Bess’ Alzheimer’s disease has progressed to
late stage. She lives with her husband, Don, in a
small town. They have four adult children, three of
whom live several hours away and one who lives
across the country, who are anxious and unsure
of what to do as their mother continues to
decline. It is time for a family meeting, but
where do they start?
A family meeting to discuss how to best handle
a loved one’s declining health has the potential
to build bridges or create divisions among
family members. A guide, SOAR, offers points for family
members to discuss and items to facilitate
decisions. This valuable and easy tool provides
structure for conducting the family meeting. SOAR is an acronym for Synchronize,
Organize, Analyze, and Recognize.
S = Synchronize
The first step in holding an effective meeting
is to get all family members involved, meaning
that everyone must be present. Getting people
together can be tough and as difficult as it may
be to balance everyone’s schedules, this is a
vital first step. Having a clear purpose, a convenient time
and location, and an attitude of teamwork
motivates people to attend.
Since distance can be an obstacle, explore
creative options. For example, if Bess’ out of town
daughter cannot meet with the family in person,
she can still participate via a phone or
internet conference.
Whether or not the loved one participates
depends on his or her current medical condition.
The loved one has the right to make their own
medical decisions unless incompetency or
dementia interferes. As Bess’ mental capacity prohibits her
participation, Don hires a caregiver for the
meeting.
Bess’ family meets at a friend’s house where
the out-of-state daughter can be contacted by an
internet conference website. Their meeting
begins by reviewing Bess’ current mental and
physical status. This summary gets the entire family “on
the same page.”Next, they decide what topics to address. Limiting topics and taking the time to
get consensus may make it necessary to hold
several family meetings.
Ideas for topics include: personal care,
finance/bills, transportation, cleaning,
groceries/food, legal issues, doctors’
appointments, community resources, safety,
emotional support and housing. Discussing everyone’s expectation creates
an atmosphere of honesty and a willingness to
listen to each other. Though this discussion may produce
awkward and uncomfortable feelings for some
family members, it helps to acknowledge and
accept their feelings.
Written communication is vital, so notes
should be taken and sent to everyone.
O = Organize
Categorizing is the next step. Who is doing
what? What needs to be explored?What deadlines need to be established?
Other good organizational questions to discuss
are: What are our options? What do we need to
know? What if (fill in the blank) happens? What can each of us contribute?
Who else needs to be involved?
How will daily schedules, holiday and
emergencies be handled? Talking in advance about difficult
situations will lessen future problems and
clarify communications.
Emotions may be fragile as sensitive issues
are discussed. Remember organizing provides structure,
not ownership. All decisions should be flexible and
considerate of all involved.
Designate a note taker to record how tasks are
divided. If one person is taking on too many
assignments, this will be clear to see in a
written summary. Or is that okay with that person? Sometimes it is helpful to have one
person in charge as the coordinator, but
openness is necessary about this issue. What if that person makes a decision not
all agree with? Talking ahead of time will reduce
problems later.
In Bess’ case, the three siblings who lived
closer each offers to take a day a week to give
their dad a break. The daughter who lives across the country
volunteers to pay for the home-delivered meals
as her contribution. They exchange key phone numbers such as
cell and work numbers and agree to back one
another up if scheduling conflicts arise. The family plans a second meeting to
visit area Alzheimer’s units with Don. This way, if that option is needed, the
family will know the area’s resources.
A = Analyze
Coming to consensus on decisions is not always
easy. Gaining factual knowledge and recognizing
things will not always run perfectly is a good
start. Agree ahead of time that everyone will
try to work together and acknowledge that
adjustments will have to be made. Analyze and reassess the planning as the
situation progresses.
Assess how the skills of family members are
being used. For example, having someone in the family
with a healthcare background can be beneficial.
This person may know community resources and the
right questions to ask. What frequently happens, though, is other
family members rely on that person as the
expert. Health care providers understand and
know the medical system, but are also
emotionally involved and may need additional
emotional support.
Evaluate if all family members have been
included. Sometimes in-laws or “significant
others” are uncomfortable in participating, not
understanding how much they should speak up.
They may have wonderful skills to offer.
R = Recognize
Recognize the emotional factors that underlie
all family meetings. These meetings can be a powder keg
waiting to explode. Remember family members will be at
different places emotionally. One may have
territorial feelings. “I am the daughter, I have
to do everything!”Some may feel frightened or uncomfortable
at the prospect of caring for a sick person.
Respect the other person’s right to express
feelings, even to say no. If the tension becomes
too great, bring in a third party, such as the
social worker or a minister, to facilitate the
discussion.
Acceptance of her mother’s current condition
by one of Bess’ daughters slows down decision
making by her family. After consulting with Bess’ physician,
this tension is eased by reminding her to
“remember what the doctor recommended.”She is now better able to accept the
planning.
Many difficult relationships arise out of misunderstandings and miscommunications.
Using effective communication techniques
diffuses the potential powder keg of
disagreements. The use of “I statements” and
empathetic listening are two communication
skills that strengthen relationships.“I statements” focus on how the speaker
is feeling and does not judge the other person.
For example, the speaker says, “I feel nervous
when…” instead of “You should be doing…”
Listening with empathy to each person
expresses the desire to understand how the other
person is feeling.“Let me listen and help me understand
what you are feeling.”Many times if a person feels that he or
she is heard and someone recognizes their
feelings, they are willing to cooperate and help
with the problem affecting his or her personal
feelings.
The grieving process with all its emotional
stages– anger, denial, etc., is already
happening. Give people time to digest what is
happening and realize that everyone is dealing
with deep emotional turmoil and changing roles. Listening and forgiveness decreases the
emotional impact for family members.
Family meetings are an effective means of
discussing difficult topics. The stress and
confusion in Bess’ family lessened after a
series of meetings to clarify issues and to
create a plan of action. Instead of a family falling apart due to
the tension, misunderstanding, and
miscommunication, a family can SOAR. SOARing creates the atmosphere for
openness to discuss the full range of topics to
best plan for the care of a loved one.
Jean Wise is an RN who has worked with caregivers as a public
health nurse. She is also a freelance writer and speaker at retreats,
gatherings and seminars. Find out more at her website:
www.jeanwise.org