Name: Heather Svenson
Location: Multiple Sclerosis Society Minnesota Chapter
Time: 09:07 AM
It can be difficult for a person that is diagnosed with a chronic illness like MS but it also can be difficult on the caregiver, spouse, family member and friends. Due to the changes that MS can bring to a person and their loved ones it may be important to seek some counseling help to talk about the changes and the grief and loss that everyone is going through both individually and as a family. I think it is also important to talk to your husband about your feelings so that he is aware of how this is difficult for you. It may open him up to talking about his fears as well. You can also contact the MS Society to get resources such as support groups for people with MS and caregivers and any additional information that might be helpful. You can contact the MS Society at 1-800-344-4867 to get connected with your local chapter.
Location: Bucks County, PA
Time: 10:05 AM
My wife is almost completely dependent on me and others for her daily care. She was diagnosed with MS in 1983 and for the next 14 years experienced mild to moderate exacerbations. In '97 she began to get worse ... much worse. She is now confined to a wheelchair. She barely can use her right hand for anything and her left arm/hand has tremors so bad she cannot feed herself. Every week something new and more debilitating manifests itself. More than anyone, I know none of this is her fault. Still, when I go to transfer her from the bed to the wheelchair and her legs stiffen up like pieces of 2x4 lumber, I sometimes lose my patience and urge her to "give me a break, here. You're not trying hard enough."
When I go to hand her something and, for the 3rd time, she drops it, I roll my eyes, sigh loud enough for her to hear and regret it immediately.
The point is, I don't react this way every time something happens. But everyday I do get up in the morning, thank God for another day and ask him to give me the strength to take care of her today and the patience to do it lovingly. Sometimes I get both; others, I just get the strength. Probably because I'm human, like you.
Do your best, with the right intentions. Give yourself a break; you're not perfect. When you lose your patience, and you will, apologize and promise your husband you'll be there for him. Assure him, and yourself, that you love him and you will try to be more patient. Then let it go and forgive yourself.
Location: Kansas City
Time: 08:13 AM
When a person in a family is given a diagnosis of a chronic, progressive disease, there is a period of adjustment which includes all the stages of grief from denial to acceptance. Of course these stages don't come in order and many of us have to go through the same stage many times. It is frustrating. However, I have found that my most precious gift is the people in my support group who have wisdom from experience and can help me find my way through an exasperating period. At first, I didn't want to attend a support group: why would I want to view my future? But believe me, the group is worth every second I spend with it. Be kind to yourself as you and your husband adjust to an unknown future. Find a way to start the conversation with him about your fears and his. Find a support group for yourself -- and for him, if he is willing to attend. Learn what you can about his situation, the disease, what research and drug trials are available. Be active with him as he considers treatments and clinical trials of new treatments. Take some time each day for yourself, away from caregiving, so you can come back to it refreshed. Accept that each of you will get mad -- at the disease, most likely. It is a long journey your husband and you are on. Preparing now will make the later journey less stressful.