While there are many programs to support the person who has MS, it seems there has been little opportunity for caregivers to support each other. So when I was asked to write an article for the North Star Review on what it’s like to be married to someone with MS, I was glad for the opportunity.
Over a decade ago, my husband was diagnosed with MS. Our children were 5 and 7 and I had stayed home with them during their preschool years. Suddenly, our life seemed to turn upside down. He stayed home (for a while) and I went to work. There were lots of “What if” questions in our lives. What if he can’t go back to work? What if I can’t carry this all alone? What if we have to sell the house? What if I can’t care for him and for the children, too?
Our neurologist recommended we contact the MS Society. We receive a great deal of information that helped us work through those months after diagnosis. But there were still so many questions (If it’s his disease, why am I feeling so bad?) and so many feelings (anger, guilt, loss).
Then we attended an MS Getaway Weekend for the Newly Diagnosed. I took part in a spouses group–the first time I had a chance to talk with other spouses. It was such a relief to find out I wasn’t the only one who ever went through this and that others had made it far beyond the point where my husband and I were in living with MS.
In the years since, I have learned a lot – about MS, about my husband, about me, about grieving, acceptance, hope, and partnership. My husband and I have since facilitated MS Getaway Weekends, and I am always moved by the love and caring I have seen in other participants.
I want to offer the word “partner” here instead of “caregiver” because that is how I see myself. To me “partner” encompasses the larger role that a caregiver plays in a relationship with someone with MS.
A partner can be a spouse, friend, or relative who has a close relationship with a person with MS and is called upon to give support (physical, emotional, spiritual) to that person and who receives support back from that person, as in any relationship. Some thoughts about being an MS partner are:
P Priorities – Think about the things that really need to be done. Set your own rules. Change your standards to what really counts.
A Accept – the reality that MS is part of your life, too, but only one part. There are others. Not everything is related to MS and MS is not the cause of all problems.
R Reach out – to others, ask for help when you need it, delegate jobs when you can. You are a finite person and cannot “do it all.” No one can. There is help.
T Treasure hunt – Look for the good things that can be found to some degree in every circumstance. Sometimes they are small or hard to find. Life isn’t fair, but I have seen treasures come from the worst of situations.
N Network to Nurture – Set up a support network for yourself—seek out different people to support you for different reasons (I have a friend who is the mother of teenagers with whom I discuss teen related things; I have other friends who do the same kind of work to discuss work problems, etc.). No partner, mate, or friend can be everything to everyone. The MS Society has a Tell-a-Peer Program for spouses and partners, too, as well as Getaway Weekends and a wealth of information.
E Expect to be happy- Find activities that you enjoy, with and without your partner, activities that enrich your life and uplift your soul.
R Receiving- support and caring from your MS partner is just as important as giving it. Acting as if we have no needs (or our needs aren’t as important) diminishes us and deprives the person with MS of the joy of giving. As in any relationship, the type of support you offer each other will probably differ, but each is just as important.
In the years since my husband was diagnosed we have faced many kinds of challenges, some MS related and some not. I have had my own physical and emotional traumas, we are raising two teenagers, and we are learning to live with MS as a family. My husband and I have worked together as a team, supporting each other in our struggles and triumphs. We have learned some of the variables we can control with regard to heat and fatigue, we have redefined our priorities, and we have turned our “What if?” questions over to our God who has a vision clearer than we could ever know. Life for us is much simpler that way.
If I can make only two points to the partners who read this, they are (1) “we cannot pour with an empty cup,” and (2) partnerships are two-way relationships and as partners we should expect and be willing to receive support from our counterparts, too. A good partnership is well worth the effort. God bless you in yours.
Reprinted by permission of the Author- Marylyn Leaf