Dick Peterson: "MS is my enemy. Elizabeth is not my enemy."
Dick Peterson of Summerville, SC is a care partner for his wife, Elizabeth, who was diagnosed with MS in 1995. Her disability progressed over the years to the point where Dick needed to take early retirement from his employment in 2005 and had been a full-time care partner since. This is his story.
Elizabeth’s disability is a right side paralysis which confines her to a wheelchair, except for transferring to the toilet, bed or to the front seat of our car. She can stand and, with the help of a brace and specially equipped walker, can walk the length of our hallway, which is about 20 feet, before sitting in the wheelchair again. Consequently, I do for her everything she can’t do for herself. This includes bathing, dressing, hairstyling, medications (including Betaseron shots), meal preparation, clothes washing, housecleaning, and whatever else has to be done.
Elizabeth’s onset of MS was gradual, unlike many others who experience relapsing, remitting episodes. I think this gave me a chance to adapt, or to put it better, work out our system of doing things. The everyday routines, like getting in and out of the car, the shower, the bed, getting dressed, getting her wheelchair over a threshold or a curb, all have to be worked out in ways that we can coordinate. I help her, but she helps me help her to the extent that she is able. Another transition is more subtle. Elizabeth doesn’t give up easily, and now that MS has entered our lives- I think of it as an intruder - I have to give up. Her determination to accomplish what she sets out to do now becomes my doing driven by her determination. I drive her where she “needs” to go, bring her what needs to have within reach - all things she would normally do for herself. These are not the necessities of living with MS, but the ctivities and pursuits of an active woman whose MS is an obstacle that I help her overcome. I am learning to put myself and many of my activities and pursuits aside or on hold for her. I become her servant. And I tell myself that the alternative, if I were not there making it happen for her, would be worse. She would lose interest in life and slouch toward irrelevance.
My needs are secondary, but they are still needs. Left unmet, they could affect the level of care I give Elizabeth, so I have to attend to them. And sometimes the line between needs and wants gets blurred. Regardless, anything that involves my being away from Elizabeth requires working out the logistics of her care while I’m gone. We’re fortunate to have a daughter and her family living nearby. We have close friends we know from church. And we have kind neighbors we view as backup. These are all resources we can call on to fill in when I’m away. I have to resist the idea that I’m the only one who can give her what she needs. Part of what gives me that idea is the systems we’ve established to get things done. My routine in caring for Elizabeth becomes reinvention for someone else.
Begin with attitude. Although I took our marriage vows seriously, I didn’t give much thought to the sickness part of “in sickness or in health.” But when MS arrived, I decided that her disease was my disease and I could no more avoid living with MS than she could. I hate MS. MS is my enemy; Elizabeth is not my enemy. If I allow emotion to distort my love for my wife, I could easily shift that hate toward her.
Learn to be a servant. No man likes to be directed in the what, where, when and how of his life, especially not by a woman. But that’s exactly what being a care partner is about. I’m continually trying to strike a reasonable balance between maintaining my autonomy as a man and doing what needs to be done for my wife’s care. This goes beyond caring for her physically, but emotionally, intellectually and spiritually also. And I accept that I cannot do it all perfectly or completely. There are care needs that go unmet, not to the point of neglect, but there are times when she’s just going to have to sit this one out, or not take on this other project, or tell that person she can’t be there for them.
Allow yourself some personal pursuits and interests. Take an online course, if you can’t get out of the house for a class. Join a ministry in your church. Find ways to mix with other people outside the care partner role. This might involve enlisting others to help, but it’s worth the work. As for me, I ride a motorcycle, serve on my church’s care committee that gives appropriate care to others in crisis, and work on the vacation mountain home Elizabeth and I began as a dream before MS entered our lives. Just because MS is there, doesn’t mean everything else has to go.
Laugh. I can be little sarcastic at times. When Elizabeth is bossing me around, I have to know it’s the stuff she would be doing if she could, but it can get out of hand. So I might say, “Yes’m, Miss Daisy” (ref. the movie, “Driving Miss Daisy”) to let her know I’m reaching my limit. (Actually, I think that’s funnier than she does.) Or if she’s taking too long ending a conversation and we need to leave, I will push the on button of her wheelchair and direct the joy stick to come along. When I have to lift her from a sofa, her feet can lose their grip on the floor and she says she’s falling. She’s not. I’ve got her, but I’ll sing “Slip-Sliding Away” in my best Simon and Garfunkel. Or when she needs me to stand by her in a crowd - she feels vulnerable in her wheelchair - I’ll sing “Stand By Me” or the opening line to “Bridge Over Troubled Water” when she’s feeling depressed or frustrated over her inability to do something. My singing is always good for a laugh.