anyone feeling too much stress or anxiety should
seek out help (see Figure 4) or talk with their doctor.
--Rick Labuda
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Key Points
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Most research on the impact of
chronic illness on partners focuses on caregivers and the elderly; however
some of the conclusions are likely valid for diseases such as CM/SM
-
Research has shown that often a
chronic disease has a larger impact on the quality of life of the partner
than the patient
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Partners may suffer from depression,
exhaustion, impaired social life, and physical and emotional distress;
economic hardships are also common
-
Characteristics of the partner,
characteristics of the patient, and the specifics of the situation all
influence the impact on the partner
-
Some partner/caregivers actually
report positive aspects to the situation, such as a new meaning to life and
a closer relationship with the patient
Figure 1
Potential Partner/Caregiver Problems
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Fear of the future
-
Anxiety and depression
-
Worsening relationship with partner
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Reduced or absent sex life
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Fatigue, lack of sleep
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Social withdrawal - unable to attend
social functions, don't want to do things alone
-
Financial difficulties - lack of
income, increased medical costs
Source (Fig1 &2): Rees J, O'Boyle C, MacDonagh R. Quality
of life: impact of chronic illness on the partner.J R Soc Med. 2001
Nov;94(11):563-6.
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