How does my MS impact my kids?

Although I do my best to function like a “normal person,” I know that my MS has an impact on the rest of my family. My husband often has to take on some of the household duties when I become fatigued or overwhelmed, and it can be very difficult for me to hold my own in a conversation after 8:00 pm.
 
What I worry about the most, though, is the effect that my MS has on my twins. I once heard a saying, “Parenting is the hardest job in the world if you are doing it right.” Sometimes it feels like “doing it right” is almost out of reach when one of the parents has MS. With an estimated 2.3 million people in the world living with MS, a disease typically diagnosed between the ages of 20 and 50, there are clearly millions of children who are in an MS-affected family.
 
I was excited (and a little nervous) to hear a lecture at ECTRIMS 2013 on this topic by Julie Yoon Skodshoej Moberg, a nurse at the Danish MS Center, entitled, “The implications on children who have parent(s) with multiple sclerosis.” Ms. Moberg presented the results of her extensive literature review, summing up 25 articles about children in families where one parent has a chronic illness. I was anxious to see what researchers had discovered about this topic, but of course, I also wanted to see if I was doing okay and if there were major pitfalls that I could avoid as a parent with MS.
 
Not surprisingly, the research that Ms. Moberg presented demonstrates that physical disabilities and cognitive dysfunction related to MS (and other chronic diseases) certainly complicate parenting. As a result, some “side effects” of these problems that can cause difficulty in a family include:

  • Lower income or complete loss of employment, due to inability to maintain a certain profession.
  • Less spontaneity and participation in family activities because of fatigue.
  • Chores and household tasks take longer to do or cannot be done.
  • Separation from spouse, attributed to MS, can occur.

In addition to these tangible results of MS, the research shows that there are also psychological effects of living with a chronic disease. Life stressors seem to have a much greater negative impact on the whole family, perhaps magnified by persistent thoughts by parents that they are not living the lives that they imagined for themselves or that their parenting is not the parenting that they wanted.
 
What does this mean for the children of parents with MS?

  • Children can experience stress caused by worrying about the health of the parent with MS and what disease progression may mean for the family.
  • It can be time-consuming to help parents with household chores, as well as the parent’s own daily activities in some circumstances. One 12-year-old girl who was surveyed said that she felt chronically exhausted, since she did the majority of the cleaning, shopping, cooking, babysitting and helping siblings with homework.
  • If parents need help with their own personal hygiene, it can be an additional physical and psychological burden on children. In one extreme example, a14-year-old boy reported that he was extremely uncomfortable having to help his mother in the shower.
  • The child’s social life may be impacted negatively if they are apprehensive about bringing friends home, due to his or her parent’s disability. 

Lest we fear that we have irrevocably damaged our children, I am happy to report that there are likely some positive aspects of having a parent with MS. Some of these kids reported that they were:

  • More self-reliant
  • More independent
  • More responsible
  • More helpful
  • More sensitive to the needs of others 

In short, it seems like in some cases, having a parent with MS helped children mature more gracefully into a better citizen of the world.
 
What is recommended to parents with MS taking care of kids and themselves?

  • Be honest with them about the MS, as soon after diagnosis as possible. This allows the whole family to cope with the MS as a team, and avoids the situation where the child feels isolated when they find out later.
  • Get social support for the parent with MS, healthy spouse and kids – either formal or friend network. Reduces stress.
  • It is a big challenge when kids have to take care of intimate hygiene. It’s better if they don’t – children have right to be children. 

One participant made the very astute observation that, until recently, most studies of MS in families focused on psychopathology occurring in children of parents with MS. Now it seems that attention is turning more towards investigating coping strategies to identify tools to help families.
 
While this presentation reinforced many of the things I had already figured out through personal experience, it reminded me that children, especially young ones, live in a very small world, of which the parents are a very large part. Anything that makes a child feel different can lead to feelings of isolation. Do your best to make your child feel like MS is just one factor in the family and remind him or her that every family is different and everyone has their challenges. While the words may ring empty at times to your ears, acknowledging the MS, but not focusing on it, allows children to cope with it in their own way.

Resources: 

**Tune in throughout the week as the Society’s research team and I provide live updates from the world’s largest MS scientific meeting in Copenhagen, Denmark.** 

Tags Parenting, Research      10 Appreciate this
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Julie

Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.

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    20 Comments

  • Martha Wells   Oct 2, 2013 1:11 PM
    My mother had MS. My sister and I were the youngest of seven children and we had to take on the lion's share of the household responsibilities and the care of our mother. I prayed every day for her to get better. She didn't. I grew up thinking that if I were a better person, she would get better.My problems were not important to anyone. We had older brothers who lived with us, but, did nothing to help. We took care of them, too. We cooked, cleaned, did dishes for everyone. We bathed, moved, tended and gave enemas to our Mother. There was no help from any government programs. There was no help from anyone. I was often in fear of her death. I developed Post Traumatic Stress Syndrome. It is about time that someone is looking into this issue.
  • Filka Miletak   Oct 2, 2013 1:21 PM
    Marryann i think you are doing wunderful and you are lucky to have an wunderful and understanding husband.I,m sure your twins are as good.God bless you and all the MS suferers i hope the scientists find a cure for this desease soon.
  • Avatar
    A_J_  Oct 2, 2013 2:10 PM
    Even grown children are affected. The hard part now is not being able to help with my 1yr old granddaughter. It makes me very very sad.
  • kikis-smiling  Oct 3, 2013 5:26 AM
    I'm a 47 year old and I have had MS since 1995. I became pregnant and I delivered in1996 a beautiful boy who will be 17 two days after Christmas. Iam also a single mother who has struggled. I have been to 5 Neurologists and through so many tests for cognitive function and I can't even count how many MRI'S. In the beginning thank goodness my son was to young to understand what was going on.I found myself at work and I couldn't remember what I was supposed to be doing or I forgot how to do it. In 2008 things became extremely worse and my son was only 10 and in the 6th grade. I had gone to see my Neurologist because I started to have spasms in my legs. I was crying and it seemed that every time I went to see him I ended up crying. He told me that I needed to see the psyciatrist because he felt I was extremely depressed. I went to see her and she put me on Seroquel. Apparently one night my son and I were at a bbq and something went extreamly wrong with me. I began to shake and was repeating myself among other things. My son was witnessing all of this and I couldn't explain what was happening because I had no idea and do not remember anything. The last I knew I was restrained to a table in the hospital like a mental patient. The Dr's had no idea what was happening and I was sent home. I continued to have these episodes and went through a series of tests and still no results. My son would come to me crying and asking if I was going to dye. I would comfort him all the whille I would be balling my head off at the same time telling him no sweetie I'm not going to dye. I ended up losing my house, I couldn't drive and had to move in with my parents. I slept on the living room floor for a year and a half. I had been in and out of the hospital because of these episodes. The Dr's would tell my parents that I was bringing them on myself and that this has nothing to do with my MS. Even my Neurologist had said the same thing until one day I has had an episode in his office during an exam. My mother had asked him now do you believe? He said that it could be a form of seizures. I went for a 24hr video monitoring and nothing showed as far as brain waives but I had 2 episodes while in the hospital. They didn't think it was epilepsy and was sent on my way again still no answers. While maintaining my MS with copaxon, my son was with me every time I was in the hospital. It had got to the point that I had been in the hospital so many times that he didn't want to come anymore. All of this has really taken a toll on him, that he has shutdown, doesn't want to talk and his grades have fallen. It has also affected my parents because we had to move in with them. They added an addition to the house so I could have a room to sleep in. This is there retirement years and they haven't been able to do the things that they wanted to do. I have so much guilt built up and so upset with every thing that has happened. I saw a commercial one day for Seroquel XR and thought I would look up the side affects. Remember this is the drug that the psychiatrist put me on. The affects were weight gain, high cholesterol, high blood pressure, and seizures. I had a MS relaps in August 2011 and a psychiatrist came to see me and I had asked him if I could go off the Seroquel and he said because I was on such a low dose I could just go off of it. I did and I had a seizure in December and that was the last one. That year I was in the hospital 5 times for my MS. I have changed Neurologist, Iam on Tysabri and my MS is under control and have not been in the hospital at all this year, and I will be 2yrs seizure free since I went off Seroquel. Because I did have seizures for 3 1/2 years I did have to have surgery for a herniated disk. I'm on my way to recovery and getting , my life back and rebuilding a relationship with my son. No mater what disease you have it affects the whole family.You have to have that support and don't be afraid to ask for help. Sorry my story is so long but it has been built up for so long that I had to get it out there. God bless all of the people who are suffering or maintaining this horrible disease MS. Be strong, fight and never give up ♡♡♡
  • Paul T.   Oct 3, 2013 10:42 AM
    Thank you for writing about this. I was diagnosed last year, and this very issue has stressed me out more than anything else. I have a 3 year old son and a 6 year old daughter, and worry constantly that the stress of dealing with MS is going to negatively impact them at these critical developmental years. I know I've had problems with mood swings, and dealing with tantruming children is a bad mixture when i'm having a very symptomatic day.
  • Lisa Franco   Oct 3, 2013 10:32 PM
    I was diagnosed with Relapsing Remitting M.S a year 1/2 ago, to start with they said it was just starting and would be mild. I found it extremely difficult to get diagnosed until losing all feeling down my right side and started moving down my right leg, had bad foot drop causing me to fall over a lot, extreme heat intollerence which causes me to have cognitive damage, thinking, talking, walking. I was admitted 8 further times with relapses it became out of control. They changed me from Interferon to Avonex, however Ive been battling pneumonia 5xs just this year. I have two boys 10 and 12, I try to keep things as normal as I can, and be positive. I have such unwavering support from my husband. I never knew or understood this disease .... I can start the day ok and by lunchtime be using a walking stick or unable to talk properly or remember anything. I try to hide it. The most important thing is to not plan anything, you can't. Rest, I have to try and not get stressed and organise quiet activities with my kids so we are still interacting esp school holls. Hard when u look normal and everythings not working internally - thats my no.1 battle with others expectations and requests for my help with their kids when im so sick, whilst still maintaining friendships with min socialising ability. Uhhh.
  • Martha Wells   Oct 4, 2013 5:07 PM
    Do you see that most of the comments are all about the patient. The subject of this blog is, how does this affect the children of patients with MS. The children become lost due to the disease or the parent becomes dependent on the child as in the family of an alcoholic..
  • John P   Oct 17, 2013 12:34 PM
    My wife has had MS since 1993 and all she has left is a small amount of motion in her right hand. After being treated by some of the biggest names in MS I highly recommend finding a new doctor if the one treating gives up trying to stop the MS. We have 2 wonderful children, 16 and 13. Living with MS has made them stronger in some ways but has also been very hard on them. Both have come to me at different times and asked for help with depression. The other problem they face every day is social isolation. People just don't know what to say so they avoid you. Make sure your kids have an outlet of someone to talk to. It doesn't have to be a doctor but someone they feel comfortable with.
  • Mary Beth   Oct 17, 2013 12:54 PM
    One thing that has been hard for me is accepting help from others. But, what I am slowly realizing is that when I let other people help me, I have more time AND energy for my kids. So, if someone offers, take them up on it. It makes them feel good, it gives you more time to spend with your children and they will benefit from a rested, relaxed parent.
  • Arie   Oct 17, 2013 4:35 PM
    MS has affected my child. She was throwing everytime I got sick. I felt so bad for her. I didn't know what was going on with her. Come to figure out a month later I was diagnosed with MS. She started to throw up almost everyday I felt so bad. I took her to the doctor and she was having abdominal migraines. As a result she is living with my parents and is doing so much better. I'm still trying to get my MS under control so I can live a normal life and raise my daughter.
  • darla   Oct 17, 2013 7:11 PM
    I have MS Progressive 2 stage and I will admit even though I have a care taker that comes to my home 3 1/2 hours per day that is still not enough because my child who is now 15 has been giving me my shots since she was 12 year old. even though now she wants to be a nurse there is so much of a hard ship with her especially since we cant do stuff that she wants to do. I hate this disease and I wish there would be more research for people who have progressive MS the biggest regret I personally have is that I can no longer go to the zoo. even though I have my electric wheel chair it doesn't help me when I don't have a vehicle that could transport it so therefore I am stuck in my home all the time. I really happy when I first got it thinking of what joys I would have but learned real soon that the transport was so expensive that I could not afford it on my disability check. Also I think it is not fair that businesses are allowed to force retirement when you have MS regardless of what stage you are in
  • My husband was just diagnosed   Nov 13, 2013 1:19 PM
    My hubby was diagnosed with PPMS 2 weeks ago. We have 3 boys, 10, 7 & 3. We have told the older 2 but the 3 yo won't understand. The older 2 seemed to understand but I worry about what will happen as they get older and their dad's MS gets worse. Will they be embarrassed, ashamed, teased etc. We are just slowly coming to terms with this daignosis and how to deal with it, but I am aware that the boys will need to do the same, but I'm unsure what is available for them.
  • DbaiG   Nov 20, 2013 4:07 AM
    Such a detailed content on MS and its affect! I am 100% agreed with the details Julie. The article is a psychological insight into a family where one of the parents is having MS. No doubt, maintaining family functioning with MS becomes difficult but situation is more complicated when you are not having support from your family.

    DbaiG
    Bolee.com
  • Zeyda Foreman   Sep 3, 2015 7:55 PM
    Thanks for writing this article. I am the MS parent of 11yr. old twins. I am very lucky to have some really good , helpful kids. I feel so guilty sometimes that they have to do so more than their normal chores we have them do. My husband works a lot and kids have to help me with the simplest things I used to do , make meals,laundry etc..I am glad they dont feel embarrassed to bring their friends around me. I get so fustrated that I cant be their for them like I used to. I know they will be some pretty awesome people after having and taking care of me. I am so proud of them and love them with all my heart.
  • Lyn Botha   Sep 4, 2015 1:13 AM
    The change from being a dynamic Manager of a Cancer Medical Centre to being a homebody on Medical Disability was the most difficult thing I had to endure ..... Lyn
  • Susan Kay Scelzi   Sep 4, 2015 12:19 PM
    Thank you so very much Julie.
    I have had MS for witch seems like my family's entire lives. They are now grown & have their own family's. I sent them each a copy of this article. One sone wrote back saying what a great thing your doing.
    Anyway thank you once again.
    Sincerely,
    Susan Scelzi
  • Stacey   Sep 4, 2015 2:54 PM
    I'm an adult now but I know what it's like to have a parent with MS. My dad was diagnosed when I was 8 but he did not tell me until I was 13 when he couldn't hide it no longer. All I knew was that he had issues with his eye sight, but then he needed a cane and soon after a walker. I hated the fact that my parents didn't tell me right away. Even if a child doesn't get it, it's important to let them know. As a teen I would help out taking care of him now that he was bed ridden and using a wheelchair. Life was never the same and I would often wish he would just be normal. I didn't like seeing my dad like that but he always made sure to smile and crack a joke. I was this caregiver for almost 4 years until he passed away unexpected. If it wasn't for his MS I wouldn't be as compassiate and helping. I'm still a caregiver helping others in need.
  • Kim   Sep 4, 2015 5:41 PM
    This is the hottest of the hot topics for families with MS. My husband was diagnosed with progressive MS five years ago when our children were 5 and 2. It's critical that all children learn responsibility by helping their parents with household chores, e.g. cleaning up, working in the yard, feeding pets. That said, it is incredibly selfish for a parent to place the burden of their illness on their children. It's our job as parents -- whether healthy or not -- to protect our children, not dump on them because they aren't empowered to say no. It breaks my heart when I read/hear stories about people who have missed out on life because they're care givers to their parents. It's just wrong.
  • Kim   Sep 4, 2015 5:57 PM
    P.S. I should add that I don't think MS has to ruin your children's lives! I don't want families dealing with a new diagnosis to feel overwhelmed. Our children seem genuinely happy. They LOVE their daddy and understand that he can't play ball with them, but he can sit and read with them. They are such sensitive, empathetic children because they have seen him go through all of this. I try to involve them at an age appropriate level as we talk about Daddy's symptoms, treatments and appointments. It seems to minimize their anxiety to talk openly. (I don't speculate or talk about his future with them.) Doing little things for him like unlatching his wheelchair as he gets out of the van helps them feel like they are "helping" it all be better. We do have a good life in the face of a tough illness.

    Visit our family's blog for more insights: athomeinthecove.com
  • Avatar
    msnita78  Sep 6, 2015 9:19 PM
    im a single mom with MS and I have had a rough time being able to deal with my loving little people. I try to assure them that I am ok but I have been in and out the hospital so much this year that they are just not sure. I have lost a lot and they cry and then I try not to cry but when they are sleep I find myself with a box full of tissues in my hands. then I start to feel bad because they tell me they wish I can drive, go places, run and play with them like I used to. they miss it and I must say I do too.