Do you realize how much you do?
- You help maintain the quality of life for your spouse, parent, family, or friend with multiple sclerosis.
- You become educated about symptoms, treatments, and the progression of the disease.
- You may keep track of appointments with the doctor, medication schedules, and exercise.
- You offer the love and support necessary to meet the challenges of multiple sclerosis.
You are a caregiver. While many patients retain their independence after being diagnosed with multiple sclerosis (MS), some may need more help with daily activities. For others, the diagnosis may come after weeks or months of coping with symptoms that did not have a name. Regardless of how long you’ve been dealing with MS or to what degree, in some way MS has affected your life and responsibilities—physically, emotionally, and/or economically.
The role you have taken on is not an easy one. However, the following tips offer some guidance on how to maintain and improve your caregiving relationship:
Take time for yourself. Make sure that you have time to relax — if necessary enlist the help of other family members or even hire someone to help out.
Learn as much as you can about your loved one’s disease so you will know how you can help and you’ll also understand what changes to expect in your loved one’s behavior or symptoms.
Help your loved one participate in as many activities in the home and outside the home as much as possible. Maintain the intricate balance between helping your loved one accomplish a task and actually doing the task for him or her. Allow your loved one the time needed to complete daily activities on his or her own, such as dressing.
Consult your loved one about his or her family affairs. Although it’s not easy to discuss these topics, you should be informed of your loved one’s wishes regarding a living will, durable power of attorney, and do-not-resuscitate (DNR) order.
Set realistic goals for yourself and your loved one. Do not attempt to do everything. By setting attainable goals, you are setting everyone up for success, rather than disappointment.
Do not put your life on hold. Continue to meet with friends, participate in hobbies or groups, and maintain a schedule as normally as possible. You will not only feel more energized, in the long run you are less likely to feel resentful.
Have someone you can talk to. You are there for your loved one to listen and to offer support, but you also need a support person. Talk openly and honestly with a friend or family member. If this is not possible, join a support group. Understanding that you are not alone and that someone else is in a similar situation helps you to feel nurtured.
The most effective caregiver is well informed, prepared, and ASKS for help and support from all resources that are available.
Challenges of caregiving for patients with multiple sclerosis
There are some unique challenges that the caregiver of a patient with MS confronts. First, the disease is quite variable. There may be times when the patient can function almost normally and then other times in which the patient may be very dependent. This is a natural part of the disease. Also, the patient's response to medications may fluctuate. There is a natural tendency for a caregiver to suspect that the patient might be unnecessarily demanding or manipulative. The caregiver may see the patient functioning normally but then assume that the patient should always be able to function normally.
Second, multiple sclerosis is a progressive disorder. While medications and surgery can provide significant relief of symptoms, they do not stop the progression of the disease.
Third, depression is associated with the disease and its treatment. Depression can even affect you, the caregiver. If you or your loved one have any of these signs of depression, get help from your health care provider right away.
- Depressed mood, or loss of interest or pleasure in daily activities
- Significant weight loss or weight gain
- Sleep disturbances — sleeping too much or not able to sleep
- Problems with concentration
- Apathy
- Feelings of worthlessness or guilt
- Fatigue or loss of energy
- Recurrent thoughts of death or suicide
The most effective caregiver is well informed, prepared and ASKS for help and support from all resources that are available.
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This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 6/2/2006
