Tuesday, August 21, 2012

The Family Meeting

Kelly Nieuwejaar

Keeping up with household chores isn’t easy. But when you have a spouse with MS, it becomes as much of an emotional effort as a physical one. Some days I fear that one of the cats might disappear under an avalanche of dirty clothes. I try not to notice the inches of dust on the coffee table or the tufts of cat hair floating across the hardwood floors.

It’s the summer so it’s a tough(er) time of year for many people with MS. I don’t want my husband to do something he can’t really handle just to make life easier for me — not at the expense of his limited energy. At the same time, I feel resentful and consumed by guilt from wanting to ignore his disease and demand some help. 

The line between what my husband can and cannot take on is still so blurry to me. So much so, that I end up saying “I’ll handle it.” But the truth is, I feel like I’m drowning and I just don’t know what to do or how to handle asking for help while being sensitive to his limitations. I start really focusing on his disease. My thoughts go from, “I sure wish he’d put his socks in the hamper,” to “MS is something I can’t handle; I can’t do this!”
Thankfully I recently got some great advice: Set weekly family meetings. On Sundays we usually sit together and plan the menu for the week ahead so I can do the grocery shopping. Now we tack on our family meeting at the end. I tell him exactly what I need help with and he tells me what he can realistically manage (or not). Nothing gets pent up on my end and we work out ways to make some things easier for him to handle. I also learn more about what he needs and how I can help him. I feel so relieved and life at home is more manageable. My husband feels like he’s contributing more, too. Everybody wins!

Kelly Nieuwejaar lives in southern Maine with her husband, Khoren. Read another article written by Kelly and learn more about how MS affects the whole family in the Fall 2012 issue of Momentum


  1. I live with my sister and we both have ms......but it works out ok......many things she can't do....i can ......and visa versa........

  2. Great tips! We rely on the same tools. When my husband is shopping for me at the grocery store, he often texts photos to me of items that I want so that I can 'see' the options I have.

  3. I live with a son with MS. It is such a fine line trying to figure out how much of what he doesn't do is because of the MS and how much is because he's a young male. I try to be reasonable and understanding. But, at the same time, I don't want to be taken advantage of. I tend to err on the side of compassion. Our talks about these things tend to be impromptu. Perhaps a regularly scheduled "family meeting" is a good idea. Thank you for the post.

  4. I am a male, 55 years, and I too have MS and type 2 diabetes.

    I am thankfully better off than many others.

    I am on disability now. But my wife and I have divided the chores based on ability.

    I can WASH and throw clothes into the drier. I am not allowed to try and fold them though. Apparently she gets choked when I give up on the flimsy tops and bottoms she has and I sort of make a ball out of my folding... I can't understand why.

    I can cook. Simple guy, simple cooked meals. Seldom from a box too.

    And sweeping I can still do. And it happens lots too. We have a dog that sheds so much that we sweep up a new dogs worth of hair almost daily.

    We don't have stairs in our house. Stair frighten me now. I am unstable enough that because balance is an issue. So no stairs.
    And no ladders. My wife and her friends have made that clear. I don't know what I would do when I got to the top of one anyway.

    I still shop. I am a power shopper. I live a short distance from the store, so I plan meals and use the store as my pantry. No waste.

    I pray for you all that despite your differing abilities, you find that compromise that lets you enjoy life.

  5. My 54 year old husband gave up his license over 10 years ago. I dragged our two sons (and my husband when he was able) to scouting events, school events and sporting events. Sometimes I get angry that I have so much responsibility. But, then I am extremely thankful that he is able to
    walk the dog with me most days - and I am not pushing him in a wheelchair. A weekly meeting to air some things out - in a calm setting, is a great suggestion. I do have to say that we have raised two wonderful sons who are very aware of their father's limitations. I think they will both be wonderful, helpful, caring spouse's one day.♥

  6. Wow! I've never thought of that, but what a great idea! My husband has MS and I am often left feeling angry, resentful, etc. because of how much I have to take on, seemingly by myself. Thank you for sharing-we are going to try this!

  7. I have MS and it is hard for me to know what I can and cant do. It changes from day to day and hour to hour. I often wonder how my family could possibly understand the inconsistency and unpredictability of chronic fatigue and pain. I am told by my doctor that conserving energy is so important but at whose expense. For the first time ever, I have to put myself first in order to just survive, but "I look so good" they tell me. It is hard to look "so good" when you feel like you are being devoured by an invisible enemy that is sucking the life out of you.

    1. So very, very true. Also, when my husband does have a little energy he wants to spend it doing something he enjoys, not emptying the dishwasher (which is something I enjoy having done). It is my mantra that "I am lucky not to have to walk a mile in my husband's shoes". I know I slip and complain but hopefully after 20 years I slip less than before and eventually we will find a very happy middle ground. I hope the same holds true for you and your family!

  8. Many grocery stores let you order online & deliver. I struggle every day to keep a challenging career... working 50+ hrs a week. I have a service to clean my house once a month. My husband takes his clothes to a laundry service now too. But even with these tools I feel so guilty about how much my husband has to do. It's all so hard... I wish I could do more. I hope and prey that I can keep working!

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