Multiple Sclerosis: Getting and Managing
Health Care Needs
By Grace Curry
 

If 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.

We 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.

In 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.

 General Health

It 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.

At 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 to Monitor

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 routine checkups.

Activities of Daily living:

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 periodic updates.

Mobility:

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 will be.

Bowel and Bladder Function:

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.

Skin Integrity:

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.

It 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 provider.

If 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 editor@caregiver.com

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