What are the emotional challenges of family caregiving?
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In talking with current and former family caregivers
about these challenges, one gets the distinct impression
that staying emotionally centered throughout the course of
the illness is a near impossibility. One also begins to understand
how the emotional challenges often begin when the
behavioral warning signs emerge before a diagnosis has
been made and before there are significant compromises in
the daily functioning of the symptomatic person. One former caregiver, the wife of a man who was later found to have vascular dementia, talked of her husband having forgotten her birthday, and when this was brought to his attention, he was blank as if this had no meaning to him. |
Other family caregivers talk about the challenge of dealing
with the changes that occur not only at the beginning
but also further along the way. There are the changes in
the relationships within the family and the changes in the
way that everyone gets treated. Often the person with
dementia gets treated like they’re not there, and it is
assumed that they are less functional than they actually are.
Family members are dumbfounded and are, to varying
degrees, in denial, enraged, self pitying, and angry at fate.
They have entered a world not of their choosing, and one
that, try though they might, will not go away.
Changes in the behavior of the person with dementia are
particularly challenging when the behaviors become
increasingly agitated, aggressive and/or socially inappropriate.
These negative behaviors are initially seen by family
members as being conscious actions done on purpose.
Family caregivers report that learning about these
behaviors in the context of the illness’s progression and as
examples of the illness “talking” can be an important step
in beginning to deal with them more effectively.
Because the illness is not as apparent as many other illnesses,
i.e. wearing a cast on a broken leg, the behavioral
changes are often misunderstood, resented and inappropriately
responded to. If family caregivers can learn and
accept that these behaviors are part of the degenerative
manifestations of dementia and not personal attacks or
affronts, their job, in most cases, becomes easier. Expecting
these behavioral changes, preparing yourself, and having
alternate strategies can be most helpful. For instance, if it’s
2 A.M. and the person with dementia wants to go to a former
job site, instead of arguing with the person with
dementia, assure them that before going, it would be better
to have a nice cup of tea. This usually provides enough
of a distraction so that the person with dementia is ready
to settle in at home once again.
Strategies such as the one just mentioned, usually calm
the person with dementia. However, it is most important
for family caregivers to pay particularly close attention to
their own emotions.
Clearly the calmer that the family member is the more
likely these strategies are to be successful. The person with
dementia most often responds best to a soothing feeling
tone and voice quality. However, since the feelings that are
generated by the most challenging caregiving situations are
often intense, it becomes extremely important to identify
them as quickly as possible, and to get the support you
need. This support can come in the form of participation
in a family caregiver support group, in having other family
members share the caregiving responsibilities, and in
consulting with dementia care specialists such as geriatric
psychiatrists who may be able to assist with techniques
combined with a trial of medications if appropriate.
Always know that our care consultants and helpline counselors
are available in person and by phone to assist.
For information and support, please call the Helpline day or night at 800-272-3900, or send us an e-mail at: helpline@alznyc.org.
— Reva Hoffman, LCSW
Director, Clinical Services
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