Caregiver Perspective: How MS Affects the Family

When a person gets MS everyone is aware of the emotional and physical adjustments that he/she has to make. However, any type of chronic illness affects not only those who have the condition but also those who care about them. It affects their significant other (whether married or in an exclusive dating relationship), their children (whether still small or grown with families of their own), their parents and siblings; their friends; the people with whom they work; everyone around them to some degree. Of course, how and how much depends on the relationship, but there is an effect nonetheless.

Turmoil at work

I can speak to many of those situations. I help managers identify ways to help provide reasonable accommodations that would allow employees with chronic conditions to be able to do their jobs. Often times, it requires managers and coworkers look at how to accomplish a goal from a different perspective. I also try to help the employee know their rights under the Family Medical Leave Act because people with chronic health conditions often need to miss time from work. This is true also for their immediate family members who might have to assist them with transportation or care. Missing time or coming in late to work can lead to feelings of guilt or fear of job repercussions if it happens frequently and FMLA no longer applies. As the family member, especially if you are the spouse and your partner is disabled, a job is your lifeline to having a place to live, food to eat, and medical care; so, creating any type of turmoil at work is very scary.

Effect on extended family and friends

Then, there is the effect on extended family and friends. All plans for special occasions are contingent upon how the family member with MS is doing. For me, I never go out with friends. I never plan a day of shopping. I never get to go to performances at church or attend family reunions or go out with the gang after work. I have a combination of family, friends, and hired assistants to help Lynn while I work. I can make a trip to the grocery store and back as long as I’m not gone more than an hour or slightly longer. As far as participating in anything extra...forget it... I’ve already called in my markers or I need to reserve them for the super important times I need to get away. So, except what I glean from Facebook or emails, I have no friendships. For family gatherings, if they want us there, the events have to be held at our house. I’m very fortunate that all or family understands that and routinely plans special events at our home so that both of us can attend. Lynn needs a place to rest from the activities, and I need to be close by to help him get into bed, feed him, and cath him as he needs it.

Impact on older children

For children, the impact is closer still. Not only do they grieve over the things their parent can no longer do with them (Lynn had to miss his son’s graduation from Graduate School, for example), but they feel guilty often for still wanting to participate in the things their parent no longer can. Lynn’s son is very caring and is really wonderful for helping out and keeping in touch but I know he struggles with balancing what he wants to do and feels he needs to do (though he has never said anything), I’m sure there are times he resents us “expecting” him to help me out at events. I know he probably wants to have “just one” family gathering where he’s not called upon to help care for Lynn while I help out with the other activities occurring. Those feelings are natural but often lead to feelings of guilt. Then there is also the fear of, “Will I get MS, too?” Knowing the symptoms and learning what may help preventive MS becomes a way of life. There is also that question when they start dating, “do I get married and have kids of my own if I’m likely to have MS or pass it on?” It’s a struggle for them to make the decision to share the possibility with someone they care about and will that person be willing to take on the risk of possibly having a totally disabled spouse, if that should be the outcome? Children have many, many fears, anxious moments, and adjustments to make related to coping with their parent’s MS.

The curiosity and expectations of smaller children

I’ve spoken to the impact on adult children, but it also effects small children as well. Our three year old grandson visits often. He brings things to Lynn to fix or asks papa to play and papa can’t; so, he’s having to learn what papa can do and can’t. He’s curious about papa’s chair and wants to handle the controls (not a good thing) and why is grandma feeding papa? I’m sure as he grows up, he will have adapted to seeing Lynn as he is but both will miss playing ball together, or taking walks, or fishing together at the river.

Dealing with dependence

For me, as his spouse, my life centers around Lynn. All activities in my life come to a halt when he calls for help. I have often burned food, missed calls, lost something I was working on, gotten too little sleep, been too sharp in responses, and eaten just to stay awake gaining too much weight as a consequence. I’m totally out of shape because there is no time left in the day to attend an exercise class or go for a long walk and besides I have to be close enough by to cath him or hand him things if he needs something. He is totally dependent on me and I have to be careful not to become co-dependent toward him. I have to remember to let him be him and let me be me but those lines blur very easily when my life is so wrapped up in seeing to his happiness, health, and maintain his abilities. I am his therapist, nurse, typist, consultant, rehab specialist, banker, cook, housekeeper, agent, partner, and spouse. Without me and my help, he would not survive in as good of a condition as he is in now; so, I carry a great burden of responsibility toward him and HE...ALWAYS...COMES...FIRST. If he’s cold and I’m hot, I turn up the heat. If he wants to lie down during a family event, I leave the event even if I’m having a good time. If he needs special equipment, I buy it even if I needed something else. I get him ready first for church and quickly get myself ready in 5 minutes (just throw on clothes, run a brush through my hair and head out). I often feel there is no more “me” but only “him” with a little “us” thrown in.

In this together

I fear for the future. I know his life depends on me. I worry about being able to continue to work long beyond when I should be able to retire just so I can afford to care for him as well as he needs. I worry about what happens if I die or become disabled and can no longer be his caregiver. I resent not having any time to myself but then fill what time could be mine with doing things for him; so, I’m my own worst enemy. I watch for every change in his condition to attack it before it gets worse. I cook his special meals and heat up frozen dinners for me when I get a chance because his grass-fed meats and organic vegetables are so expensive.

There is no part of my life that is not affected by his MS. I am his legs, his arms, and his strength. I fight his battles and share his defeats. We are in this together to the end because we are family and that’s just how this family works.