Life with MS

If you are caring for a loved one with MS who is significantly disabled, you are probably facing some serious daily challenges. In fact, you may be so overwhelmed with responsibilities that you haven’t even considered your own mismanaged stress, poor diet, physical inactivity, unrecognized or undiagnosed depression, denial, fear, isolation, loneliness, or grief – all of which increase your risk for future health problems.
 
If you intend to continue caring for your loved one with MS, you simply must care for yourself first. Imagine yourself on an airplane. What does the flight attendant tell you to do in an emergency? Secure your own oxygen mask first – then tend to your child or significant other. The same principle applies to caregiving.
 
If you are “burning the candle at both ends,” it won’t be long before you fall victim to caregiver burnout. Consider the following questions:
 

• Are you often feeling angry, bitter, or resentful?
• Are you constantly exhausted and overwhelmed?
• Are you frequently ill?
• Do you find yourself thinking about an escape or a way out?
• Do you often feel hopeless or desperate?
• Do you deny yourself time with others?
• Do you use cigarettes, alcohol, sleeping pills or food to cope with stress?

 
If you recognize yourself in these behaviors, it’s time to focus on some serious caring – for yourself! 
 
Help is available – reach out and get it
 
Recognizing the fact that you are trying to do too much and that you need help is an important first step. Help doesn’t necessarily have to be a full-time nurse or housekeeper. Sometimes, just a small task done by someone else, a conversation with a friend, a kind word, or a brief respite can make all the difference in the world. Help is available – but just as an oxygen mask only works if you put it on, you must reach out and get the help you need.
 
The following resources can provide practical assistance for you and your loved one or referrals to other organizations that can help in various capacities.
 
The MSF Homecare Assistance Grant program
 
This program provides short-term in-home services including personal care, homemaker companion services, physical, occupational, and speech therapy, transportation services and temporary respite. A caseworker will assist you in getting the right services for your situation. To learn more, call 888-MSFOCUS (673-6287).
 
Today’s Caregiver / Caregiver.com
 
With or without computer access, Today’s Caregiver is a lifeline for caregivers across the country. Through the magazine or website, you may access information about mobility, long-term care, medication management, caring for a loved one with incontinence, managing caregiver guilt, and more. Join online forums to talk to others in similar situations, search the regional services directory, or find support groups in your area. Call 800-829-2734 or visit www.caregiver.com.
 
Meals on Wheels Association of America
 
Anyone who is homebound, of any age or economic status, and unable to shop or prepare their own meals – on a permanent or temporary basis – is eligible to receive meals. Other support services, such as emergency preparedness, fall prevention, etc., vary by location. Call 800-677-1116 to find the Meals on Wheels closest to you or visit www.mealsonwheelsamerica.org.
 
The National Respite Coalition
 
This organization is dedicated to securing quality, accessible, planned and crisis respite services for all families and caregivers in order to strengthen and stabilize families, and enhance child and adult safety. Their National Respite Locator Service can help you find respite services in your area. Call 800-677-1116 or visit www.archrespite.org. 
 
211
 
Get connected with the community services you need. An initiative of the United Way and the Alliance for Information and Referral Systems, this community helpline provides information about and referrals to services for everyday needs and crisis situations. Find crisis intervention services, support groups, counseling, drug and alcohol intervention, rehabilitation, health insurance programs, Medicaid and Medicare information, home health care, adult day care, respite care, transportation, homemaker services, and more. Currently, 211 serves approximately 65 percent of the U.S. population. If 211 is not available in your area, visit www.211.org. 
 
On a final note, the passing of the Lifespan Respite Care Act of 2006 into law will provide much-needed funding to help your community better meet your needs. It will take some time, but help is on the way.
 
(Last reviewed 8/2009)