you are caregiving to a friend or relative with Multiple Sclerosis, you
already know how difficult it can be to manage that care. Services once
covered by health care insurance no longer are available. Managed care
and increased benefit cutbacks in both private and federal health care
agencies have made getting quality care difficult. It is not just the
person with Multiple Sclerosis who is affected by this. Many others
dealing with various diseases and disabilities have found trying to
obtain adequate care, a very frustrating concern. As caregivers, we see
the responsibility to ensure quality care is provided to our loved one
falling more and more of on our shoulders.
are learning through trial and error that what you see is not always
what you get in relation to satisfying health care needs. We have also
been “managing” the care of our family member, or significant other, for
a long time. We are experts. We have learned it behooves us to be
proactive in the health care planning, implementation and delivery of
that care. It is not always easy to know just where to begin or how to
know if what we are doing is the right thing to do.
order to begin, it is beneficial to learn all you can about the disease
and how it’s progression can affect your loved one’s ability to function
independently. This information can be found anywhere. It is best to
start with the primary health care provider who is following the person
with MS. They can help you with a prognosis for the future and perhaps
recommend resources available in your community to assist you. Other
resources include the Internet, public library, care consultant
specialist and magazines such as Today’s Caregiver Magazine that target
caregivers and their specific needs.
Next you need to become aware of the specific needs of the person you
care for. These needs should encompass every aspect of daily living and
not just those specific to the disease.
Here are some of the problem areas caregivers need to consider when
planning care. In doing this it is helpful to consider each area listed
and keep a record of the personal needs of your loved one. This will
help you to track of the progress in rehabilitation or help to show what
problems need to be addressed.
is a good idea to make sure that they have a physical exam every year.
This should include routine screening exams for cancer. For women this
would include mammograms, and pap smears and in men prostrate and rectal
exam. Dealing with problems that MS can bring will be easier if general
well being is maintained. Evaluation of neuromuscular and
musculoskeletal function should also be a part of the yearly exam.
this time it is also a good idea to have a checklist that you can show
the doctor that documents the different levels of functioning and how
they have improved or declined since the last check up.
Neuromuscular checklist includes: complaints of pain and spasticity.
Musculoskeletal function should include monitoring impairment in range
of motion to all extremities, including the joints.
Psychological functioning also needs to be monitored. This is an area
that is often avoided because many people get embarrassed talking about
it. Yet, problems with emotional issues are not uncommon in people with
MS, and periodic evaluations by a psychologist can help to prevent
serious complications from developing.
More Specific Areas
While it is good to have yearly checkups, or as frequent as your doctor
feels is necessary, there are some areas that need to be monitored
routinely to help ensure proper management of your loved one with MS and
their care. Let’s take a brief look at some of these areas here. You
will find a more comprehensive checklist accompanying this article that
you can copy and use to help monitor all these areas. Keep copies of the
list to use as comparison and to show your health care provider on
Activities of Daily
How much assistance is required for your family member to eat, dress,
cook, clean, perform personal hygiene and any other necessary functions?
In many cases an occupational therapist can help with these areas and it
is advisable to get a consultation for an initial evaluation and
What limitations does the person with MS have? Can they get around the
house and the community without difficulty? Is driving a car an issue at
this time? Again in many instances a consult to a physical therapist
will help in this evaluation initially and provide recommendations for
any adaptive equipment determined to be helpful in their situation.
Braces, canes, mobility devices such as scooters or wheel chairs can go
a long way towards maintaining independent functioning. The more the
person with MS can do for themselves, the easier your role of caregiver
Bowel and Bladder
Problems in these areas are common in people with MS. Monitor any
changes in bowel and bladder function. Also you need to consider if your
loved one is able to attend to their own bowel and bladder functioning.
Physical limitations can cause problems in completing bowel or bladder
routines, and perhaps something as simple as a button or a zipper is the
cause of the problem and this can be remedied by using elastic
waistbands or velcro closures. Constipation and frequent bladder
infections can be very frustrating and so setting up a program to
maintain regularity can often improve the level of functioning by
helping to keep your loved one continent and regular.
Has a loss of sensation occurred? This can lead to problems because we
change or shift positions based on our comfort level. We sense pressure
to the sitting area and move. If the person with MS has lost sensation
there is no warning of discomfort to change position. This can lead to
skin break down. Spending long periods in a wheelchair or long periods
of immobility will cause problems. It is advisable to make the physical
therapist aware of any difficulties and request recommendations for
proper cushions or other pressure reducing appliances to help reduce the
chance of impaired skin integrity.
When you made your list, and noted your initial assessments, you will
soon see where problems areas currently exist, or may become a problem
in the future. Next you will need to determine which items on your list
are of greatest importance. Prioritize the list. In many cases you will
not be able to take care of everything on the list initially.
Realistically there is just not enough time for your health care
provider to address each separate issue at one time. However letting the
doctor know you are monitoring all these areas will go a long way to
showing him or her that you are being proactive in the health care
planning of those in your care.
is possible that your health care provider may not take you seriously or
may dismiss some of your concerns as minor, or seem unwilling to listen
to you. They may feel overwhelmed by all your concerns, and feel at a
loss to help you. Personally, I have found that in some cases the health
care provider is not exactly responsive to my needs because some
physicians still feel they are the ones to make the assessments and get
defensive when I would question recommendations or request specific
options. Not all doctors continue to have this outlook. It is important
to realize that you and your loved one do not need to maintain the
services of any health care professional if they are not providing what
you need. Remember health care providers should be doing just that.
Providing for health care. Anything less gives you the right to select
another provider. This is one of the more unpleasant responsibilities of
a caregiver, knowing when it is time to look for a new health care
you find you are having a problem communicating with a provider, or are
seeking the help of an outside agency such as a consumer advocate agency
or customer service organization, be sure to make all your requests in
writing and keep copies of everything. Hopefully you will not have to go
through this, however it is better to be prepared just in case you need
the information at some later date. Frequently the heart of the problem
lies more with the managed care system or insurance company than it does
with the doctor. Many of the doctors I speak with tell me how frustrated
they get when they are prevented from follow through due to some
restriction placed on them. Keeping positive lines of communication open
with your health care provider may prevent some of these problems. In
the end it falls to the caregivers to continue to be an advocate to
those in their care. Demonstrate your resolve to get the best quality
care for your loved one through patience and facts. You will not make it
a perfect world, but you will be better equipped to deal with the
challenges that need to be faced for years to come.
Grace Curry is a
caregiver and works in the health care field. Comments can be sent to
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