Provided by: Cherie C. Binns RN BS MSCN
Since MS is
such a variable disease, needs are constantly changing. Ongoing family
conversations are therefore going to be needed. Whenever there is a significant
change in disease course or function, or if there is a change in the family
that will impact family roles, another conversation needs to happen.
Be honest about
your feelings and assumptions and respect the feelings and opinions of others,
even though you may not understand or agree with them. The person with MS may
have thought the family would always be able to do whatever needed to be done,
whether it was administering medications, running errands, cleaning house, or
providing hands-on assistance. But situations can change as children move away
or a spouse’s health declines. In the same way, family members might have
assumed that they would always be able to meet all of their loved one’s needs.
But unanticipated life events, career demands, or failing health can become an
issue.
The following
questions should be addressed by all members of the family when the current
care plan is becoming more difficult and there is recognition that some
problem-solving is needed:
1. How is the family
member with MS doing right now? What’s working? What isn’t?
2. What are his or her
medical needs? Personal care needs? Who is doing what? Is any change
anticipated?
3. Is the person with MS
receiving good clinical care and experiencing good quality of life?
4. How are other family
members doing? Are there new or additional things causing stress? Are they
being handled?
5. How much do we know
about community resources that might be able to help us?
6. Do we have a clear
understanding of the financial resources we have to work with?
When
Conversations are Difficult
When
conversation about changing care needs occurs, everyone affected may share a
variety of feelings and opinions. Not everyone may agree on what needs to
happen next. Simply acknowledging that the discussion is difficult for everyone
is a good way to start. Recognize that you are working together to reach the
best possible solution. Sometimes emotions can interfere with communication, so
encourage each other to speak calmly about the matters at hand. Setting some
ground rules before the conversation begins can help too. Let everyone have a
turn to express his or her thoughts. Try not to interrupt. If you don’t
understand something, ask for clarification when the person finishes speaking.
If, despite
your best efforts, a mutually-agreeable decision cannot be reached, consider
asking for outside help. A care manager is useful to identify resources and
offer suggestions that might not have been considered. Enlisting a social
worker, clergyman, or family therapist to assist in the process can improve
communication and understanding. Perhaps individual counseling is the best
option for those struggling to cope with stress and emotions.
Local professionals
can be located by contacting a MS membership organization or reaching out to
your state’s psychological association at www.apa.org/.
There are
certain times when these family conversations are most likely to be triggered.
One is when the family realizes they cannot do it alone and that more help is
needed at home. Another is when a move to a more supportive housing
alternative, such as assisted living, may be necessary in order to assure
safety and maximize the independence of the person with MS. A third is when
24-hour skilled care in a nursing home setting might be necessary.
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