Life with MS

We live in a culture that reinforces the belief that it is better to give than to receive. As a result, caring for another human being is seen as a selfless, loving, and generous act. Being needed by another person provides a sense of purpose, and enhances self-esteem.
 
Being on the receiving end, however, is quite another story and understanding why the care-receiver may be resistant to your help is vital to competent caregiving.
 
Human beings have an innate need to be self-reliant and independent. When robbed of the ability to meet this need, an individual may be overcome with mixed emotions. Anger, rage, self-pity, sadness, and depression are not uncommon. Similar to the grieving process following the death of a loved one, the individual must grieve the loss of their autonomy.
 
Remember that resistance has very little to do with you personally. Once you are able to grasp this reality, you can begin to break down the wall of resistance, and encourage the care-receiver to accept the help they need.
 
Don't let medications, limitations, and nutritional modifications overshadow the care-receiver's other needs. Affection, understanding, compassion, laughter, joy, and touch are equally important. Help to assure them through your actions that they are still the same person, regardless of their need for care.
 
Take part in activities unrelated to the care-receiver's healthcare needs. Watch a funny movie together. Laughter is the best medicine. Sit quietly, holding hands, and simply listen to the thoughts and feelings of the care-receiver. Sometimes saying and doing nothing at all is precisely what is needed most. Amidst a flurry of daily chores, this can often be overlooked. Read a book aloud or get a book on tape from the library. Take a time out from the disease. Step back from your role as caregiver from time to time, allowing the care-receiver to just be your friend, your equal. When you are up against resistance, think less and empathize more. Avoid agitating, arguing with or otherwise provoking the care-receiver. Offer reassurance, comfort, praise and acceptance. Softly say the person's name, offer a kiss or hug. Give a back rub or foot massage.
 
Another brick in the wall of resistance is the feeling of being a burden. Whether it is expressed or not, the care-receiver probably feels guilty, embarrassed and sometimes ashamed, about monopolizing so much of your time and energy. This can fuel feelings of helplessness and anger, but there are solutions.
 
Avoid doing things for them that they are able to do for themselves. Encourage independence whenever possible. Take time out for yourself. Keep that doctor's appointment or attend that PTA meeting. Let the care-receiver know that you will be busy for a while, but you will return. By continuing to meet your own needs and responsibilities, you will diminish the care-receiver's feelings of being a burden, while simultaneously caring for yourself.
 
The care-receiver that demonstrates resistance can and will push you to your limit. Be aware of their potential for recurring negativity and depression. It can be contagious. Particularly, if you fail to care for yourself properly. This will lower your resistance and you will become more vulnerable. If your relationship includes a history of addiction, conflict or abuse, or you are feeling severely anxious or depressed, get help immediately.
 
Help can be obtained through home health agencies, the social services department at your local hospital, family members, and close friends. A visiting nurse, helping out even once a week, can change your life as well as that of the care-receiver. An outside, paid professional is not only objective, but emotionally uninvolved. Often, this enables the care-receiver to open up in ways unimaginable with someone close to them. Don't allow yourself to fall into this same pattern of resistance. If you need help, get it. Asking for help is not a sign of weakness, but a sign of strength.