Spring 2008 - International Waldenstrom's Macroglobulinemia ...

PAGE 12
CAREGIVING IN WALDENSTROM’S
MACROBGLOBULINEMIA
by Connie Paul, Ph.D., ABPP
It’s a beautiful winter day here in Tennessee today as I write
this article on the topic of caregivers for the Torch. Ever
since my husband, Bill, was diagnosed with WM in May
2005, our bookcase has a space dedicated for filing the Torch
issues, with their familiar, bright blue covers, together with
other references on WM. We both look forward to reading
the next issue of the Torch, and my husband always asks me
to return it to him to be filed for later use.
When I was first asked to write this article it was difficult to
decide what specific aspect of caregiving to focus on. WM
is a complex disease that may affect virtually every area of a
person’s life including physical health, cognitive functioning,
social roles, psychological well-being, sense of self, family
relationships, work and social environments. Caregivers for
family and friends diagnosed with WM can be called upon
to provide a wide scope of services ranging from, and not
limited to, emotional support, personal care, and household
responsibilities. Caregiving can also affect the physical and
emotional health of the caregiver. It is not uncommon for
caregivers, while providing care for a loved one, to neglect
their own health. Stress for caregivers comes in the form of
worry for a loved one, financial strains, time commitments,
decreased social outlets/contacts, work demands, and
changing roles.
The watch and wait time period recommended by the
treatment team for some WMers adds another dimension to
the caregiver role that is specific to WM. Sometimes it is
hard to grasp that doing nothing, so to speak, is really doing
something good and adaptive. It may seem strange to know
that your loved one or friend has been diagnosed with a rare
form of cancer and has been advised that the best course of
action is simply to monitor the clinical course of the disease
over time. What is a caregiver to do in such a situation?
The first step in providing the best support and care is to
know the personality and propensities of your friend or loved
one. It is never a good idea to deliver supportive and caring
behavior without first knowing if what is offered will be well
received and result in being truly helpful in the context of
the situation. There is a vast range of possible interactions
between patient and caregiver. The frequency and form of
the contacts may vary according to the particular situation,
but whatever form contacts may take, caregiving will be
most effective when the caregiver knows the patient well.
Being well educated about the disease and treatment options
is the next step for the caregiver. It is difficult to support and
care for someone if your information and knowledge base
about the disease are limited. The Torch, the annual IWMF
Educational Forum, the IWMF support groups, and the
IWMF talk-list serve all provide a wealth of information and
resources for learning about WM. Bill and I certainly know
more about hematology than we did three years ago! I have
enjoyed attending the last two Ed Forums, learning more and
meeting new friends along the way. When Bill talks about
something he has read recently or learned on the talk-list, it
is good for me, too, to be able to join in and support him in a
conversation about his new knowledge of WM.
A third step for caregivers is the role of “being there” during
times of deliberation and decision making. An example
would be when treatment options are being weighed. Never
tell the person you care for what they should do and how they
should do it. This leads to misunderstanding or confusion.
A caregiver should allow a process of thinking out loud,
weighing options, providing information, and asking
questions for reflection. In this way the caregiver helps to
find what is best for the individual. And then-and this is very
important-once your loved one or friend determines a course
of action and makes a decision, the role of a caregiver is to
give support, to help with implementation of the decision,
and to provide comfort. The goal becomes getting through
the daily challenges together.
Yet another step for a caregiver is to keep one’s own balance
in the course of taking care of another. Strong coping skills,
resiliency, respite, emotional support, self-care–all are as
important for the caregiver as for the person diagnosed with
WM. All things in nature seem to work better with balance.
At the 2007 Ed Forum in Atlanta I was pleased to be invited
to present a talk on the topic of caregivers. I very much
enjoyed meeting some of you, and I hope those who attended
last year profited from the opportunity to meet each other
and share aspects of being a WM caregiver.
This year I have been invited again to speak on the topic of
the WM caregiver at the 2008 Ed Forum in Los Angeles. I
look forward to seeing some of you again and meeting new
attendees, too. I would appreciate your providing me with
any specific topics you would like me to address during
this year’s WM caregiver presentation. I would be happy to
incorporate your input. You can reach me at: TPAMember@
Juno.com
I look forward to hearing from you!
CORRECTION
The statement concerning predictors of positive responses
to Rituxan therapy, printed on page 7 of the Winter 2008
Torch in the summary of Dr. D.M. Weber’s presentation
at the 4th International Workshop on WM, should be
amended as follows: “Predictors of positive responses to
Rituxan therapy include: a monoclonal protein less than
40 g/L, serum albumin greater than 35 g/L, hemoglobin
greater that 10 g/dL, and a kappa light chain.”