Children of a Parent with MS

My daughter was diagnosed back in 2010, shortly after the birth of her third child. Fast forward to today and she now has four children. I am so very worried about my grandchildren. They range in age from 1 to 14 years old. My daughter’s very short fuse is robbing her children of the the loving, nurturing upbringing every child deserves.

I need some suggestions on what we family members can do to not only mitigate the effects of her outbursts on the children but also on how to approach my daughter on the subject. She was told a long time ago that personality changes were the result of the lesions in the frontal cortex of her brain. I am afraid that she thinks there is nothing that can be done about it and that her irritability cannot be controlled.

My daughter has always been very stubborn and head strong. She does not respond well to constructive criticism. I have always said she marches to the beat of a different drum. Add in the emotional fire storms brought on by the MS and you have a recipe for disaster. She hates the fact that she has to take so much medication so I am sure that adding another pill will be met with much resistance. I have suggested she try marijuana but she is against that as well. She said she does not like the feeling of being “stoned”. When I tell her that there are varieties that do not have that side effect she still says no

I just do not know what to do. She is in this vicious cycle of getting so upset and stressed out that it makes her MS symptoms worse which in turn causes her more stress. She is also alienating the very people who are trying to help her. That would be her significant other and her aunt, who is a paid caregiver. She is on the verge of quitting.

This whole situation is breaking my heart. I work full-time and do not have the option of quitting my job or even going down to part-time. Part of my income goes towards paying her aunt to do the things that the state does not pay her to do such as carting the children around to all their activities and watching the toddler so my daughter can rest or get a break when her daughter is “getting on her nerves”.

I am sorry for being so long-winded. I love my daughter and my grandchildren unconditionally. Any suggestions would be greatly appreciated.

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Comments

View Comments (5)
  • Sparky78 author
    2 years ago

    Hi Justamom. I really like your idea about a website for parents of grown children with MS. Does anybody know of one? We aren’t necessarily primary caregivers, but none the less are part of the support network for our children. My heart breaks for you, justamom. Your son being stranded in the basement is of great concern. Since there are times when he is alone, does he have one of those medical alert buttons that he could press (assuming he can use his hands) to get help in an emergency?

  • justamom
    2 years ago

    Hi again! Just a thought! Is there a site where parents with children with MS can vent,where they can just plain talk about how we feel about what is happening to our children.We gave these kids life and we should matter, as a parent we are the one who’s always there,we get the phone calls when our child needs help or something done that they can no longer do! We are the one that they can yell at,take all their anger out on,only because they know we love them unconditionally and until the day our good Lord takes us we always will no matter what..Like I said , just a thought!

  • DonnaFA moderator
    2 years ago

    Hi justamom! Absolutely! We’re here to share support with caregivers as well. You may want to also check out our caregivers forum and our Facebook page. Thanks for being part of the community! -All Best, Donna (MultipleSclerosis.net team)

  • justamom
    2 years ago

    Hi,As a Mom with a Son with MS I know how you feel,my Son has three children and a wife that is less than supportive.He can no longer drive,walk,he is getting worst day by day.As a family we have raised monies for his needs,for a chair lift etc,his wife will have none of it.She has now put him in the family room which is one set of stairs from the kitchen and living rooms,two sets of stairs away from their bedroom plus main bathroom with shower.He has fallen too many times to count,that I am worried.She works park time and is with her family a lot.My Son cries a lot and I know that all he wants is to keep the peace plus I feel that he is afraid of her leaving him.At least in the living room he could look out the large window and see life,now he is in a basement room where the windows are too high for anyone standing to look out.Now I am afraid of a fire happening,he would have no escape.He swore to his Uncle and others that he was not going downstairs,All that needed done was a five step chair lift ( which we have) to be installed and he could have the use of the whole house.His wife said no and he agreed with her,oh, he didn’t go down stairs till recently so he did put her off for awhile.He will yell at me for interfering and I do know where he is coming from and my heart is breaking for him,I picture him all alone down there and crying cause he feels he has no choice. I have never had any bad words with his wife,I try my hardest to get along ,now if only for him,he has enough stress.How can anyone be so selfish,so uncaring,to think that putting a disabled man away from the main living area of his house,ok..What about the safety issues? I do not understand people like this,and Just being a Mom have no say in the matter!

  • DonnaFA moderator
    2 years ago

    Hi Sparky78,

    I’m so sorry to hear that your family is going through a tough time, and I understand that it is so hard to watch your child struggle. I thought I’d share the family and relationships resources from NMSS. You may also want to reach out to an MS Navigator (scroll to the bottom) for help, resources, and support.

    Please know that we’re always here to lend support or just to listen. You might also want to visit our caregivers forum for support. -Warmly, Donna (MultipleSclerosis.net team)

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