Providing Care Guidelines

This is a collaborative process that allows individuals and their health care professionals to make health care treatment decisions together, taking into account the best scientific evidence available, as well as the ‘person’s values and preferences’. In the ‘Shared Decision Making’ process, it is very important to consider the following questions.

•  What are my options?
•  What are the risks and/or benefits associated with these options?
•  How and when are these risks and/or benefits likely to happen?

MS Ireland’s information booklet ‘MS Treatment Decisions’ is a guide on how to engage in shared decision-making around MS treatment options, for people with MS and their Care Givers. 

Maybe you weren’t prepared to be a Care Giver, and an event or crisis placed you in the role. Or perhaps you assumed the responsibility incrementally, doing a little more of this or that over the years. Regardless of the situation, if you’ve provided care to a loved one for some time, you may feel as familiar with the ins and outs of his or her daily needs as your own.

Now might be a good time to take a step back and examine certain key areas to ensure you’re taking advantage of all the options and resources available to you.

Could you benefit from some additional help? You might be unaware of services that have only recently become available in your area, including home support agencies. If you haven’t already, consider opportunities for respite care. Also review the professional options, including home care agencies or workers, geriatric care managers, and contractors specialising in home modification. Your local MS Regional Office may be able to assist you, as can Family Carers Ireland.

You can’t do it alone, regardless of how you (or even your loved one) have come to feel. Long-term Care Givers, in particular, often come to feel that they’re on an island, working alone. Others may believe that no one can do the job they’re doing, that there’s no room or time for anyone else to pitch in, or simply that no one wants to help.

A Care Giver may inadvertently (or unconsciously) push someone away, fail to notice or ignore a change in circumstance that now allows a family member to help when they couldn’t before, or even believe it’s “a little late in the game” to approach others about getting involved.

Keep in mind that friends and family often want very much to help, but may not know where to begin. Others may be concerned about stepping on your toes and may hesitate out of concern for how their offer will be perceived (i.e. “I don’t want her to think I think she’s not handling things right.”)

You may have grown so used to day-to-day requirements that you’ve been unable to give much thought to the future. What will your loved one’s needs be in a few months or a year? How much additional assistance will be necessary? What will be the changes in his or her condition? What will change financially? Also consider what legal measures will need to be in place, and if a change in living circumstances might prove necessary.

Make sure you and your loved one have organised papers and that important financial and legal documents are accessible. Check to make sure everything is where it’s supposed to be, and go through records to ensure they are truly complete.

Many MS symptoms can be controlled by medications, management techniques, and rehabilitative therapies. The health care team can advise care givers about diet and routines that will regularise issues like toileting and sleep habits.

Although MS cannot yet be cured, symptoms can be managed. For some people, the most frightening aspect of giving care to someone with a chronic disease is being responsible for treatments. This may involve keeping track of medications, administering injectable drugs, or performing intermittent urinary catheterisation.

Care Givers can and should make appointments with health care professionals to get information, advice, and training. Treatment plans can fail if the Care Giver does not know the medical staff, does not understand why and how a procedure is done, or instructions are given that are impossible to carry out.

If there are problems with carrying out a medical or treatment procedure, contact the health care team and arrange for a follow-up training session. With proper training and a little experience, most Care Givers end up feeling confident about this part of their role.

Both the person with MS and the Care Giver need to remember that having MS doesn’t protect anyone from the normal ills that can affect us all. This is especially important for people with MS who see a neurologist for their medical care. Specialists may not suggest routine, preventive health exams like Pap smears or prostate exams.

It’s easy to lose track of medications over time, to take their use for granted, or for pill containers to stack up. One doctor may not even be aware of what another has prescribed. Perhaps some medication is no longer needed, is no longer effective, or the dosage needs to be altered somewhat. Newer drugs may also be available.

Discuss this with your loved one’s doctor during your next visit. Prepare an inventory of all the medication (including over-the-counter drugs) your loved one is taking, and go over each one. 

Your local community Pharmacist can also be an important source of information and advice regarding managing medications

Continue to review educational materials and literature related to your loved one’s condition. Do this on your own, and ask your loved one’s doctor if he can recommend or supply these, and inquire about new procedures, drugs, or treatments. The MS Ireland website can be very helpful with information related to the stages of MS.

Once in a while, it’s worth sitting down and coming up with a list of all your activities and duties for the previous week, and marking down the approximate time spent on each. Include everything—work, specific care-giving responsibilities, time spent with family and friends, as well as routine activities like paying the bills, simple chores like cleaning, even sleeping and eating.