Home > Spring 2010 Newsletter |
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Keeping Caregiver Families Together
L et’s face it, families are complex systems, and when
you factor in caring for a person with dementia
(PWD), things can get really dicey. But what
determines if a family remains “intact” and collectively
joins together to share caregiving responsibilities or
splinters apart? This question (in addition to many others
regarding family support and commitment) is examined
during the family caregiver training workshops which I
conduct each month. The truth is, no simple answer exists.
But certain issues tend to challenge the functioning of the
family unit.
Issue #1 — Redefining Roles. It is a fact: roles
change after a parent, spouse, sibling, or other family
member is diagnosed with dementia. Accepting that the
relationship is different and being able to transition into
new roles and/or receive help from other family members
or community services — such as primary caregiver,
primary wage earner, driver, or bookkeeper — is key,
although difficult. What makes this process somewhat
easier is the family’s ability to adapt to change, seek
information, utilize the information in a timely manner
and effectively problem-solve and establish new patterns,
rather than remain in a state of paralysis.
Issue #2 — Controlling the Torrent of Emotions.
“What do I do? Everyone in the family has different
opinions about the ‘right’ course of action and they are
driving me crazy!”
Caring for a PWD requires juggling a lot of emotions.
Denial comes into play as well as anger and depression.
Every family member experiences different emotions and
it is often difficult getting everyone on the same page
about how to handle the PWD’s challenging behaviors
and health issues, or whether the PWD should live on his/
her own or have assistance. Keep it cool: fighting with
others will not lead to desired outcomes and decisions
need to be reached. Call a family meeting; list pros and
cons for each situation. Try to reach a consensus by really
listening to others and being open-minded. Being flexible
is critical to successful outcomes.
Issue #3 — Being Prepared. Come to a consensus
early on about legal and financial matters (if you can).
Address critical issues related to legal and financial matters
now rather than later. Although it requires some difficult discussions and decisions, it is worth tackling these topics
now rather than coming to a decision during a time of
crisis, when family members are experiencing high levels of
stress. Make certain that the PWD appoints a Health Care
Proxy and Power of Attorney. If the family cannot reach
a decision, consult with an Elder Care Attorney, attend
a Legal/Financial Workshop at the Association, or seek
family counseling (available through care consultation at
the Association or referrals from our 24-hour Helpline).
Issue #4 — What if No One is Willing to Provide
Any Support? We can’t change personalities and family
roles overnight. Some people are not capable of being
caregivers for a variety of reasons. It is okay, but we need
to realize who is capable of providing support or if it is
time to seek help elsewhere. Some family members may
prefer to relinquish direct caregiving responsibilities but
can help manage financial affairs and everyday errands.
Others simply cannot handle the changes in the family
structure and totally remove themselves from the situation,
leaving other family members to shoulder the brunt of
the caregiving responsibilities. Why does this happen?
Looking at the family’s history is often telling, although
not always. Sometimes family members have had fractious
relationships with the PWD or people cannot face caring
for someone who always had cared for them. Sometimes
there are no real answers to why family members act the
way they do in the time of crisis.
Issue #5 — Accepting the Situation. Coming
to terms with the situation is difficult and does not
happen overnight: it is a process. Letting go of anger and
resentment will allow you to move forward and resolve
the many issues each family faces when caring for a PWD.
It is not easy but the Alzheimer’s Association is here to
help.
If you are interested in additional resources pertaining
to family mediators, care consultation, senior day
programs, food delivery, home health aide services,
counselors or educational programs (Family Caregiver,
Legal and Financial, Easing the Transition Into a Nursing
Home, Medicaid), contact our 24-hour Helpline at
1-800-272-3900.
— Amy Trommer
Dementia Care Trainer
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